After 4.5 months, Isaac is about to be discharged from day therapy. I don't think I can express how much it has helped us. He is balanced and stabilized on medications, he's had intensive therapy 5 days a week to teach him, diagnose him, and do therapy with him, and with us as a family. We are no longer in crisis mode, and *sigh* I feel like I can take on the world again.
That is, until I had a call this afternoon.
These were some of the things mentioned on the call:
"Oh, you finally put him in the nuthouse!"
"How is the schizo?" (He is not schizophrenic, thank you!)
"You better be prepared to take him down like a bad habit on a Sunday morning when he wigs out again, because trust me, it's gonna happen."
"Don't even get me started on the meds. They make you crazier than you already are. They're just no good."(Nevermind I just told you that he has stabilized and is doing so much better on the medications.)
"If you ever watch Drawing Strings (some kind of movie), this guy Ling Ling reminds me of Isaac. He's a sociopathic killer that likes to cause kids to have seizures."
At that point I made up some excuse to get off the phone. I think I might have handled it better if it had come from a stranger, but this wasn't a stranger.
Up to this point, most of the friends and family that knew about Isaac's situation were nothing but supportive and caring. I'm sure Isaac's behavior in the past has caused some concern, but again, we were shown nothing but love, support, and concern. Maybe it was good I heard this all in the space of five minutes. It just confirms the world can be really cruel, and maybe I can use this kind of reaction to prepare Isaac somehow. How do you do this in a non-hurtful way (even if my heart was hurting for it to just be said to me)? It also made me realize just how ignorant the general population is about mental health problems.
Isaac finally got an official diagnosis for Autism. Add this to the list of stuff he also has: 22q11.2 duplication (22nd chromosome duplication), ADHD, dyslexia, pectus excavatum, and bipolar disorder not yet specified. He is 15 years old and he already has this all on his plate. I'm sure his life is really going to be a lesson in the road not taken. We already have to prepare that he may not do college like his peers, won't be able to serve a traditional mission like most of his friends, won't be able to live independently as soon as his peers. His life is just going to look different than we expected it to. We are doing everything in our power to make sure he gets the help, support, training, and therapies he needs to become a functioning adult in this world. He has so much desire to be like a normal kid he will work tirelessly and endlessly to make sure he can be that way. He is a very sweet kid under all these diagnosis, and as his mom and dad, we get to see the best (and worst) of him, but in the last 5 months, we can now see the best of him more often than the worst.
If he was surrounded by people that constantly said these things that were said to me this afternoon, how in the world would he ever survive? Or thrive? Or make any progress at all? Yeah, Mama Bear is ready for a fight. I will certainly be more careful about who has contact with Isaac. I know he has to learn some of these lessons himself, and I can't protect my little snowflake all the time, but good grief, we just got him better! Why would anyone think they could run their mouth like this, about a kid, and about a kid with issues? This person acted as though Isaac had a choice in these things.
Sometimes I am guilty of isolating myself in my pink bubble, because it's easier to deal with all of this with my Pepsi and my Kindle. Here's a nice surprise: Mom's can't handle everything all the time either and will spiral into a depression of their own. This week I finally felt like we were getting all the loose ends tied up, felt like we were in control again, felt like I could do LIFE again. I didn't feel like all this was too big of a mountain to climb.
I got that call and I gotta say, it stung a little. Maybe more than a little. It stopped me in my tracks. This is the world we're up against? Maybe I'm too polite, or worried, or concerned I might have hurt his feelings, this guy running his mouth, but I couldn't think of one comeback or comment that would have stopped him in his tracks, or shook his world. Of course, I can think of a bunch now that it is midnight and my mind won't stop racing about this situation.
I know I can wave my hand and have nothing to do with this person again. I won't allow Isaac to be around this person either ever again. I've heard the saying, "you can't get hurt if you don't let it hurt", but isn't that kind of denying the situation and making yourself a doormat for the next person to come along running their mouth? I refuse to be a doormat and a victim. Maybe that anger and resentment I feel building up again will be a useful defense, but that's not exactly mature either.
At least I know that my kids will always find love, compassion, and service in our home. We aren't perfect, and we're loud, and we joke about things that may or may not be inappropriate, but we are usually happy and usually we have good things here, in our home, which is exactly what home needs to be. It's a soft place to land at the end of the day.
I hope that's enough for any one of our kids when the world gets too big, and mean, and scary. So in the end, I offer a prayer to this ignorant person. I hope they find peace without taking others' peace away. I hope they find compassion abundantly put upon them. I hope they find knowledge in things they don't understand. I hope they learn about unconditional love by having it heaped upon them. I hope they find a soft place to land at the end of the day, and be mindful of those that may not have one. I hope they can be generous with kindness and service, and that someone can make their day a little bit better. I hope they can find fulfillment in the imperfect things in life. I hope and pray that I can be forgiving of these things that aren't so forthcoming for him, or others.
Wednesday, November 12, 2014
Saturday, July 12, 2014
When Plans Change
After the whole 5 weeks of trying to get Isaac into a day treatment program, I had gotten all these other things set up. I found a medication manager, outpatient therapist, horse therapy we could afford because insurance doesn't cover it, but they will reimburse us with our own money, a veterinarian internship, and constructed a level system for our family to help with discipline. Just after I dotted the last i and crossed the last t, I got a phone call that Isaac had been approved for day therapy, we were awarded financial aid, and he started the following Wednesday.
Begin hair pulling now.
While I was initially upset about it, albeit glad that he got into day therapy because that is what he ultimately needed, I was still angry. Now I had to call and undo all these things I had just lined up.
Have I mentioned the torrent of emotions you have when you are stressed to the max?
I kept hearing a voice in my head say, "Everything happens for a reason. Be patient and see how this plays out."
So I took a deep breath and waited. Isaac had two major appointments the week he started day therapy. One was with the medication manager. The week before was with the therapist. These two people both told me I wouldn't be able to use them for Isaac's treatment because there would be people available at the treatment facility that would take that over for the duration of the therapy, however, (HOWEVER), I could come back to them after the treatment program ended. Essentially, before you let your blood boil over, it's ok, we will just take a 3 month break and you can come back. All that work wasn't for nothing! I was assured the day therapy people would be happy we already had our outpatient people lined up. And they were.
Wednesday we admitted Isaac to day therapy, and this was a 3 hour process. We met with a therapist, medication manager, teacher, and nurses. We told our story for the fourth time in 2 months (it's not a short story either). Isaac is supposed to be in the day therapy for 12 weeks. This is from 8-5 M-F. It's not far from Curtis' work and he will drop off and pick up.
Because Isaac was admitted in the last two weeks of school, he received an incomplete for 9th grade. We were supposed to enroll him in summer school, but because we were told he would be in day therapy and to not worry about it (they do school every day there), I didn't sign him up. Then the summer school enrollment date passed, and the day therapy looked like it was going to fall through, so I started to panic about what we were going to do for his grades and if he could go onto 10th grade. I called the school district special ed director, and he gave me some options.
1. Isaac could just make up the credits in future summers.
2. Isaac could have an elective slot through the year in which he worked on these packets for credit recovery.
As it turned out, the facility notified his last school, and they contacted me, and they will get it set up for Isaac to finish his missing assignments and not have to do credit recovery. He will be able to do his schoolwork at the facility, and in the fall, he will continue with them online, making a seamless transition to 10th grade. I panicked for nothing.
Another wonderful thing happened. Because Isaac has multiple diagnosis: cerebral palsy, 22q11.2 (22nd chromosome duplication), ADHD, possible Autism, and now a mood disorder (they told us they aren't sure if he is bipolar or if this is a mood regulation issue), they are going to have a diagnostician try to piece some stuff together for us and fill in the gaps in hopes of telling us what symptoms belong to what disorder. On top of this, we are testing for intellectual disability. Some of his previous testing was inconsistent and there were huge gaps between test scores and abilities.
Answers!!
All of this finally came together and Isaac is getting help he desperately needed. We are working with 10 different people in different places to get him the therapies and supports he needs. It's been a fight and an uphill battle to get this point. I feel like I finally got to the top of the mountain and I just want to camp up there awhile. I don't think Curtis realizes just how much relief I have that he is responsible for taking Isaac to and from therapy. I don't think I quite realize it.
Our past two days were easy. It helped that our van battery died and we have no where we can go, so no errands, no trips, no running to and from appointments. We just hung out at home, visited with my aunt that came to visit for one very short day, and made picnic food and took naps. Isaac had really good days at therapy, and the first night home was rough, but the next two nights were great. I need to focus on how to get my energy levels up again, but I still feel like I'm decompressing. Everything seems to be falling into place.
I have been reminded that my time schedule is not God's time schedule, even if I try to change it, or force it. I'm also reminded that this time of help and support came at the most important time. While it's been a struggle over Isaac's life to deal with these disabilities and behaviors, he is old enough and capable of learning how to deal with them and learn to care for himself, and I'm at a point that I can let him do it, as well as understand that I need more people to help him, that I can't do all this on my own. That has been a big lesson for me to learn.
Begin hair pulling now.
While I was initially upset about it, albeit glad that he got into day therapy because that is what he ultimately needed, I was still angry. Now I had to call and undo all these things I had just lined up.
Have I mentioned the torrent of emotions you have when you are stressed to the max?
I kept hearing a voice in my head say, "Everything happens for a reason. Be patient and see how this plays out."
So I took a deep breath and waited. Isaac had two major appointments the week he started day therapy. One was with the medication manager. The week before was with the therapist. These two people both told me I wouldn't be able to use them for Isaac's treatment because there would be people available at the treatment facility that would take that over for the duration of the therapy, however, (HOWEVER), I could come back to them after the treatment program ended. Essentially, before you let your blood boil over, it's ok, we will just take a 3 month break and you can come back. All that work wasn't for nothing! I was assured the day therapy people would be happy we already had our outpatient people lined up. And they were.
Wednesday we admitted Isaac to day therapy, and this was a 3 hour process. We met with a therapist, medication manager, teacher, and nurses. We told our story for the fourth time in 2 months (it's not a short story either). Isaac is supposed to be in the day therapy for 12 weeks. This is from 8-5 M-F. It's not far from Curtis' work and he will drop off and pick up.
Because Isaac was admitted in the last two weeks of school, he received an incomplete for 9th grade. We were supposed to enroll him in summer school, but because we were told he would be in day therapy and to not worry about it (they do school every day there), I didn't sign him up. Then the summer school enrollment date passed, and the day therapy looked like it was going to fall through, so I started to panic about what we were going to do for his grades and if he could go onto 10th grade. I called the school district special ed director, and he gave me some options.
1. Isaac could just make up the credits in future summers.
2. Isaac could have an elective slot through the year in which he worked on these packets for credit recovery.
As it turned out, the facility notified his last school, and they contacted me, and they will get it set up for Isaac to finish his missing assignments and not have to do credit recovery. He will be able to do his schoolwork at the facility, and in the fall, he will continue with them online, making a seamless transition to 10th grade. I panicked for nothing.
Another wonderful thing happened. Because Isaac has multiple diagnosis: cerebral palsy, 22q11.2 (22nd chromosome duplication), ADHD, possible Autism, and now a mood disorder (they told us they aren't sure if he is bipolar or if this is a mood regulation issue), they are going to have a diagnostician try to piece some stuff together for us and fill in the gaps in hopes of telling us what symptoms belong to what disorder. On top of this, we are testing for intellectual disability. Some of his previous testing was inconsistent and there were huge gaps between test scores and abilities.
Answers!!
All of this finally came together and Isaac is getting help he desperately needed. We are working with 10 different people in different places to get him the therapies and supports he needs. It's been a fight and an uphill battle to get this point. I feel like I finally got to the top of the mountain and I just want to camp up there awhile. I don't think Curtis realizes just how much relief I have that he is responsible for taking Isaac to and from therapy. I don't think I quite realize it.
Our past two days were easy. It helped that our van battery died and we have no where we can go, so no errands, no trips, no running to and from appointments. We just hung out at home, visited with my aunt that came to visit for one very short day, and made picnic food and took naps. Isaac had really good days at therapy, and the first night home was rough, but the next two nights were great. I need to focus on how to get my energy levels up again, but I still feel like I'm decompressing. Everything seems to be falling into place.
I have been reminded that my time schedule is not God's time schedule, even if I try to change it, or force it. I'm also reminded that this time of help and support came at the most important time. While it's been a struggle over Isaac's life to deal with these disabilities and behaviors, he is old enough and capable of learning how to deal with them and learn to care for himself, and I'm at a point that I can let him do it, as well as understand that I need more people to help him, that I can't do all this on my own. That has been a big lesson for me to learn.
Friday, June 27, 2014
Diagnosis: Bipolar Affective Disorder
Since Isaac was 10 years old, we entered the world of pharmaceuticals to help treat a number of odd, concerning behaviors that no amount of patience, diet, oils, homeopathics, or various natural therapies were helping. At one point, we were given an ultimatum: do you want to treat the aggression or the inattentiveness? Apparently, treating both, which were both difficult to deal with, was not an option, so we opted for the aggression. After a number of resources were exhausted (schools, doctors, specialty hospitals, special education directors (who incidentally turned us into CPS)) we finally found a psychiatrist that recommended taking Isaac out of school again (we had homeschooled for four years, and put him in school for three months hoping for help), prescribed Depakote and Concerta, and followed up with us every three weeks. We finally could breathe and the aggression calmed down. He was stabilizing and we were seeing the sweet boy that Isaac could be. He was calm, the anxiety was gone, no longer was he running away from home, jumping out windows, setting fires, and attacking younger siblings and me. We continued on the medication and entered behavior therapy for the next three years, with one change to Focalin from Concerta (ADHD medications).
Winter of 2012 we decided mutually with our doctor to take Isaac off the Depakote. Time is a funny thing. I can't remember why we took him off, and apparently we didn't see how Depakote was affecting him as a mood stabilizer, so nobody seemed concerned to ween him off the medication. Four months later he had the chest surgery to correct Pectus Excavatum. From that point on it was a downward spiral. Some things I have learned: special needs kids don't react well to anesthesia, and if you have some kind of mood disorder, anesthesia can send you into a tail spin. In one year, almost to the day, we watched Isaac get less and less sleep, to the point of 3-4 hours a night. He hoarded food and ate all night, despite continuing to look anorexic. He was becoming withdrawn and focused on all the things he couldn't do since the surgery, but at times engaged in reckless behavior, like jumping off 12 foot high walls, crashing his bike, breaking his arm, and using air soft rifles against others. His mood was unpredictable, one minute being friendly and sweet, the next, angry and aggressive. Eventually, all of the family's energy was pouring into Isaac. He had become a vortex that was sucking all the energy and life out of everyone around him. Siblings were scared of him, we didn't have time to comfort injured and offended kids, or ourselves, because he was cycling so fast we couldn't keep up. Medications were added: Lexapro for depression, Trazadone for sleep, Rozarum when the Trazadone stopped working. Vyvanse was switched out for the Focalin after I was back at our doctor's office every month telling him things were getting bad again with Isaac, dosages were adjusted.
Isaac was relentless and I was loosing hope. The night before everything changed, our home teachers had come over with a lesson and I had asked for a blessing for myself and for Isaac. I felt at peace, and most of all, I kept my resolve and clarity just when I needed it.
The morning everything snapped was busy. Ammon was graduating from Kindergarten. The elementary kids had track and field day. Jesse and Isaac were in their final two weeks of school. I thought we were going to have a normal day, even if it was busy, with the end of school year activities. A fight broke out when Isaac wanted to see Ammon's gift bag of goodies from his bus driver. Ammon didn't want Isaac to touch it, but he was pushed away and hurt, so Hannah stepped in to protect Ammon. Isaac attacked Hannah, punching her in the back of her head and tackling her to the floor, knocking her glasses off and stepping on them to break them. All this happened fast. I was going to the bathroom quickly before getting the kids out the door to drop them off, and of course, at a moment when I wouldn't be around to stop things before they got out of hand. Ammon and Hannah were okay, but crying. I was down to minutes to get the kids to school on time. I had to make split decisions.
I called my friend to get the baby from the house. Curtis had left for work, which was 30 minutes away on a good day with no traffic. I had to be at the school for Ammon's graduation at 9:30 but he needed to be there at 9. I called Curtis to come home, it was an emergency. I called the doctor and got an appointment for 10:30 for Isaac, which Curtis would take Isaac to if I wasn't back home. I made arrangements for Ammon to go the friend's house after graduation. The graduation, as much as I wanted to enjoy it and listen to their program and clap and be happy, I couldn't. My stomach was churning. I was shaking with nerves. I hadn't eaten anything and mixed with low blood sugar and extreme stress, I wasn't feeling so great. Curtis got home in record time, Jesse was safe, Isaac acted like nothing was wrong. The graduation was taking forever, and even though they had some yummy cookies and treats, I grabbed Ammon and his certificate and left within 2 minutes of the end of the ceremony. Isaac and Curtis were already at the doctor. I practically rolled Ammon out of the van at the curb and took off again for the hospital.
They had just finished up when I got there. The doctor was making calls. He came back in and updated me. We all agreed that trying to adjust any more meds were out of his realm, and we decided to admit him to a psychiatric unit. The next stop was the ER. It took 5 hours to admit Isaac, find a bed for him in a pediatric unit, take labs, run an EKG, talk with a social worker, doctor, nurse and insurance. At 5:30 we were transferred to another facility. Isaac was happy and normal, a little chatty towards the end of the day, and manic by the time we got to the facility. He acted like a caged animal in the car, and cried before even getting into the building. Once in the building, they separated us right away. He was stripped of his clothes, changed into sweats, shoes removed, all personal belongings removed from him and shown to a room where he sat by himself with a bed, desk and book case. Curtis and I were taken to a room with a case worker who took our history, reason for Isaac being admitted, and told he would be there for 7-10 days.
Isaac looked so little when we left him. He understood why he was there, but was concerned our dog Cookie would miss him, and he was nervous about being so far from home. Maybe all mothers see their child, no matter how big he is, as the little baby they nurtured and coddled. While I knew this is what he needed, it was difficult walking away from him that night. Later, I felt relief, anger, sadness, remorse, guilt, grief, and questioned if this was really my new normal. I had a son in an psychiatric unit.
The next morning things were quiet. Everyone got ready for school without much ado. Still, the house was quiet. I don't think the little kids realized where Isaac was, and Hannah had thought he had gotten in an accident that required him to stay in the hospital. She actually looked guilty when I told her he was admitted because he attacked her. So began the explanations and conversations that Isaac was getting some help, his brain needed to get better, and comforting and consoling all the kids that had long been overdue for them.
The next day we met with the doctor and therapist. They told us Isaac had Bipolar Affective Disorder. Suddenly, a whole bunch of puzzle pieces just fit together. Now we knew why he wasn't sleeping, why he was happy and then mad, why he was aggressive, why going off the Depakote sent us into a tailspin that landed us here, why not all of the diagnosis he had (ADHD, Aspergers, Processing disorders, etc) didn't exactly explain away Isaac's problems. We have a son with a mental illness. What do we do now?
I went home angry. Why?! Why this, why now, why him, why us, why couldn't this have been found YEARS ago?! What does this mean for him? Is he even more dependent on us as an adult than we suspected? What happens when he decides to stop his meds? What does this life look like now? How do I protect my little kids as I get older and Isaac gets bigger? Is that a concern? Is suicide a possibility? There were so many questions and not enough answers.
Isaac was in the unit for 8 days. I realized with him out of the home how much energy and time was spent diffusing situations all day long that involved him. Without him there, things were quiet, getting done, the kids were getting along, tension was at a minimum. I slept for three days, hard, like I hadn't slept in years. I really hadn't because we were ever vigilant trying to keep Isaac and our family safe. We had one night that we met for family therapy and it went horrible. If Isaac was to come home in two days, that night did not give us much hope that he was ready, and nor were we. We went home again, feeling angry and inept. There were still too many questions and not enough answers.
Two days later, they called us again for another therapy session, and announced they were sending Isaac home with us. They took away the Lexapro and Rozarum, started Seroquel, stopped Vyvanse and started Focalin, this time split into doses during the day. If Isaac got out of hand, give him half a Seroquel. The only other advice was to start a level system for modifying behavior. We took him home. Everyone walked on eggshells. I was nervous that we hadn't had time to prepare the kids for his homecoming and that some things needed to change. I was nervous that Isaac wouldn't be able to handle the chaos and noise that came with a house full of little kids. He did great that night. The next day, not so well, and after fighting for 4 hours, I gave him the Seroquel. The next day was the same. Five hours later he could function again and talk with us. So that part was good, but I was not. It was like being back in a war zone after an R&R.
They told us that they felt Isaac would do better in Residential therapy, where he would live on site for 3 months, step down to Day therapy for 3 months, and then step down to Outpatient therapy after that. Our insurance wouldn't pay for Residential therapy. It would cover 20,000 of the 30,000 for Day therapy. Up to this point (and maybe this is a rant for another day), I viewed having insurance as a good thing, like, instead of 80.00 for a visit, we just paid 15.00 for the co-pay. It was doable. We had never had a situation before that insurance dictated what treatment we received, rather than the doctor, but here we arrived on insurance's doorstep. I felt like a beggar. We applied for financial aid, per their suggestion. Meanwhile, the slot for Isaac's Day therapy was slipping away. One week, two weeks passed. I sent every piece of financial paper I could hoping to get the financial aid. It looked as if it was going to be denied.
I spent two straight weeks, 8 hours a day, on the phone looking for therapists, medication managers, therapy options, talked with a social worker and case worker, had the state offer to take custody of Isaac so he may or may not get the treatment he needs if we couldn't find a way to help him, called friends to babysit, watched our paychecks dwindle away for medications, check ups, and gas, called the insurance company over and over to ask for names of potential therapists and what therapies were covered. One night, my stomach crumpled in on itself. This was fruitless. School was out now and the kids were begging to go places. I couldn't let Isaac go because I didn't know how stable he was on his meds, or in large crowds, or both. I couldn't keep track of the appointments and what calls I had made. My house looked like a bomb had exploded because I had spent days on the phone. I couldn't sleep, but I craved it.
A couple of articles turned up around this time. Here is one of them. They talked about the correlation of psychotropic drugs and school shootings, and believe me, I have had my share of people ask if I have tried essential oils, nutritional supplements, diets, homeopathic treatments, and energy therapies in any effort at all to avoid putting my son on psychotropic drugs. Yes, I have, and everyone of them failed. But now I was seeing this article in a different light. What are the parents' stories for these kids? Did they try to get the help for their kids with obvious mental illnesses but got no where because the insurance dictated what they could and couldn't do? Did they call 24 doctors, therapists, and various other people that may have been some kind of help for their child? Did they get told there were no openings for 4 weeks, and did they want that appointment, or did they want to try to find someone more available? Did they get told this doctor wasn't accepting new patients? Did these incidents happen while they were waiting for those appointments? How many of these parents were running on very little sleep, exhausting all aspects of possible care for their child because they were fearing the worst, and then the worst thing happened before they got help?
I finally got financial aid approved, and instead of 10,000.00, we will owe 1200.00. This is doable for us with a large family and with other kids in other therapies and schools to help with their disabilities. Yet again, however, they pushed the date that Isaac starts day therapy to two weeks out, rather than one, making the gap between inpatient care and day therapy 5 weeks. When I thought this was going to fall through, I made arrangements with other therapists, medication managers, horse therapy, and doctors to treat Isaac on an outpatient therapy. 15 minutes before our first intake appointment with a therapist, the billing office called to tell me he got approved for financial aid and could start day therapy now. Now I get to undo all the work I've done for 2 weeks seeking out every possible course of treatment I could find. I don't want to complain, I will take what I can get, even if the treatment is delayed.
Two days later, that stomach pain returned, but this time, it was extremely painful, shooting pain down my arm, into my jaw, down into my legs. I had several symptoms of a heart attack. Great, I thought. Just what we need. I went to Urgent Care, hoping to avoid an ER visit. The EKG came back abnormal. The next day, I looked up gall bladder vs. heart attack symptoms. Just to be sure, I went to the ER. No heart attack, everything was normal, even the ultrasound on all my internal organs. It just left stomach ulcers as the culprit. Not surprising. The last time I was stressed out this bad, I had the same symptoms, and just as I mentioned, time and stress do things to your memory. The same time Isaac was admitted to inpatient therapy, the doctor called me to tell my my hormones were all out of whack and I had the onset of diabetes. Stress will do that to your hormones, and my beloved Pepsi was a double edged sword: it helped me cope, but gave me extra weight and now diabetes. I stopped drinking Pepsi two months ago and there went one of my coping skills. I notice that now I just have no emotions. I have a lot of anxiety, and anger, but I'm not doing things I once enjoyed. There's no time to care for myself, but now I'm forced to find time. I want to be happy, but to be honest, I'm mad it's taken so long to get Isaac into day therapy, and I'm mad I did all that unnecessary work, and I'm mad I lost a little faith in the end there. I'm mad that I can't have a normal life with normal kids and live in a normal house in a bright pink bubble of happiness and perfection. I'm mad I even think that is possible. I'm mad my body is sick and worn out and depleted because of stress and Celiac disease and the constant running of my mind looking for answers and therapists and help. I'm mad that this is such a struggle, not just for me, but for other parents with a mentally ill child. I'm mad that Isaac has all this to deal with. This just isn't fair that he gets 14 labels of various disabilities, syndromes, and illnesses.
I wanted to end this on a happy note, kind of like hoping this would have a happy ending, but it doesn't right now. We are just existing from one day to the next, trying to balance life with medications, sleep schedules and play schedules and dinners and the ever growing mound of laundry. I want to tell you I found my faith, I found peace, and I found a silver lining in a cloud somewhere. Good things HAVE happened, but there is so much that hasn't happened, that has disappointed, that has been a struggle, it's difficult to keep that positivity and bright attitude. My friend said simply the other night, "This isn't fun anymore." It isn't fun. I had hoped with the duplication diagnosis that was the end of this slogging journey, but it's not. I'm just beginning another one. And this one feels so much heavier and harder than the last one. I wake up and put one foot in front of the other, doing things like a robot because I can't just lay down and do nothing. I have never been that way and maybe that's why I'm able to keep going. I know from experience that there will be better days ahead and brighter, happier moments. I'm clinging to the few I get now. I sit outside in the evenings and watch the humming birds and the clouds, emptying my mind, hoping it's enough, hoping I did enough, hoping I can do more tomorrow. I watch my kids play and help each other and hope they are having a happy childhood. I look for ways to simplify my life. I look for the good in every hardship, constantly reminding myself that things happen for a reason, to go with the flow, to turn things over to God, because right now I think He can handle things much better than I can (not that I ever thought I could do better).
One last thought. I have contemplated how Curtis and I have managed to parent these seven kids. I realized, talking with another friend, two things we have been blessed with: Curtis with patience, and I with tolerance. This could have never worked if either of those things were lacking. How equally balanced we are for the task ahead of us, how blessed we are to have patience and tolerance, how well planned this life is for us. I read a lesson recently about the faith and care of Hannah and her son Samuel in the Bible. I don't think any of us feels like we are really prepared for motherhood before our first child is born, and we certainly don't know what to expect, especially if that child is born with special needs. I could relate to Hannah though, that she didn't feel complete, or that her husband was just enough for her because she needed children to pour her love into as well. She was a faithful woman and I cannot imagine the hardship she endured turning her young son over to God to become a man of God. She went on to have more children and she cared for them as well, and I assume, lived a happy, contented life, but I still go back to her love and concern for Samuel, making sure he had a new coat every year, seeing him once a year, and I'm sure, doubting if she had made the right choice in sending him away, but never wavering in her decision. I pray for steadfastness, not just for myself and Curtis, but for other parents that go through this. This is not for the faint of heart.
Winter of 2012 we decided mutually with our doctor to take Isaac off the Depakote. Time is a funny thing. I can't remember why we took him off, and apparently we didn't see how Depakote was affecting him as a mood stabilizer, so nobody seemed concerned to ween him off the medication. Four months later he had the chest surgery to correct Pectus Excavatum. From that point on it was a downward spiral. Some things I have learned: special needs kids don't react well to anesthesia, and if you have some kind of mood disorder, anesthesia can send you into a tail spin. In one year, almost to the day, we watched Isaac get less and less sleep, to the point of 3-4 hours a night. He hoarded food and ate all night, despite continuing to look anorexic. He was becoming withdrawn and focused on all the things he couldn't do since the surgery, but at times engaged in reckless behavior, like jumping off 12 foot high walls, crashing his bike, breaking his arm, and using air soft rifles against others. His mood was unpredictable, one minute being friendly and sweet, the next, angry and aggressive. Eventually, all of the family's energy was pouring into Isaac. He had become a vortex that was sucking all the energy and life out of everyone around him. Siblings were scared of him, we didn't have time to comfort injured and offended kids, or ourselves, because he was cycling so fast we couldn't keep up. Medications were added: Lexapro for depression, Trazadone for sleep, Rozarum when the Trazadone stopped working. Vyvanse was switched out for the Focalin after I was back at our doctor's office every month telling him things were getting bad again with Isaac, dosages were adjusted.
Isaac was relentless and I was loosing hope. The night before everything changed, our home teachers had come over with a lesson and I had asked for a blessing for myself and for Isaac. I felt at peace, and most of all, I kept my resolve and clarity just when I needed it.
The morning everything snapped was busy. Ammon was graduating from Kindergarten. The elementary kids had track and field day. Jesse and Isaac were in their final two weeks of school. I thought we were going to have a normal day, even if it was busy, with the end of school year activities. A fight broke out when Isaac wanted to see Ammon's gift bag of goodies from his bus driver. Ammon didn't want Isaac to touch it, but he was pushed away and hurt, so Hannah stepped in to protect Ammon. Isaac attacked Hannah, punching her in the back of her head and tackling her to the floor, knocking her glasses off and stepping on them to break them. All this happened fast. I was going to the bathroom quickly before getting the kids out the door to drop them off, and of course, at a moment when I wouldn't be around to stop things before they got out of hand. Ammon and Hannah were okay, but crying. I was down to minutes to get the kids to school on time. I had to make split decisions.
I called my friend to get the baby from the house. Curtis had left for work, which was 30 minutes away on a good day with no traffic. I had to be at the school for Ammon's graduation at 9:30 but he needed to be there at 9. I called Curtis to come home, it was an emergency. I called the doctor and got an appointment for 10:30 for Isaac, which Curtis would take Isaac to if I wasn't back home. I made arrangements for Ammon to go the friend's house after graduation. The graduation, as much as I wanted to enjoy it and listen to their program and clap and be happy, I couldn't. My stomach was churning. I was shaking with nerves. I hadn't eaten anything and mixed with low blood sugar and extreme stress, I wasn't feeling so great. Curtis got home in record time, Jesse was safe, Isaac acted like nothing was wrong. The graduation was taking forever, and even though they had some yummy cookies and treats, I grabbed Ammon and his certificate and left within 2 minutes of the end of the ceremony. Isaac and Curtis were already at the doctor. I practically rolled Ammon out of the van at the curb and took off again for the hospital.
They had just finished up when I got there. The doctor was making calls. He came back in and updated me. We all agreed that trying to adjust any more meds were out of his realm, and we decided to admit him to a psychiatric unit. The next stop was the ER. It took 5 hours to admit Isaac, find a bed for him in a pediatric unit, take labs, run an EKG, talk with a social worker, doctor, nurse and insurance. At 5:30 we were transferred to another facility. Isaac was happy and normal, a little chatty towards the end of the day, and manic by the time we got to the facility. He acted like a caged animal in the car, and cried before even getting into the building. Once in the building, they separated us right away. He was stripped of his clothes, changed into sweats, shoes removed, all personal belongings removed from him and shown to a room where he sat by himself with a bed, desk and book case. Curtis and I were taken to a room with a case worker who took our history, reason for Isaac being admitted, and told he would be there for 7-10 days.
Isaac looked so little when we left him. He understood why he was there, but was concerned our dog Cookie would miss him, and he was nervous about being so far from home. Maybe all mothers see their child, no matter how big he is, as the little baby they nurtured and coddled. While I knew this is what he needed, it was difficult walking away from him that night. Later, I felt relief, anger, sadness, remorse, guilt, grief, and questioned if this was really my new normal. I had a son in an psychiatric unit.
The next morning things were quiet. Everyone got ready for school without much ado. Still, the house was quiet. I don't think the little kids realized where Isaac was, and Hannah had thought he had gotten in an accident that required him to stay in the hospital. She actually looked guilty when I told her he was admitted because he attacked her. So began the explanations and conversations that Isaac was getting some help, his brain needed to get better, and comforting and consoling all the kids that had long been overdue for them.
The next day we met with the doctor and therapist. They told us Isaac had Bipolar Affective Disorder. Suddenly, a whole bunch of puzzle pieces just fit together. Now we knew why he wasn't sleeping, why he was happy and then mad, why he was aggressive, why going off the Depakote sent us into a tailspin that landed us here, why not all of the diagnosis he had (ADHD, Aspergers, Processing disorders, etc) didn't exactly explain away Isaac's problems. We have a son with a mental illness. What do we do now?
I went home angry. Why?! Why this, why now, why him, why us, why couldn't this have been found YEARS ago?! What does this mean for him? Is he even more dependent on us as an adult than we suspected? What happens when he decides to stop his meds? What does this life look like now? How do I protect my little kids as I get older and Isaac gets bigger? Is that a concern? Is suicide a possibility? There were so many questions and not enough answers.
Isaac was in the unit for 8 days. I realized with him out of the home how much energy and time was spent diffusing situations all day long that involved him. Without him there, things were quiet, getting done, the kids were getting along, tension was at a minimum. I slept for three days, hard, like I hadn't slept in years. I really hadn't because we were ever vigilant trying to keep Isaac and our family safe. We had one night that we met for family therapy and it went horrible. If Isaac was to come home in two days, that night did not give us much hope that he was ready, and nor were we. We went home again, feeling angry and inept. There were still too many questions and not enough answers.
Two days later, they called us again for another therapy session, and announced they were sending Isaac home with us. They took away the Lexapro and Rozarum, started Seroquel, stopped Vyvanse and started Focalin, this time split into doses during the day. If Isaac got out of hand, give him half a Seroquel. The only other advice was to start a level system for modifying behavior. We took him home. Everyone walked on eggshells. I was nervous that we hadn't had time to prepare the kids for his homecoming and that some things needed to change. I was nervous that Isaac wouldn't be able to handle the chaos and noise that came with a house full of little kids. He did great that night. The next day, not so well, and after fighting for 4 hours, I gave him the Seroquel. The next day was the same. Five hours later he could function again and talk with us. So that part was good, but I was not. It was like being back in a war zone after an R&R.
They told us that they felt Isaac would do better in Residential therapy, where he would live on site for 3 months, step down to Day therapy for 3 months, and then step down to Outpatient therapy after that. Our insurance wouldn't pay for Residential therapy. It would cover 20,000 of the 30,000 for Day therapy. Up to this point (and maybe this is a rant for another day), I viewed having insurance as a good thing, like, instead of 80.00 for a visit, we just paid 15.00 for the co-pay. It was doable. We had never had a situation before that insurance dictated what treatment we received, rather than the doctor, but here we arrived on insurance's doorstep. I felt like a beggar. We applied for financial aid, per their suggestion. Meanwhile, the slot for Isaac's Day therapy was slipping away. One week, two weeks passed. I sent every piece of financial paper I could hoping to get the financial aid. It looked as if it was going to be denied.
I spent two straight weeks, 8 hours a day, on the phone looking for therapists, medication managers, therapy options, talked with a social worker and case worker, had the state offer to take custody of Isaac so he may or may not get the treatment he needs if we couldn't find a way to help him, called friends to babysit, watched our paychecks dwindle away for medications, check ups, and gas, called the insurance company over and over to ask for names of potential therapists and what therapies were covered. One night, my stomach crumpled in on itself. This was fruitless. School was out now and the kids were begging to go places. I couldn't let Isaac go because I didn't know how stable he was on his meds, or in large crowds, or both. I couldn't keep track of the appointments and what calls I had made. My house looked like a bomb had exploded because I had spent days on the phone. I couldn't sleep, but I craved it.
A couple of articles turned up around this time. Here is one of them. They talked about the correlation of psychotropic drugs and school shootings, and believe me, I have had my share of people ask if I have tried essential oils, nutritional supplements, diets, homeopathic treatments, and energy therapies in any effort at all to avoid putting my son on psychotropic drugs. Yes, I have, and everyone of them failed. But now I was seeing this article in a different light. What are the parents' stories for these kids? Did they try to get the help for their kids with obvious mental illnesses but got no where because the insurance dictated what they could and couldn't do? Did they call 24 doctors, therapists, and various other people that may have been some kind of help for their child? Did they get told there were no openings for 4 weeks, and did they want that appointment, or did they want to try to find someone more available? Did they get told this doctor wasn't accepting new patients? Did these incidents happen while they were waiting for those appointments? How many of these parents were running on very little sleep, exhausting all aspects of possible care for their child because they were fearing the worst, and then the worst thing happened before they got help?
I finally got financial aid approved, and instead of 10,000.00, we will owe 1200.00. This is doable for us with a large family and with other kids in other therapies and schools to help with their disabilities. Yet again, however, they pushed the date that Isaac starts day therapy to two weeks out, rather than one, making the gap between inpatient care and day therapy 5 weeks. When I thought this was going to fall through, I made arrangements with other therapists, medication managers, horse therapy, and doctors to treat Isaac on an outpatient therapy. 15 minutes before our first intake appointment with a therapist, the billing office called to tell me he got approved for financial aid and could start day therapy now. Now I get to undo all the work I've done for 2 weeks seeking out every possible course of treatment I could find. I don't want to complain, I will take what I can get, even if the treatment is delayed.
Two days later, that stomach pain returned, but this time, it was extremely painful, shooting pain down my arm, into my jaw, down into my legs. I had several symptoms of a heart attack. Great, I thought. Just what we need. I went to Urgent Care, hoping to avoid an ER visit. The EKG came back abnormal. The next day, I looked up gall bladder vs. heart attack symptoms. Just to be sure, I went to the ER. No heart attack, everything was normal, even the ultrasound on all my internal organs. It just left stomach ulcers as the culprit. Not surprising. The last time I was stressed out this bad, I had the same symptoms, and just as I mentioned, time and stress do things to your memory. The same time Isaac was admitted to inpatient therapy, the doctor called me to tell my my hormones were all out of whack and I had the onset of diabetes. Stress will do that to your hormones, and my beloved Pepsi was a double edged sword: it helped me cope, but gave me extra weight and now diabetes. I stopped drinking Pepsi two months ago and there went one of my coping skills. I notice that now I just have no emotions. I have a lot of anxiety, and anger, but I'm not doing things I once enjoyed. There's no time to care for myself, but now I'm forced to find time. I want to be happy, but to be honest, I'm mad it's taken so long to get Isaac into day therapy, and I'm mad I did all that unnecessary work, and I'm mad I lost a little faith in the end there. I'm mad that I can't have a normal life with normal kids and live in a normal house in a bright pink bubble of happiness and perfection. I'm mad I even think that is possible. I'm mad my body is sick and worn out and depleted because of stress and Celiac disease and the constant running of my mind looking for answers and therapists and help. I'm mad that this is such a struggle, not just for me, but for other parents with a mentally ill child. I'm mad that Isaac has all this to deal with. This just isn't fair that he gets 14 labels of various disabilities, syndromes, and illnesses.
I wanted to end this on a happy note, kind of like hoping this would have a happy ending, but it doesn't right now. We are just existing from one day to the next, trying to balance life with medications, sleep schedules and play schedules and dinners and the ever growing mound of laundry. I want to tell you I found my faith, I found peace, and I found a silver lining in a cloud somewhere. Good things HAVE happened, but there is so much that hasn't happened, that has disappointed, that has been a struggle, it's difficult to keep that positivity and bright attitude. My friend said simply the other night, "This isn't fun anymore." It isn't fun. I had hoped with the duplication diagnosis that was the end of this slogging journey, but it's not. I'm just beginning another one. And this one feels so much heavier and harder than the last one. I wake up and put one foot in front of the other, doing things like a robot because I can't just lay down and do nothing. I have never been that way and maybe that's why I'm able to keep going. I know from experience that there will be better days ahead and brighter, happier moments. I'm clinging to the few I get now. I sit outside in the evenings and watch the humming birds and the clouds, emptying my mind, hoping it's enough, hoping I did enough, hoping I can do more tomorrow. I watch my kids play and help each other and hope they are having a happy childhood. I look for ways to simplify my life. I look for the good in every hardship, constantly reminding myself that things happen for a reason, to go with the flow, to turn things over to God, because right now I think He can handle things much better than I can (not that I ever thought I could do better).
One last thought. I have contemplated how Curtis and I have managed to parent these seven kids. I realized, talking with another friend, two things we have been blessed with: Curtis with patience, and I with tolerance. This could have never worked if either of those things were lacking. How equally balanced we are for the task ahead of us, how blessed we are to have patience and tolerance, how well planned this life is for us. I read a lesson recently about the faith and care of Hannah and her son Samuel in the Bible. I don't think any of us feels like we are really prepared for motherhood before our first child is born, and we certainly don't know what to expect, especially if that child is born with special needs. I could relate to Hannah though, that she didn't feel complete, or that her husband was just enough for her because she needed children to pour her love into as well. She was a faithful woman and I cannot imagine the hardship she endured turning her young son over to God to become a man of God. She went on to have more children and she cared for them as well, and I assume, lived a happy, contented life, but I still go back to her love and concern for Samuel, making sure he had a new coat every year, seeing him once a year, and I'm sure, doubting if she had made the right choice in sending him away, but never wavering in her decision. I pray for steadfastness, not just for myself and Curtis, but for other parents that go through this. This is not for the faint of heart.
I Need a Manual
I like to plan. I'm very detailed oriented. I will make schedules and budgets and chore lists and they look and seem like the most perfect spreadsheets ever made. I call family meetings so we can make sure every single person in the family doesn't have any surprises and they all know what needs to be done. My problem is that I can't implement them. Then I get upset when I can't make them work.
I think I might actually have ADHD. Honestly, I think it's because I can't just focus on one thing long enough to get it done because there is always some other problem creeping up behind me. I think I have time to paint them living room? No...because while I'm trying to paint, the little boys are in the school room emptying the closet and I can't leave them unsupervised long enough to give all my attention to something so detailed. It is a rainy, cold day, perfect for working on a rag quilt I wanted to make for Hannah. Wrong. My needle is missing from the sewing machine, because it's a machine and therefore must be dismantled by the child "mechanic" in my house. I know, I'll make a yummy, sugar filled treat for them when they get home from school! Nope. My mixer is missing a part and they ate half the ingredients needed. All the laundry is finished!! GLORIOUS DAY!! Till I walk into their bedroom and find it all over the floor. We are going to have a family outing, and we have to get out of the house before I go insane. This is a 45 minute ordeal to just get out of the house, so I've gotten to the point that I just make sure I count 7 heads in the van. Once we get to the destination, I hear: 'I don't have my shoes', 'Someone's poopy' (Who got the diaper bag? Where is it? Oh, we forgot it at home?!), 'I'm hungry', and 'Someone is crying because this isn't where they wanted to go'. My daily motto: "You can't please everyone, myself included".
Maybe this is more of a symptom of having a large family and not necessarily because of kids with issues.
I wish I had a manual that details these situations out. Maybe multiple choice options come with it but the correct answers are conveniently not published with the book.
SITUATION: Your daughter wants to walk the dogs, but has the wrong kind of leashes to walk them with. All you can envision is the dog seeing a cat and dragging her down the hill, she lets go of the leash, gets scraped up enough that she needs stitches and the dog is running wild through traffic and yards while your other kids chase him down. Meanwhile, your toddler is in the house alone getting into the refrigerator. DO YOU:
A. Go after the dog.
B. Stay with the toddler and hope the older kids don't get run over.
C. Think your daughter's injuries can be treated at home with bandaids.
D. Buckle the baby in the van, run over a bike in the driveway, chase kids down one by one in the van, realize the dog is now lost, give baby wipes to the injured/bleeding kid, and go home to start dinner and hope a neighbor finds your dogs and bring them home for you.
I just realized after writing that, most of it was hypothetical.
This was the real situation:
Your daughter wants to walk the dogs with a friend but can't find the leashes needed to walk a 65lb Blab (basset hound/lab mix) that likes to run and the other dog that really should have been named Nutsy because he thinks everything needs to be barked at and chased. Your older son starts a fight with her and hid the leashes because he wants to walk the dogs himself. It's the end of the day, you're trying to start dinner, do homework, and fill out yet another medical form at the same time. To settle the situation you tell your daughter she can't walk the dogs, but she can go on a 20 minute walk with her friend. This is her reaction: "I HATE THIS HOUSE", kicks a foot sized hole in the wall, and slams door followed by multiple objects being thrown at the door. Meanwhile, your kids decide this is the perfect time to go out front and let the dogs loose in the process. DO YOU:
A. Drink a soda.
B. Put them all to bed RIGHT NOW, who cares if they have had dinner.
C. Send older kids to round up the dogs and rain punishments on your daughter that will last until she is 33 or the holes are fixed in the walls, which ever comes first.
D. Find new homes for the dogs.
E. Realize you have lost this battle and YOU go to bed without dinner, because stick a fork in me, I'm done, and they probably already ate half of dinner raw anyway, so why bother cooking.
Yeah...I got nothing.
I need a book that details out all possible scenarios and gives nice little tips along the way, like:
I think I might actually have ADHD. Honestly, I think it's because I can't just focus on one thing long enough to get it done because there is always some other problem creeping up behind me. I think I have time to paint them living room? No...because while I'm trying to paint, the little boys are in the school room emptying the closet and I can't leave them unsupervised long enough to give all my attention to something so detailed. It is a rainy, cold day, perfect for working on a rag quilt I wanted to make for Hannah. Wrong. My needle is missing from the sewing machine, because it's a machine and therefore must be dismantled by the child "mechanic" in my house. I know, I'll make a yummy, sugar filled treat for them when they get home from school! Nope. My mixer is missing a part and they ate half the ingredients needed. All the laundry is finished!! GLORIOUS DAY!! Till I walk into their bedroom and find it all over the floor. We are going to have a family outing, and we have to get out of the house before I go insane. This is a 45 minute ordeal to just get out of the house, so I've gotten to the point that I just make sure I count 7 heads in the van. Once we get to the destination, I hear: 'I don't have my shoes', 'Someone's poopy' (Who got the diaper bag? Where is it? Oh, we forgot it at home?!), 'I'm hungry', and 'Someone is crying because this isn't where they wanted to go'. My daily motto: "You can't please everyone, myself included".
Maybe this is more of a symptom of having a large family and not necessarily because of kids with issues.
I wish I had a manual that details these situations out. Maybe multiple choice options come with it but the correct answers are conveniently not published with the book.
SITUATION: Your daughter wants to walk the dogs, but has the wrong kind of leashes to walk them with. All you can envision is the dog seeing a cat and dragging her down the hill, she lets go of the leash, gets scraped up enough that she needs stitches and the dog is running wild through traffic and yards while your other kids chase him down. Meanwhile, your toddler is in the house alone getting into the refrigerator. DO YOU:
A. Go after the dog.
B. Stay with the toddler and hope the older kids don't get run over.
C. Think your daughter's injuries can be treated at home with bandaids.
D. Buckle the baby in the van, run over a bike in the driveway, chase kids down one by one in the van, realize the dog is now lost, give baby wipes to the injured/bleeding kid, and go home to start dinner and hope a neighbor finds your dogs and bring them home for you.
I just realized after writing that, most of it was hypothetical.
This was the real situation:
Your daughter wants to walk the dogs with a friend but can't find the leashes needed to walk a 65lb Blab (basset hound/lab mix) that likes to run and the other dog that really should have been named Nutsy because he thinks everything needs to be barked at and chased. Your older son starts a fight with her and hid the leashes because he wants to walk the dogs himself. It's the end of the day, you're trying to start dinner, do homework, and fill out yet another medical form at the same time. To settle the situation you tell your daughter she can't walk the dogs, but she can go on a 20 minute walk with her friend. This is her reaction: "I HATE THIS HOUSE", kicks a foot sized hole in the wall, and slams door followed by multiple objects being thrown at the door. Meanwhile, your kids decide this is the perfect time to go out front and let the dogs loose in the process. DO YOU:
A. Drink a soda.
B. Put them all to bed RIGHT NOW, who cares if they have had dinner.
C. Send older kids to round up the dogs and rain punishments on your daughter that will last until she is 33 or the holes are fixed in the walls, which ever comes first.
D. Find new homes for the dogs.
E. Realize you have lost this battle and YOU go to bed without dinner, because stick a fork in me, I'm done, and they probably already ate half of dinner raw anyway, so why bother cooking.
Yeah...I got nothing.
I need a book that details out all possible scenarios and gives nice little tips along the way, like:
- Remember to put clothes on first thing in the morning so you don't flash the neighbors getting your naked 3 year old off the trampoline while others cry because they were peed on.
- Hide your bandaids and tweezers in places even you will forget because otherwise they become stickers for decorations and tools for backyard experiments.
- Learn how to handle hostage situations like the pros! Bedtime Routines...
I know for a fact all this looks so good on paper. Thousands of books have been written on the subject. Thousands of seminars and classes and support groups have been attended because we are all looking for answers. I remember we went to an Autism support group one time and we were besides ourselves trying to figure out how to clip fingernails without needing a backboard, straps and three people. Nobody had any answers. A year later we figured out if we squeezed his fingers really hard till they went numb, we could clip his nails without even a peep. We went back to the support group with that information, feeling pretty proud of ourselves. Everything else around us was a conundrum but we knew how to clip our autistic son's fingernails!
I'll just celebrate the happy moments, count 7 heads at the end of the day, and call it good. One day I will know all the answers, albeit a little late. Maybe I can help with the grandkids. Maybe my kids will never know I didn't know what I was doing? It's all just a wild guess, hope, and a prayer.
I'll just celebrate the happy moments, count 7 heads at the end of the day, and call it good. One day I will know all the answers, albeit a little late. Maybe I can help with the grandkids. Maybe my kids will never know I didn't know what I was doing? It's all just a wild guess, hope, and a prayer.
Thursday, April 3, 2014
Isaac and 22q11.2 Duplication
This year we entered into genetic testing. The infographic at the side of the blog talks about the road to genetic diagnosing. 7+ years to get a result was actually 15 years for us. And misdiagnosis was more than 3 for us. In the fall of 2013 we entered the school year with 4 IEP's on 4 kids, and I told our family doctor I wanted to seek out official diagnosis for the kids, mainly, 4 of the 5 boys. We started at Primary Children's Hospital for psychological evaluations, and from there we were propelled to Neurology, and from there, Genetics. 4 months of non-stop appointments at clinics and hospitals all over Utah valley finally got us some answers.
To get to that point though was me being a huge squeaky wheel. From the pyschological evaluation they saw fire-starting. This lead them to think he had Klinefelter's Syndrome, which is when a boy (all male parts, identifies as a boy) has an extra X chromosome (XXY). The drive home from that was horrible. Isaac: "You mean I'm going to grow boobs?!!? I don't think so!!" Turns out, the test was negative. I still don't get how the fire-starting equals Klinefelters.
I pressed our family doctor to test him for Fragile X syndrome. Negative. They tested him for a kidney disease, can't remember which one, but he had never had a problem with his kidneys. That was negative. They were left with nothing else but to run a $4000.00 genetic micro-array test. Then they found something.
They called us back to the office to give us the news. I was panicking. While this was exactly what I wanted, I was terrified to find out just what it was. Would this diagnosis be the end all, be all and we could just go skipping through spring meadows and singing all the way? I sort of romanticized it. I kind of thought there would be cookies and milk in the end.
Here's the conversations:
"We found a duplication on the 22nd Chromosome."
Blank stare from Isaac and me.
"It's called 22q11.2 Duplication."
"What's the name of it?"
"There isn't a name."
Blank stare again. "What's the treatment?"
"There isn't a treatment."
"What's the things associated with it?"
"Everything Isaac has. Autism, ADHD, tremors (not Cerebral Palsy and not Parkinson's Disease, but looks like Parkinson's), small head. Yeah. Everything. Here's a handout."
"What do we do for it."
"Nothing."
I looked at Isaac. He has no idea. I have no idea. This wasn't exactly the answer I was hoping for. We don't even get a name for this. The doctor, a neurologist, had hunted down a geneticist who suggested we test for this, and so this poor guy had no clue and no time to really invest in a rare chromosomal disorder. He recommended we go see a geneticist that would tell us more (he didn't), and that was pretty much it for us.
In the car, we took a breath and all Isaac said was:
"At least I'm not gonna grow boobs."
All this build up, all this anxiety, all the YEARS we struggled, searched, treated, and cried, came down to a few numbers and letters and a disorder only figured out 10 years ago. It's so new only a handful of people have it around the world. It did give us some why's. Many of the kids with 22q11 Duplication have learning disabilities, Autism, ADHD, low immunity, growth delays, behavior issues, developmental delays, and unusual facial features. So we treat the symptoms. Medication for ADHD, anxiety, sleep problems, vitamins for immune system. Braces for teeth, physical therapy for low/high muscle tone. IEP's for learning disabilities. Today his eye exam revealed he has no 3D vision, has tracking capabilities of an 8 year old, and slow processing of information (both spoken and read, which we knew), and a second diagnosis for Dyslexia.
No, having the diagnosis didn't really change anything that we weren't already doing. It won't limit his lifespan. It won't cause more problems than we already know about.
When we got home that night I carried on as usual. Cleaning, cooking, laundry, putting kids to bed. Then I cried. What does this mean for our other kids with disabilities? Do they have this too? Was I irresponsible in having 5 more kids after Isaac if there was a possibility of genetic disorders being passed on? What did it mean for him later in life? Had I failed Isaac somehow? How did he get all these things to deal with, and why couldn't I fix it for him? What if.....what if.....All the resolve and bravery and motivation to carry on just left me. I didn't feel like I could do anything more, and those thoughts paralyzed me. I actually told Curtis, "I can't do this anymore." Do what? Live? Be a mother? Sweep the floor? What couldn't I do? Everything.
I crawled into bed exhausted and still crying.
The beautiful thing about sleep is it shuts everything off. The next morning life carried on as usual. Isaac was in a good mood. We worked on school, the day went well. Every time I looked in the mirror I saw misery and swollen eyes. I didn't want to look at Isaac and just see 22q11.2. I wanted to look at him and see my son, my baby, my young man that was now as tall as me. I finally asked Curtis for a blessing that night. I didn't want to go bed crying again. It helped.
Maybe we all go through a mourning phase and something I didn't realize is that there are multiple parts to mourning. I had anger. Why did it take so long for them to find this? I wanted to blame all the other doctors that had shoved us out the door while shrugging their shoulders. No one had time to investigate this. I blamed us for moving to rural Nebraska where, even though we didn't know it at the time, had very limited resources that would have helped us. I went into research mode. What does this mean for Isaac's future? What does this mean for us as parents that now parent a possibly life dependent child? I cried some more because gone were the hopes I'd had for Isaac. Slowly these things had been taken away over the years with the plethora of problems and diagnosis that came up, but that night, it felt like they were all gone. I wanted to know WHY and HOW this happened to Isaac and possibly my other kids.
Another week went by and other things came up, like Ammon's Poopocalypse, and the kids came down with some stuff, and we decided to paint the living room, and a shoulder injury. Pretty soon, I didn't see 22q11.2 when I saw Isaac. We joked and laughed and like a rubber band, all was normal again. I began to tell him he wasn't going to stay in school until age 21, that we will still plan for him to be a Veterinarian, and he can serve a Service Mission, to which he let out his breath like he had been holding it for years and admitted he was worried about serving a traditional mission because he knows his limitations and doesn't handle being away from home well. We set some goals and made some plans, small ones, but achievable ones, and charted out chores and how to take responsibility. We figured out how to do Scout Camp outs, talked with church leaders about his disabilities so that he was comfortable and felt like he could accomplish something. We reviewed his IEP and made some adjustments.
Some thoughts we had to change were, "You are 15 and should be able to do this", when the fact of the matter was, he isn't there yet. Someone told me a long time ago that Autism was a developmental delay, so it meant it will just take longer for them to figure it out. That has proven true over and over. Once we backed off, while not making it obvious, he didn't feel that pressure on him and stopped acting out. We changed some of his medications and that improved a lot of other areas for him, like hunger all the time, and sleeping more, and better control of his behavior.
Prayers work.
I love learning and education, so the more I could learn the better, and I sought it out. I wasn't going to just lay down and be steamrolled anymore. I found a small group on Facebook that was specifically for the 22 Duplication, another one for Rare Chromosome Disorders. I found some hospitals that are doing studies for these kids. I found some connections, as far away as Sweden, and there was comfort in that, that even half a world away, another mom was doing and feeling the same exact things I was. I researched all the stuff the 22 Chromosome does, plus others. I learned a lot of kids have other deletions and duplications on others as well. I learned about Trisomy (Isaac is .5 away from being Trisomy. Does that make any sense?). I learned about the effects of radiation, and global radiation, like Chernobyl and Fukashima. I learned more about problems with sleeping (low iron? low ferritin? melatonin receptors?), diet, and became thankful for the things Isaac didn't have, like feeding tubes, severe retardation, being non-verbal. Also, that at 15, nurses were exclaiming just how cute he was. Maybe that's their job, but it was compliment for both of us that lightened our day.
Everyday we learn something else about 22q11.2 and how it has affected many more things for Isaac. Dental exams reveal stuff, eye exams answer more questions. Asking a question like, "Do your kids have...." and getting an answer that yes, they do, is more like a check mark of acceptance than OMG that too?!
Isaac loves movies, so for as long as I live, I have a movie buddy. He loves being outside, so I will always have one kid that will choose running around outside over playing video games. Sometimes he has great insight and such a different perspective that we all feel like a great mystery was solved. He still gives me hugs and kisses without shame. He's still my kid, with all the wonderful, good parts about him and nothing has ever been taken away from him. Despite what my grieving mother's brain says, Isaac is still Isaac and he's fine, and happy, and willing to try new things and go on adventures, just not too far from home.
We still have bad days. Just like before the diagnosis, we just work through it, have an early night, and move on the next day. I gave myself a few days to wallow in self pity, but that wasn't going to serve any purposes in the long run. The only advice I can give to other parents on that is give yourself permission to have a pity party, just don't park there forever. Get permission from a friend if you can't give it yourself. You gotta move on.
Maybe we all go through a mourning phase and something I didn't realize is that there are multiple parts to mourning. I had anger. Why did it take so long for them to find this? I wanted to blame all the other doctors that had shoved us out the door while shrugging their shoulders. No one had time to investigate this. I blamed us for moving to rural Nebraska where, even though we didn't know it at the time, had very limited resources that would have helped us. I went into research mode. What does this mean for Isaac's future? What does this mean for us as parents that now parent a possibly life dependent child? I cried some more because gone were the hopes I'd had for Isaac. Slowly these things had been taken away over the years with the plethora of problems and diagnosis that came up, but that night, it felt like they were all gone. I wanted to know WHY and HOW this happened to Isaac and possibly my other kids.
Another week went by and other things came up, like Ammon's Poopocalypse, and the kids came down with some stuff, and we decided to paint the living room, and a shoulder injury. Pretty soon, I didn't see 22q11.2 when I saw Isaac. We joked and laughed and like a rubber band, all was normal again. I began to tell him he wasn't going to stay in school until age 21, that we will still plan for him to be a Veterinarian, and he can serve a Service Mission, to which he let out his breath like he had been holding it for years and admitted he was worried about serving a traditional mission because he knows his limitations and doesn't handle being away from home well. We set some goals and made some plans, small ones, but achievable ones, and charted out chores and how to take responsibility. We figured out how to do Scout Camp outs, talked with church leaders about his disabilities so that he was comfortable and felt like he could accomplish something. We reviewed his IEP and made some adjustments.
Some thoughts we had to change were, "You are 15 and should be able to do this", when the fact of the matter was, he isn't there yet. Someone told me a long time ago that Autism was a developmental delay, so it meant it will just take longer for them to figure it out. That has proven true over and over. Once we backed off, while not making it obvious, he didn't feel that pressure on him and stopped acting out. We changed some of his medications and that improved a lot of other areas for him, like hunger all the time, and sleeping more, and better control of his behavior.
Prayers work.
I love learning and education, so the more I could learn the better, and I sought it out. I wasn't going to just lay down and be steamrolled anymore. I found a small group on Facebook that was specifically for the 22 Duplication, another one for Rare Chromosome Disorders. I found some hospitals that are doing studies for these kids. I found some connections, as far away as Sweden, and there was comfort in that, that even half a world away, another mom was doing and feeling the same exact things I was. I researched all the stuff the 22 Chromosome does, plus others. I learned a lot of kids have other deletions and duplications on others as well. I learned about Trisomy (Isaac is .5 away from being Trisomy. Does that make any sense?). I learned about the effects of radiation, and global radiation, like Chernobyl and Fukashima. I learned more about problems with sleeping (low iron? low ferritin? melatonin receptors?), diet, and became thankful for the things Isaac didn't have, like feeding tubes, severe retardation, being non-verbal. Also, that at 15, nurses were exclaiming just how cute he was. Maybe that's their job, but it was compliment for both of us that lightened our day.
Everyday we learn something else about 22q11.2 and how it has affected many more things for Isaac. Dental exams reveal stuff, eye exams answer more questions. Asking a question like, "Do your kids have...." and getting an answer that yes, they do, is more like a check mark of acceptance than OMG that too?!
Isaac loves movies, so for as long as I live, I have a movie buddy. He loves being outside, so I will always have one kid that will choose running around outside over playing video games. Sometimes he has great insight and such a different perspective that we all feel like a great mystery was solved. He still gives me hugs and kisses without shame. He's still my kid, with all the wonderful, good parts about him and nothing has ever been taken away from him. Despite what my grieving mother's brain says, Isaac is still Isaac and he's fine, and happy, and willing to try new things and go on adventures, just not too far from home.
We still have bad days. Just like before the diagnosis, we just work through it, have an early night, and move on the next day. I gave myself a few days to wallow in self pity, but that wasn't going to serve any purposes in the long run. The only advice I can give to other parents on that is give yourself permission to have a pity party, just don't park there forever. Get permission from a friend if you can't give it yourself. You gotta move on.
Wednesday, April 2, 2014
Ammon and the Poopocalypse
*Don't read this while eating*
Birthday number 6 just passed and he is still in diapers. Before you gasp in shock, let me just tell you, we already have. Every day.
Obviously, this is somewhat of a problem, so we traipsed off to the GI doctor to find out why.
I didn't know what to expect and Ammon certainly didn't either. Previous to this appointment we found out he is highly allergic to all dairy. Also included in that list is beans, peanuts, and baker's yeast. I don't know what else to feed the kid, although his allergy test suggest he would do best eating a diet of sardines, beets, and blueberries. Gluten and eggs are on the iffy side. We cut out gluten at age 2, and it resolved the severe constipation and encompresis. We thought if we cut out the highly allergic foods, the potty training would magically resolve itself. It didn't.
Ammon was put into early intervention at 2 for speech and autism. He was very high functioning, but he had some problems that we couldn't pinpoint to disease/disorder or living in a family of autistics and special needs. At 4 he fell out of the opening of the trampoline "safety" net, landed on concrete and suffered a skull fracture, brain bleed, and cochlear concussion. This set him back some, and while he healed slowly, we put him in a special needs Pre-K, which he followed onto in Kindergarten. They plan to keep him in small group instruction, OT, and PT until 3rd grade. Mostly the school indicated this was because of him not potty training, and most first grade teachers aren't going to change diapers.
Once we figured out the food allergies were causing uncontrollable diarrhea, we thought for sure that was the solution to all things Ammon: cut out the allergic foods and the pooping will fix itself. It didn't. Schedule toilet time. No. Reward him with treats/toys. Nope. Have to stop at a gas station for an emergency bathroom break for you? Yes. (*shivers*....really? You would rather go in a disgusting gas station bathroom than in the relatively clean bathroom at home?) Try reading on the toilet. Absolutely not. Timers. No way. Wear underwear because he will then be forced to feel the wetness and grossness? Doesn't care...but he likes the feel of undies.
No choice but to go the GI Clinic.
They examined him. What the.......????? Poor Ammon. He jumped everytime someone touched him the rest of the day. They asked him questions about poop. Not a topic of interest for him. We discussed nutrition, psychological problems, Mega Colon (sounds like something you don't want to run into in a back alley), nerve damage (that's the problem), timers, how to get him on the toilet, and lastly: a colon cleanse.
Up to this point, I was starting to doubt myself as a parent. Did I really potty train 5 other kids? Didn't they give us hints they had to go? Did I do anything unusual for them? Why can't I remember what worked for them? Thank goodness for the baby because I see all these things in her. Ammon gives no signals. I have held him when he pooped and didn't know until I smelled it. I think because he has had diarrhea for so much of his life he doesn't recognize the signals. There is no regularity. He still can't get to the toilet in time to pee, much less poop. So, ok, I'm understanding some stuff about Ammon, getting more compassionate, feeling like we.can.do.this.
The Colon Cleanse. Their suggestion was to do this for three weekends straight. Get everything cleaned out and then we start over. For the record, this kid poops several times a day. I highly doubt there is any poop left in him by the end of the day, much less anything hard that might be blocking anything up. But I went home, armed with bottles of Magnesium Citrate, mineral oil, Miralax, and extra Pull-Ups. (He is too big for diapers now).
First weekend: it is a mess.
Second weekend: NO ONE told me the kid would LIKE Magnesium Citrate! He had 1 cup, sneaked into the fridge, and drank the rest of the bottle. He effectively gave himself a double dosage of it, plus had Miralax on top of it. What has been seen cannot be unseen. It was a Poopocalypse. It was horrible. We had one person cleaning him up, another on the floor, another on the carpet, another on laundry, and another on any trails we missed. And yet, not once, did he ever make it to the toilet. My house smells like poop. Ran out of diapers. Ran out Pull-Ups, Ran out of wipes. By the end of the weekend, it wasn't even poop anymore. Just water. Still nasty.
Third weekend: Nope. Shut this mess down. I'm not doing it and you can't make me. Besides, I don't think he had recovered from the last weekend.
One time a month after the Poopocalypse: No.
How.....why.......Why would anyone prescribe that for a kid that has diarrhea all the time?! It was so harsh for him, but even in the middle of it, I asked him if his tummy hurt, and if so, that was when he needed to get to the bathroom. He told me it hurt is tummy, but I never heard him cry or complain or saw him wince. It's almost unreal and inconceivable that a little kid wouldn't respond to that kind of discomfort. He was scared too! There has got to be other ways to do this. Literally scaring the poop out of him is not going to fix the problem.
So, fine. He will go to the other school, which is totally fine by me because I know he needs help in many other areas too. Maybe we haven't been on the allergen diet long enough for his body to heal? Maybe we haven't quite gotten everything his brain injury has affected? I don't know the answer, but I suppose it's time to find one.
I don't have any words of advice for other families with kids that don't potty train, but I'm open for suggestions.
Birthday number 6 just passed and he is still in diapers. Before you gasp in shock, let me just tell you, we already have. Every day.
Obviously, this is somewhat of a problem, so we traipsed off to the GI doctor to find out why.
I didn't know what to expect and Ammon certainly didn't either. Previous to this appointment we found out he is highly allergic to all dairy. Also included in that list is beans, peanuts, and baker's yeast. I don't know what else to feed the kid, although his allergy test suggest he would do best eating a diet of sardines, beets, and blueberries. Gluten and eggs are on the iffy side. We cut out gluten at age 2, and it resolved the severe constipation and encompresis. We thought if we cut out the highly allergic foods, the potty training would magically resolve itself. It didn't.
Ammon was put into early intervention at 2 for speech and autism. He was very high functioning, but he had some problems that we couldn't pinpoint to disease/disorder or living in a family of autistics and special needs. At 4 he fell out of the opening of the trampoline "safety" net, landed on concrete and suffered a skull fracture, brain bleed, and cochlear concussion. This set him back some, and while he healed slowly, we put him in a special needs Pre-K, which he followed onto in Kindergarten. They plan to keep him in small group instruction, OT, and PT until 3rd grade. Mostly the school indicated this was because of him not potty training, and most first grade teachers aren't going to change diapers.
Once we figured out the food allergies were causing uncontrollable diarrhea, we thought for sure that was the solution to all things Ammon: cut out the allergic foods and the pooping will fix itself. It didn't. Schedule toilet time. No. Reward him with treats/toys. Nope. Have to stop at a gas station for an emergency bathroom break for you? Yes. (*shivers*....really? You would rather go in a disgusting gas station bathroom than in the relatively clean bathroom at home?) Try reading on the toilet. Absolutely not. Timers. No way. Wear underwear because he will then be forced to feel the wetness and grossness? Doesn't care...but he likes the feel of undies.
No choice but to go the GI Clinic.
They examined him. What the.......????? Poor Ammon. He jumped everytime someone touched him the rest of the day. They asked him questions about poop. Not a topic of interest for him. We discussed nutrition, psychological problems, Mega Colon (sounds like something you don't want to run into in a back alley), nerve damage (that's the problem), timers, how to get him on the toilet, and lastly: a colon cleanse.
Up to this point, I was starting to doubt myself as a parent. Did I really potty train 5 other kids? Didn't they give us hints they had to go? Did I do anything unusual for them? Why can't I remember what worked for them? Thank goodness for the baby because I see all these things in her. Ammon gives no signals. I have held him when he pooped and didn't know until I smelled it. I think because he has had diarrhea for so much of his life he doesn't recognize the signals. There is no regularity. He still can't get to the toilet in time to pee, much less poop. So, ok, I'm understanding some stuff about Ammon, getting more compassionate, feeling like we.can.do.this.
The Colon Cleanse. Their suggestion was to do this for three weekends straight. Get everything cleaned out and then we start over. For the record, this kid poops several times a day. I highly doubt there is any poop left in him by the end of the day, much less anything hard that might be blocking anything up. But I went home, armed with bottles of Magnesium Citrate, mineral oil, Miralax, and extra Pull-Ups. (He is too big for diapers now).
First weekend: it is a mess.
Second weekend: NO ONE told me the kid would LIKE Magnesium Citrate! He had 1 cup, sneaked into the fridge, and drank the rest of the bottle. He effectively gave himself a double dosage of it, plus had Miralax on top of it. What has been seen cannot be unseen. It was a Poopocalypse. It was horrible. We had one person cleaning him up, another on the floor, another on the carpet, another on laundry, and another on any trails we missed. And yet, not once, did he ever make it to the toilet. My house smells like poop. Ran out of diapers. Ran out Pull-Ups, Ran out of wipes. By the end of the weekend, it wasn't even poop anymore. Just water. Still nasty.
Third weekend: Nope. Shut this mess down. I'm not doing it and you can't make me. Besides, I don't think he had recovered from the last weekend.
One time a month after the Poopocalypse: No.
How.....why.......Why would anyone prescribe that for a kid that has diarrhea all the time?! It was so harsh for him, but even in the middle of it, I asked him if his tummy hurt, and if so, that was when he needed to get to the bathroom. He told me it hurt is tummy, but I never heard him cry or complain or saw him wince. It's almost unreal and inconceivable that a little kid wouldn't respond to that kind of discomfort. He was scared too! There has got to be other ways to do this. Literally scaring the poop out of him is not going to fix the problem.
So, fine. He will go to the other school, which is totally fine by me because I know he needs help in many other areas too. Maybe we haven't been on the allergen diet long enough for his body to heal? Maybe we haven't quite gotten everything his brain injury has affected? I don't know the answer, but I suppose it's time to find one.
I don't have any words of advice for other families with kids that don't potty train, but I'm open for suggestions.
Tuesday, April 1, 2014
Simeon's Brain Injury and Drawings
Simeon will be turning 10 in a couple of months. At 9 months he contracted an infection that caused him to run a 105 fever for a week. When it broke, he could no longer sit up, crawl, nurse, or feed himself. He had lost all his progress up to that point. Over the next three months it slowly came back, but he was globally delayed in all things. By two, he was finally walking, stacking blocks, but non-verbal and played by himself most of the time. We had been through meltdowns with Isaac, but Simeon's were an event to behold. He also tended to have seizures when we changed his diapers, slightly bumped his head, or got over-tired. At just over two, he had regained some of his large motor skills and tried to climb the freezer in the kitchen. He fell off, landed on the tile floor, stood up, had a seizure and fell backwards, hitting his head again. It was another 6 months to regain his functions again, but even then, it wasn't everything. In that time, we were told that along with a Traumatic Brain Injury (TBI), he also had Autism (moderate). He started early intervention for speech and occupational therapy (OT). During this time, he became obsessed with trains and penguins. Surf's Up came out and we were watching it 5 times a day. He finally called me Monny at 4 years old. He was starting to talk! Thanks Surf's Up!! (I'm not being sarcastic, we truly love this movie.)
Because we were living in Nebraska, the winters were cold and long, so I bought some tents and tunnels. We had a large living room, so we set them up and the kids would play in them all day. While watching them, I realized Simeon didn't know how to crawl, so he couldn't get through the tunnels, and he was trying to do this funny duck walk to try and play in them. Then came potty training. Then he was running and playing and talking. Then he was stealing the neighbors new kittens and making homes for them in boxes. We thought the worst was behind us, but yet again, he suffered another TBI when the dog ran into the back of him on the driveway and he landed on his head. This one was easier for him to recover from, maybe because he was older, but he also started Kindergarten and they worked with him all day on speech, OT, physical therapy, and coping skills.
We moved in the middle of Kindergarten to Utah, and resumed homeschooling at that time because of all the upsets from the move. Simeon wasn't very cooperative, so I let him do his own thing while we studied. He drew. These drawings were huge for us and him! He had found a way to communicate, how to process the things that he was seeing happen around him, and worked on the fine motor control he had lost with the brain injuries. I read much later that having TBI patients draw helped the brain to make connections again. It must have worked because the following year (now in public school), he made progress by leaps and bounds! These are just a few of the hundreds of drawings he drew in that one year.
Before you look at the pictures, I have to explain the penguin obsession. Somehow, Simeon obtained two stuffed penguins, Cody and Pengu. These two went everywhere with him and they were the first to "try" things for Simeon before he would do anything. He would have conversations with these two, one or the other would go to school with him in his backpack, he would take them to the zoo to make sure they could talk to their real penguin friends. This has continued to carry on over the years, although now, I only see his penguins at night on his bed.
Simeon Conversating with Cody and Pengu
Lewis and Clark's Winter Fort with American Flag
A Maze already completed for you so you can follow his instructions.
The Galaxy with pilots fighting.
Simeon At Work (complete with goggles)
Things I Like To Do In The Fall. He is telling the penguin to sit behind him.
Working On The Docks
I found this entry with the picture: Speaking of penguins. Cody showed up yesterday. We think he went for a swim in the toilet. He was soaking wet and the plunger and potty training toilet seat were nearby. Then I found Pengu in the playroom looking pretty rough.
Jumping Truck
Card Players
Our Living Room
Telescope and Igloo: Simeon started out drawing an igloo for this picture and then it morphed into something like a camp ground. He pointed out he was drawing trees as well. Then on the second house from the left I asked what was on top of that house. He replied that it was a telescope. I said, "Oh! So you can see the stars at night?" Simeon replied, "No. So I can see the neighbor's yard sale."
Motorcycle Bridge
Family with three emotions: Mad, Sad, Happy
Ambulance and Doughnut Truck
Thanksgiving Point
Rocket Ship
Camper Family
Wipe Out Course (loves that show)
Train Bridge
Penguins Playing Video Games
Restaurant Row
Penguin Doughnut Factory (combining his favorite animal with favorite food). We took a field trip to Krispy Kreme and he could have cared less about eating a doughnut, but he loved the machines he could watch.
Simeon's Disabilities:
3 TBI
Autism
Multiple Learning Disabilities (communication, reading, math, language, writing)
Global Developmental Delays
Speech delay
Low memory
Cognitive Disorder Not Otherwise Specified (IQ affected)
Currently 3rd grade, but on a 1.8 grade level
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