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Friday, October 23, 2015

A New Home

It was his senior year and we all were anxious to get him out of the high school environment. And by we, I mean his father, myself and his high school special education team. High school was crushing his spirit, making him so unhappy and angry.  

He finished all of his credits by December and by that January, he would be starting Transition classes.  We were invited to attend Open House for the Adult Transition program to get an idea of what his new adventure would look like. The Open House took place at the community college campus. This is where he would have class a couple of times per week. I remember being excited about that aspect. My son …on a college campus, before he even graduated from high school. 

As I sat through the presentation, observing the various students and listening to the information being presented, I wondered to myself, “Is this right for him? Is this what he really needs?” 
He’s so intelligent.  I wanted him to take an actual college class or two. 
Was he ready for college classes? Not really. He needed so much support in the high school setting. 
Was he living up to his potential? Hardly, but I didn’t think it was  because he didn’t have the ability to reach further. I thought his lack of achievement was because he had been bogged down in the social quagmire of high school. 

Maybe the thing holding him back was the medication that he was taking. It did not allow his brain to work the way it did when he was in elementary school and even middle school before he started taking it. I had a list of rationalizations for why he wasn’t doing as well as he could. I was making excuses in my mind of why he wasn't able to live up to my dreams for him.  It had to be some outside factor that was out of his control and mine. 

Up until the 8th grade, he had no need for extra help from special education.  Sure, he needed a few accommodations …but nothing like the level of help that was required to get him through high school. 

In hindsight and in reality, did he end up needing the Adult Transition program? Absolutely! 
Did the transition out of the the high school environment make everything better? Absolutely not. It was just the beginning of a whole new set of issues. 

I did not allow my apprehension, fear of change or my dreams of something better for him, stop me from getting what he really needed. We enrolled in the transition program and he made slow but sure progress, rising from the first level of the program to the 2nd level (which provided less support) within a year's time.  

Effective parenting is not always about the dreams we have for our children. We have to do what needs to be done in order to take them to the next level of growth.  This was no different then when he was in the first grade and the school attempted to give him an ADHD diagnosis.  They’re just trying to label my child …put him in a box (I thought).  So, I had my own private testing by a neuropsychologist. The results were pointedly clear. He did indeed have ADHD, and that was only the beginning of the diagnoses he would collect over the years. 

Cut to two (2) years later after he started the Transition program, we go to look at our first group home. I’m at my wits end with his behaviors at home. He is disruptive, extremely argumentative and just generally a real pain in the ass to live with. Just as any 20 year-old, still living with his parents would be ...except like on steroids!  

He was doing so well at work, having held down a job for well over a year. He was making good progress in his transition program. I thought maybe if he got some distance from me, he could start making more progress towards independence and we could all lead a more peaceful life.

As I looked around this group home, I thought to myself, Is this the right situation for him? Is this what he really needs? 
Moving into a group home certainly was not my dream for my first born son.  I had a lot of fears.

  • How he would adjust to the change and the structure of the group home. 
  • How would he be able to get along with roommates? 
  • I was afraid that he was so unstable emotionally,  that he may end up having a complete breakdown. 

There had to be a better choice. 

I didn’t let on to him how I felt about it. After the tour of the home, I put on the optimistic face. I wanted him to make his own decision. I didn't think I was strong enough to make it myself.  He said yes at first. He even said, "Maybe this is God's plan for me."A few days later he became anxious about all of the change he would have to make. He then adamantly said, "NO! I’m not doing it!" (His favorite initial answer to everything we ask.) 

We went on for several more months of bad to worse behavior at home, while I looked into other much more expensive options. His behavior was screaming "something has got to change!" It was almost as if he was subconsciously begging for us to get it over with already and make him move out. 

I was unraveling, unable to think straight half of the time,  unable to eat the other half of the time. I wasn't sleeping well.  I was on edge, filled with anxiety, always waiting for the next bomb to drop. My heart rate stayed high. I was afraid to even check my blood pressure. I was falling apart. 

My husband was starting to lose it too. He became more and more involved in the day to day care of Red's life.  He tried to give me a break and started taking on more.  He began to see exactly what I had been going through for the past few years.  His own blood pressure climbed. We were both just exhausted. Everyone in the house was miserable. 

Finally, something broke. Behaviors reached a peak. The emotional unrest was beginning to effect our family's health and safety. We were forced to make some tough decisions.  

We started off with some major medication changes.  We started it over the summer and thanks to the imprecise nature of the so called science of psychiatry, it seemed like everything that could go wrong, went wrong. We're talking from behavior that was horrific to the stuff nightmares are made of. 

You know that feeling you get as a mother, something is way off? Follow that instinct! And don’t stop pushing until you get some results.  I kept pushing until he was seen by the right set of eyes. By that I mean, I finally met a psychiatrist that I didn't hate.  I just wish there were more like him in the world. 

Our results ended in a big reduction in meds, along with a huge reduction in his weight. He has completely changed his diet and is now hyper focused on exercise. If you had told me a year ago that he would change to a healthy lifestyle, I would have told you were out of your ever loving mind! The change in him that finally began to take place was nothing short of miraculous. His attitude did a complete 180 degree turn and he began to feel much more optimistic than I have ever seen him. 

I'm talking like night and day changes in his ability and willingness to cooperate. So much so, that it seems to good to be true. It's sad to say that I keep waiting for the other shoe to drop, but I'd be lying if I didn't admit this. When you've been living in a war zone that suddenly turns into a resort, you can't help but wonder where the land mines are hiding.  For now, I'm just trying to ride the wave. 

This past week, we started a trial run at a group home. Am I in love with it or even the idea of him being there? No, I am not. I will admit, I am a bit of a snob. I want nothing but the best for my children. Hence they are so freakin spoiled! This is coming from a girl who was raised in government subsidized housing, but our house was spic and span, comfortable and cozy.  We never had a hungry day and we were often the best dressed kids in school. (That is at least until I started buying my own clothes. My mother would say that I dressed like a gypsy. But whatever... I digress.)  

My dream for my son was for him to move out into an apartment or a dormitory. At the very least, a Transitional Living program for adults on the spectrum. I don't know who it is that can afford these astronomically, expensive programs like the ones that I found, but good Lord, they must be very well off to be able to afford costs anywhere from forty to one hundred thousand dollars per year! 

A group home was not a part of the dream, but it is what he needs right now.  We had to do what was best for our family,  even if this isn't what we dreamed of being able to provide for him.  

We are hopeful that this is a springboard for further independence.  I am praying that he will stay motivated to finally get a place of his own or at least with less support someday in the near future. 

We still have a few kinks to work out with the agency that runs the home. I am not all that impressed with the staff so far, but I know my standards are high. I'm sure they aren't used to parents who are involved and knowledgable about what they are supposed to provide. I am not the one to try skimping on.

We have seen him a number of times this week, while we are working out these kinks of transportation and making sure that he has the things that he needs. Another positive, is that the place is very close to us, so we can see him and ensure that his needs are being met.

For now,  it's not the ideal situation but it is so much better than the life we were living just a few weeks ago. I am just trying to enjoy the peace in my home. I can close my door at night and not worry about anyone bursting through it with an immediate need. Blue is  more self-sufficient and he knows when it's time to leave mom alone. I am off duty at 9 p.m. Don't ask me for anything unless you're dying. 

The really good news is that Red is feeling better, physically and mentally. He is optimistic about his future for the first time in years.  It has only been a week so far, but when he comes home to visit, we can actually enjoy his company. 

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Now that Red is out of the house ...I'm actually trying to read a real book! I'm reading Elizabeth Gilbert's, "Big Magic." So far I love it! Click here to check it out: