Let me preface this all by saying, as I begin to share more of the story of where our rare disease story has gone in the last two years, I have talked with my son about sharing. I say our story and in many ways it is, but for me to share I also am sharing his story. I started my advocacy journey to help my boys, branched out to help others with conditions similar to my boys, but if I lose sight of what my boys are comfortable with than I lose the foundation I started from. My son knows that as I share what I am learning, and as I am trying to help others moving through similar situations, I am sharing his story and has given me the okay to do so. He is strong, he is brave, he is my hero - and why you will often see me use the #Igavebirthtomyhero
Today, I will give a very high level look of what we have been through and in upcoming blogs I will dig into details and some of the ways we ware working through we are with things. So, if it seems I am missing a lot of details - this is a blog and not a novel....
Our son, who is now 21, had always had some sensory issues. My advocacy began in a support group I started at Children's Hospital of Wisconsin in 2007 for parents of children with Sensory Processing Disorder that went on for close to ten years!! Over those years we also added in diagnoses of ADHD and of anxiety, he saw therapists and we added in a little bit of medication. Twice in his late-elementary/middle school years he was evaluated for autism. Now, the spectrum at that time was different and not really a spectrum and both times he missed one box from being diagnosed with Aspergers. There is a reason I share all of this now.
In 2015 he was diagnosed with Addison's Disease in an adrenal crisis that nearly took our younger son from us. We had seen him getting sicker and sicker, had been working on treatments with an amazing pediatrician, but honestly no one considers a rare autoimmune disease in a 12 year old who had appeared healthy just six months earlier. When we got this diagnosis, I questioned if he every really had ADHD or if he was really suffering the brain fog that comes with low cortisol (brain fog is just one of many symptoms from your body not producing this life-sustaining hormone). I even went on a radio show with the endocrinologist who diagnosed him to discuss his whole case and how he may never have had the underlying ADHD.
Teenage years were rough for our son. Some of it was brought on naturally by have a life-threatening chronic illness, some brought on by a teenage boy making some pretty stupid choices, much of it a contribution of both. All of these contributed to a variety of mental health issues. We dealt with the bad choices - not going to go through all of that here though his were magnified, I believe by the other circumstances, but that does not take away the fact that he made those choices.
What I will say still effects him to this day is learning that so many he was told would be there for him and that he could trust were not. It started with his club soccer team. He was an elite player on a select club in the state we lived in a year prior to getting sick, obviously as he got more ill, his playing suffered (one practice he literally vomited twice then went down and did all he could to push through - he nearly died less than 10 days later). The club preached family, but when one of their own got that sick and eventually had to leave under these circumstances they offered him a signed soccer ball from all his teammates. This was his first taste of those in authority who were there to care, teach and nurture turning their backs when the rubber met the road. I will say they now seem to do a much better job, but delete every comment I make alluding tot fact that it has come a long way.
He had teachers who literally took still pictures in class to prove to me that he was not paying attention (how does a still picture of a 13 year old staring straight ahead show me anything?). That same teacher said "What, you going to go tell your mommy on me?" in front of his whole class. He was told by multiple teachers that he was stupid and lazy - yet when I fought three times for an IEP (even bringing in an advocate who knew more about that) he was denied that help - he just wasn't trying hard enough. Another teacher even went so far to tell his first little girlfriend that she was making a huge mistake spending any time with him because he was worthless!! Again those who should have supported turned their backs, actually worse, actually kicked him while he was down.
This all continued until my husband and I made the difficult choice to pull him from public school. He still took a couple classes there so he could play high school soccer - that coach had the right mix of compassion, while hold him accountable on and off the field for his actions and I have just recently again thanked him for that. But all of the others in his life who were supposed to be there again had added to him not feeling great about himself and life in general so we were now facing some pretty serious depression on top of anxiety. His body reacted in an unusual way and he began having non-epileptic seizures. Friends, who had stuck with him - probably because he had been lonely enough that he would do whatever they wanted to keep friends now turned their backs on him and bullied him with complete hatred. His life spiraled.
Now my husband and I, in the midst of the pandemic made the choice to move 4 states away and give him a fresh start. All fo this was great until it wasn't....
And now after a year and half has passed our son is still traumatized from this. In a nueropsych eval in addition to panic, anxiety and depression - his IQ has fallen, executive functioning as at 3rd percentile and he now checks every box on the autism spectrum though they will not give that diagnosis because he did not qualify for it beofre 18. We have been told he will mostly likely not live independently. When I asked for this eval I thought I would be told "Mom, you need to push harder, stop babying him." Instead we were told to fight for conservatorship, work on getting SSI/SSDI and pretty much change the way we thought of our future.
But our son still fights. We are not getting conservatorship at this point. He is working with department of vocational rehab and looking at returning to community college with accommodations in place to help him succeed knowing what we now know. He has picked an avenue and we are putting things in pace for him to shadow that position first. He is working on bettering himself in many ways - some days it is just getting out of bed, some days it is helping me around the house more and some days he Door Dashes for an hour - on the best days it is all three and a Bucks win!! He is not giving up and you all know I am not either!! I am going to continue to advocate like a rare mother.
This is long, but I wanted to write it all out - I will fill in details, I will share resource, but I felt that sharing it all up front makes the details make more sense....
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