Kristenrn0415
New Member
Good morning.... I don't even know where to start.
My 16 year old son has had an ADHD diagnosis since he was 7. He's had a psychiatrist and various therapists since that time. He's been on many different medications since then. He has been on the receiving end of terrible bullying for most of his life and, in 7th grade, we had to pull him from the public school system because he was suicidal. He's been in online school since then.
Over the past four years I've noticed more and more that he is increasingly different from his same-age peers. I tried (for years) to convince his psychiatrist that he needed a new neuropsych profile but it took til two weeks ago to get him evaluated. The feedback appointment was three days ago and he was diagnosed with (word for word from the paper) "Autism Spectrum Disorder, Level 1, "requiring support", without accompanying language impairment, without accompanying intellectual impairment". He has a lot of social problems. He can't interpret what other people are feeling, can't see any perspective other than his own, HUGE reactions to big feelings, interests that are very unique and intense....it makes it so hard for him to make/keep friends. He has exactly one person he feels like he can talk to and who I would consider someone who is actually a friend. It's everything that is so typical of being on the spectrum.
We applied for medical assistance last month and were approved, but the psychiatrist filled out the forms and it reads that my son is permanently disabled. To me that means that he'll always need help and support. I don't mind that at all. It's just that label. Permanent. Disability. I hate hate hate the ableist terms. How about "differently abled"???
We (my husband and I) are trying to figure out where this goes from here. Having a new label to describe how he is doesn't change HOW he is. It's just a description of what we already knew. Right? But I don't know what to do or what standards I should be holding him to-- I think we've tried to hold him to neurotypical standards and that's been pretty unfair. I feel terrible about doing that....and I feel terrible for not pushing the re-evaluation harder for the past four or five years....I wonder if the difficult pregnancy factored into this, or if the prolonged labor, or the prolonged delivery. I have a lot of guilt about the "should haves".
We don't have the recommendations yet from the team that did the evaluation. In the meantime (the next few weeks), what on earth do I do???
My 16 year old son has had an ADHD diagnosis since he was 7. He's had a psychiatrist and various therapists since that time. He's been on many different medications since then. He has been on the receiving end of terrible bullying for most of his life and, in 7th grade, we had to pull him from the public school system because he was suicidal. He's been in online school since then.
Over the past four years I've noticed more and more that he is increasingly different from his same-age peers. I tried (for years) to convince his psychiatrist that he needed a new neuropsych profile but it took til two weeks ago to get him evaluated. The feedback appointment was three days ago and he was diagnosed with (word for word from the paper) "Autism Spectrum Disorder, Level 1, "requiring support", without accompanying language impairment, without accompanying intellectual impairment". He has a lot of social problems. He can't interpret what other people are feeling, can't see any perspective other than his own, HUGE reactions to big feelings, interests that are very unique and intense....it makes it so hard for him to make/keep friends. He has exactly one person he feels like he can talk to and who I would consider someone who is actually a friend. It's everything that is so typical of being on the spectrum.
We applied for medical assistance last month and were approved, but the psychiatrist filled out the forms and it reads that my son is permanently disabled. To me that means that he'll always need help and support. I don't mind that at all. It's just that label. Permanent. Disability. I hate hate hate the ableist terms. How about "differently abled"???
We (my husband and I) are trying to figure out where this goes from here. Having a new label to describe how he is doesn't change HOW he is. It's just a description of what we already knew. Right? But I don't know what to do or what standards I should be holding him to-- I think we've tried to hold him to neurotypical standards and that's been pretty unfair. I feel terrible about doing that....and I feel terrible for not pushing the re-evaluation harder for the past four or five years....I wonder if the difficult pregnancy factored into this, or if the prolonged labor, or the prolonged delivery. I have a lot of guilt about the "should haves".
We don't have the recommendations yet from the team that did the evaluation. In the meantime (the next few weeks), what on earth do I do???
