I have decided that it was, once again, time to blog. Things have been very complicated since I last wrote. Being a mom is hard enough, but being a mom of children with special needs is all-consuming. It definitely affects that whole social butterfly aspect!
Yes, you guessed it - this is going to be a completely selfish post! I have been reading the book 1001 Tips for the Parents of Autistic Boys on my e-reader (the girl version seems to be non-existent online - even on the author's website, though I saw it at the Barrhaven Indigo Book Store), which says that parents are allowed to wallow in self pity, but for no more than 72 hours at a time. So consider this part of my 72 hours.
My second daughter was FINALLY officially diagnosed with PDD-NOS (Pervasive Development Disorder - Not Otherwise Specified, which is part of the Autism Spectrum Disorders (ASD)category). Last year, she had a working diagnosis of ASD, but as it was only a preliminary diagnosis, no one seemed to take it seriously. Not to mention,we didn't qualify for the support programs that we so desperately need (therapeutic, financial, emotional support). So, I should be happy that we finally have an official diagnosis, right? Instead, I am overwhelmed with thoughts of the the struggle we have ahead of us, as well as all of the time lost. You see, my daughter is 14 and quite unwilling to even discuss the diagnosis. I'm not sure how happy she is about the prospect of all of the therapies that were recommended: behavioural therapies (ABA, sensory integration therapy, play therapy), social skills training, speech and language therapy, occupational therapy, music therapy....the list goes on.
She also has a "global" learning impairment and possible dyslexia. Now that I think about it, I don't blame her for not wanting to discuss it!!!
I am angry.
I am angry that despite years of trying to get a real diagnosis through the school board, she finally got a private diagnosis at the age of 14.
I am angry that she could have had a happier childhood, in which all of the therapies could have helped her fit in more and better control her emotions.
I am angry that my other children have had such a crappy childhood because of this. They have had to deal with the emotions as well, with the meltdowns, with having to watch as the whole house revolves around one child. Her older sister's life has been greatly affected by this, causing great anxiety and sadness (I will save that for another post). The younger children have been exposed to things that I would prefer to shield them from.
I am angry that I am virtually alone in this. My husband sees it as a behaviour problem and that she is just being rude for the sake of being rude. He doesn't understand the feelings and reasons behind her actions, moods, and just plain quirkiness. Yes, she can be rude - she is a teenager afterall, but she has exceptionalities that prevent her from helping herself at times. She has no filters. She doesn't have the ability to empathize or read the emotions of others. She needs help with all of that.
I am angry that her father seems to think that she is responsible for her own PDD-NOS. WTF? I even asked him if he thinks it's just her that caused her own PDD-NOS or if ALL children diagnosed with PDD-NOS are responsible for it. He said just her. I don't understand. I was completely baffled when he said that yesterday. How dare he even suggest such a thing!
I am angry that she was pushed through grade after grade when she has such a learning disability.
I am angry that the teachers don't seem to be following her current IEP (which will be changing, in light of the recent diagnosis, so I have little hope for them to follow a more in depth one!)
I am angry at the school system that wouldn't help properly when they were asked.
I am angry at her doctor at CHEO, who only wants to give her meds, but not help with therapies or give me any resources whatsoever.
I am angry at a government system that allows a child to have to wait so long to get a diagnosis. TESTING SHOULD BE COVERED BY OHIP!!!!!! These children are the future, people! Take care of them, because one day they will be taking care of us!
I am angry at myself. Maybe I should have pushed harder for help. Maybe if we had more money, we could have done this sooner. Maybe I shouldn't have replaced my windows 5 years ago, but used that money for her instead. Hindsight is a beauty.
I am obviously still in the anger stage of the grieving process. On Monday, I will move forward and get copies of the assessments out to various places (school, psychiatrist - who won't do a damn thing, Service Co-ordination, family doctor). Until then, I'm taking a vacation from all of this. It's the weekend and I just feel like relaxing with the little ones.
