|Forum Home > A mother's view > Sunday, September 30, 2012|
I know it has been awhile since I have written but life has just made it impossible to find a lot of time. I try to get information out as much as possible but stress of raising an Autistic 9 year old takes a lashing on me lately. Between potty training my 3 year old and all the changes for Faith this year which has caused health concerns brought on by stress and many other issues, it has made us painfully aware that it never ends. We just get one thing under control and something else pops up.
Rob and I started ABA and took the parent portion to take the classes with Faith. im not the hopeul im afraid unless we learn it and do it as the lack of help available without funding... Which is never available, makes it virtually impossible to get her the help she requires unless one person works solely to provide the 2,000 - 3,000 a month in extra programs. That is just in occupassional therapy roughly 2 - 3 days per week. It does depend on the types of programs but wow, looking into the system and different programs, occ. therapist, respite workers, speech language pathologists, psychiatrist, social program's.... It's overwhelming... The child goes without as the parents can't afford the treatments. Now in ABA they are teaching us parents to be the therapists. I guess they do what they can with what they are given - at least it's something. It's scary to think of being responsible of it all though... I'm not a doctor... And I want to be Faiths mom.... I'm scared she will lose her "mom" though it all.
She's had a hard year already making herself sick, not wanting to go to school, doctors, emails back and forth all day long from teachers, special needs dept., office, principle, Octc, Cheo.... I'm slightly losing it. Notes, letters, paperwork..neverending... ! Driving her the one hour to school and being called in the middle of the day to go to her. She's fine when she gets up but the we say time for school bus and then crying in the bathroom, before school bus... I'm scared for her. She's been taking dizzy spells. Everyone has taken turn in differentbways trying to talk to her but she insists everything is fine but she has never really talked to anyone about anything. she did however mention it was a long bus ride, so could be it. Sometimes she'll eat sometimes she won't....I just hope someone figures it out. Been three weeks now and I need it to settle down, doctor apt last week and doctor was fantastic and talked to her and hopefully that helped and this week will be better. She has pictured day on Monday, so hopefully that talk helped. We bought her a new dsi xl game for the now 1 hour bus ride to school this year (half the problem) and were hoping it helps next week. They transferred her schools too until her new one is open, not smart. Also, I'm a little upset with the school occ. therapist coming 5 times a year for 5 mins at recess .... They will give us recommendations only. WHAT!!!?? That makes me want to transfer to the catholic board... My kids worth more than that.
Im so tired of all the fights.... Of the looks... Of trying to find 2 minutes to breathe... But what keeps me going is knowing... I'm not the only one. Like I always say, "life is the journey not the destination"
Karen - PADF