Every June the fear of "summer" creeps into my house. Days are longer, no routines, daycare goes crazy, everyone is holidays. I'm sure others have gone through this dreadful time too. This year has been a little harder. With Nik starting a new school May, finishing off the year was exhausting. Adjustments at daycare, new house, ect. Since starting daycare he's now on his second 1-1 worker. School ended on a irritating note. Summer has been insane with all the activities. On that note though, he's had a blast. He's gone to fun mountain, the zoo, met the goldeyes, weekly trips to splash pads and library, slurpee days, built a lemonade stand. Very good summer. So with the brief on our summer, there has also been problems. Nik's had trouble adjusting to the long days, everyday. No therapies, no supports, no routine. We've backtracked to the point where he's hitting again, name calling, lashing out at random. Err does it ever stop?
Summer is quickly ending which I'm personally happy about.Get back to routine, back to support? back to school, bring on September!!!! I really want to clarify and put my input on some issues that I am continuing to see, face, and read about. We are approaching grade 1, NO PLAN is set up for the school year. Although the Dr's have made request, 18 months NO SERVICES! I understand there is standards and policies ect. I've said in the past, for inclusion to work it needs to include everyone. The government announced a new program called "Thrive". YA!!!!! Oh wait, your gonna help preschool? Adults? Shorter ABA wait lists? :O AMAZING. Oh crap, my son doesn't fit into any of that? He's not severe?he's too old/too young? hmm so now what? Now calm down, I'm not totally knocking the program. Although I think it's a little too early to throw a party for it just yet, my concern is this, There are CHILDREN who are SCHOOL AGE, who are not severe but mild or moderate. What is for them? I can't count how many times I've been at a meeting, info session where they look at me and say " Sorry he's not Autistic enough".. Now this announcement will help A LOT of people which is great if it gets off the ground. Now what's the plan for the people it doesn't help? I'm not the only person who's falling in this "not autistic enough" class. It's like we're on the Titanic and we're the lower class that's gonna go down with the ship. What are we doing wrong?
Parents, teachers, school boards, doctors laugh when I tell them what's happening. For those that new, here's a quick 101: Nik first went to CDC at 2. After 2.5 years of back n forth we transferred to MATC. Finally summer 2010 got the CONFIRMED PDDNOS. Now from 2008-2010 we had 1-1, speech, ot, CDC, everything. The early intervention was AMAZING. Starting prep for school(what a nightmare) and that's where the world gets fuzzy. Since Feb.2010 I have learnt that NOT every school is the same. NOT every child gets help. Having a DX doesn't mean CRAP when it comes to the school. In my experience and from what I've been told unless there is behaviour problems or severe medical, funding is NOT THERE. There are different classes, "severe", "mild/moderate", "normal". Really there's only two in my experience. Either your severe and get some assistance(although it's not always great), or your normal n get NOTHING.
I don't expect the world to bend over back for my child, however I do expect him to be given the tools and opportunity to succeed. Does he need help? Yes. Point blank. He can't sit in a class all day alone and understand what's happening. He doesn't understand changing from subject to subject. He has NO clue when it comes to the subject of Language Arts. Give him numbers and he's got it under control. He will not raise his hand to answer a group question cause the spots on the ceiling are more interesting. throwing a paper at him and giving him 15 instructions he's lost. had you said get your purple crayon, now make a circle, now make 2 eyes, would understand. he can't process visual and auditory at the same. However here that's how teachers teach. I guess my anger comes from the fact that, schools and the government are helping others. Have you seen the budget to TEACH ENGLISH? to new comers? Yes it's a very important tool, totally worth the money. Ever notice how much money Canada/Manitoba sends to other countries to help people there have clean water, get a education ect? Just saying, something is little off when we can help everyone but the people that are right here in our backyard.
So I'm sure I've irritated some of you and I don't apologize for that. I apologize to the many children who are being left on the side. I apologize to the MANY parents that are sitting in the same sinking ship as me. I'm sorry that I am one person and I can't find that damn machine to make a cure all pill. I'm sorry that your trying to find a band aid big enough for Autism but shoppers is all sold out. I'm sorry to the parents who have a "normal" and "different" child. I fully understand how hard it is to spend equal time with each. I'm sorry for all the children with speech delays that can't have a voice for someone to hear. I am not, nor will I ever be sorry though for someone not agreeing with me, or thinking that my child DOESN'T need the help. I am NOT sorry to the people who see the world as black n white because if you open the window there's a lot of pink, blue, green, and purple all around us. I will never stop fighting for my child, and all the other children who doesn't fit.
Love all of your supporters and one day our little ones will rise above.