Monday, June 6, 2011

6/6/2011





The school year will soon be coming to an end and our little guys will be moving on to Kindergarten. I can't believe we've been battling autism for 4 years now. Wow! Initially we started this blog because Tyler was in so much therapy, studies, etc. it was hard to keep therapists and family up to date on everything that was happening. As intended, things have leveled off a bit. I think our story is similar to so many others. Suspect autism, get a diagnosis, hear about amazing recovery stories, fight with everything you have and hope you are one of them, exhaust all your resources and energy, and then some years later, settle into acceptance. I hear this from many parents. We just talked to some friends about it this weekend. Although we had hoped Ty would recover and or improve to the point he could be considered high functioning, we knew his chances were lower than some others. Ty was diagnosed with moderate to severe autism at 18 months. He has severe apraxia, he is completely non-verbal and struggles to eat enough food to keep his energy up if he doesn't have somethign to distract himself. He doesn't sleep well, he doesn't interact with peers well, he isn't potty trained and he can't even fully dress himself yet. He can't write, doesn't care about coloring, and he's obsessed with spinning objects such as cups or frisbees. What's crazy is that this description of my guy could be applied at 18 months and today. This is not to say that he has not improved dramatically and that we've given up all hope, it's just to say that we have accepted autism as a part of our lives, forever. It will be part of our lives. That's a really really hard thing to accept and to find peace with. So although it seems to be something that would be simple, it's not. Because the guilt that comes with attempting to accept is overwhelmingly painful. There are still days when I am workign with Tyler on speech adn I see him pull on his mouth and stretch out his neck as if he's trying with all of his might to get out the word and can't. IT BREAKS MY HEART! Then I think, why on earth did I cancel private speech??!!!! What if we are only one speech session away from what seems impossible.



I've often thought about how much I'd love to turn this blog into a book, even if for just our immediate family. So that one day Tyler can see how hard we fought for him and loved him, so that Ben can have an understanding of how I was so often conflicted with guilt for not giving him as much attention but that I love him so much. I think about this blog and remember very clearly intentionally leaving out some of the ugly stuff. The blog was for therapists and family to learn about Ty and sometimes the heartaches and ripple effect autism can have was just too much and too personal to put into a public blog. I think if I turned it into a book, I'd add those all back in. The pain was so vivid that I remember it all as if it were yesterday and thinking about it makes me cry. We've lost friends, we've lost family, we've lost what was once a great marriage, we lost our dreams, our savings, our credit, we lost our home, we lost our dog, and at times, lost all hope. I realize everyone has hard times, absolutely, and I realize there are plenty of people out there who have it far "worse" than I do. I just think that many close to us would be surprised to hear about all of those ripple effects.



One of the biggest reasons I'd like to read the book, to remind me of how hard I fought for his recovery and that I did do everything possible, that it's ok to relax and focus on teh family that it's ok if he's not in speech therapy because he gets it in school. Ive been feeling incredibly guilty about Tyler not getting into splash camp this year, we are on a waiting list. I was waiting to apply until we found out what the summer school hours/schedule was this year and to hear back from the ELKs regarding our grant application. we couldn't afford it quite honestly and sure I can add more to the credit card debt but making all those payments is what is killing us now and preventing us from being able to move forward as a family. Steve and I agreed just over 4 years ago that we'd fight like nothing we've ever fought for, set our marriage aside to help Ty, so we could intervene early as all the researchers recommended. We agreed that around age 5 we'd slow down and recuperate. That's what we are doing... it's hard. Ty's reinvented fascination with cups and spinning has me a bit sad, but I'm not stopping him. I am learning to be at peace with just letting him be Ty. At some point I just have to learn it's ok for him to have autistic traits because after all he does have autism. what I care about most is that he is happy, healthy, and has a way to communicate. He is all of those things. I want to read the book to remind myself that i've helped him have those things. He can leave the house now and be happy about it. He can eat by himself. He can use a computer to talk. He can go to a grocery store without melting down (ok most of the time), he'll try new food, he'll play outside and stay near by. He understands most of everything you say to him. He's a very loving happy boy who is moving up to a level 2 classroom next year. I can dream of the possibility of a level 3 by the time he's in middle school and the possibility of friends, perhaps a job and some independence:) That's the difference from 18 months old. He was not a happy boy, banging his head against the ground, the chair, melting down, etc. we've given him happiness! Reading the book would help remind me to let it all go, we did accomplish our goals.


Look at the happy faces in these pics. Have we done well as parents? :) I think so. So once again to all of you who have stuck by us through thick and thin, fights, tears, etc. THANK YOU!!!!!



xoxo