Some days it just really pulls on my heartstrings to send Jacob away on the little yellow bus, watching his sweet chubby face through the tinted window as they head down our street and off to school.
You'd think I would be used to it by now- it has been five years of Jacob leaving home for preschool, kindergarten, and now 1st grade. Despite the fact that all these years have gone by, each time it is still like sending an innocent toddler away everyday, out into the big, bad world alone, without me to protect him.
I went to his school today, to register Tyler and Madison. Our move next week puts all three of them in the same school for the first time. I feel some comfort knowing that his big brother and sister will be there with him from now on. Defenders, if he ever needs them. My children, siblings, all born from love and with the same carmel skin and soft brown hair, yet miles and miles from being the same.
While I was there I stopped to watch him for a few minutes, through a small window in the classroom door. He was sitting at his desk with an aid across from him and it looked like they were working on IEP goals. I saw her lifting her arms and wiggling her fingers in the air, trying without success to get Jacob to imitate. She gently nudged his chin up, so that he was looking at her fingers above him, and finally he half lifted his arms, and slightly moved his own fingers.
The lovely aid smiled and clapped and I saw her lips saying, "Good job, Jacob." And while I was pleased to see her kind and patient interaction with my son, my heart felt a little heavy. Raising arms, wiggling fingers- so basic and simple. But for my child it is something that must be coaxed out, praised, and rewarded, and it felt like watching someone train an animal.
Does that sound cold? It feels cold. All these years, five since he first started in the Early Intervention preschool. Hours and hours of therapy and discrete trials, and it is still a struggle every single day to get him to respond to something so menial.
When Jacob got home today the note in his backpack said he responded once to the "my turn, your turn" trials. That is what I saw through the window. The one success. The three seconds where he seemed to understand what was being asked of him. The half-effort he gave to accomplish the task that means nothing outside of his classroom. Raise your arms, wiggle your fingers, receive a smile.
How long must we keep doing this? For the rest of his life? For the rest of mine? I have grown older than I should since autism came, aging and tired beyond my 32 years. And Jacob has gotten no where. I feel like I am two steps away from being the one who rocks and moans and ignores the world as it turns around me. Would that be safer? Less disappointment, less pain? Would being autistic protect me from what hurts?
I love this boy. So much that it seems he is a part of me. My heart. My bleeding, breaking heart.
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Comments
Thank you for your posts
Your posts are resonating with me so much, I had to write something...
My son is 2 1/2, diagnosed with Autism 3 weeks ago. I am 32, I work full time, and have a divorce hearing in 3 weeks because my soon to be ex-husband had decided that we weren't right for each other anymore and moved out last summer. One of the major reasons for arguments was that he thought that nothing was wrong with our son. I knew something was, I was determined to find out, and it turned out that I was right.
Will's scores were too low for the doctors to determine where exactly he is on the spectrum. Some of it was due to his young age, some to not willing to cooperate, and some to just being low functioning. He has been doing the ABA therapy every day since January, 3 hours a day. My Dad is sponsoring 100% of the treatment - I don't know what I would do without his support.
I have no family in the area - they are all overseas. The only person I can rely on here in the States is Will's nanny... A 60-year old Colombian woman, to whom I owe my life.
I don't know how to live with Will as a single parent yet. I never know what my day is going to be like.. I don't know what my life is going to be like. I don't know what Will's life is going to be like. I dont know if I can handle all of it.. alone.
I didn't chose any of this - autism, divorce, all at once. So much pain, loss, disappointment. I am scared... No, I am terrified.
I know that I need to be strong and just keep on going and doing what's right for Will. And I do. But then occasionally, I ask myself the same questions you do.. Sometimes I too wish I were autistic so that I could understand my son. But then I feel terribly guilty for being selfish and thinking of myself.
Thank you for your posts. They mean and help so much.
Marina
Thank you. I'm glad you are
Thank you. I'm glad you are here. :)