Our life with Autism- Update
It’s never an easy thing to hear a medical professional tell you that your son may not speak. That was one of my biggest fears for him, even with the diagnosis of Autism. I will always be worried about whether he can socialize or also be able to work full time and take care of himself. When his speech therapist told us that he might not speak because he has Apraxia of speech, we were so distraught. My heart was ripped in two.
Childhood apraxia of speech (CAS) is a motor speech disorder that makes it difficult for children to speak. Children with the diagnosis of apraxia of speech generally have a good understanding of language and know what they want to say. However, they have difficulty learning or carrying out the complex sequenced movements that are necessary for intelligible speech.
All I have been wanting is to hear him say, mommy, for a short time he would say dada, I know that Juan was so excited, but deep down I was so jealous that I wasn’t able to at least here mama. At night after I kiss everyone good night, he waits for me to crawl into his bed to do our night time cuddles. When he fell asleep and rolled on top of me and said “mama” so softly that I could barely make it out, but I heard it, and that’s the only time he will say it. When he’s sleeping, and I’ll take it!
Since he’s started school last January, he’s improved so much; he’s socializing more loves playing and it learning so much. His school has been tremendous, and we’re blessed to have a great team behind him. The saying that it takes a village to raise a child, which is so true. In our case. Our community consists of his Pediatrician, Speech Therapists, Occupational Therapists, Physical Therapist, Psychologist, Social Worker, Teachers, Assistants, family, friends and with all those involved in MJ’s development, we as his parents are the Major/ president of that town.
As his mother, even with all those people in our little town/village, there are moments where I still feel alone. I know it’s not true, but that feeling does still linger. He’s grown so much, and I couldn’t be more proud of him. I have a feeling that he is going to be an engineer or an architect. We learned with his Apraxia of speech that he would need an augmented communications device. We already have his IPad mini, which we have some apps that we use to help him communicate with us. We also use American Sign Language (ASL), which he finds more effective in communicating with us; this can be such an experience to have a child a spectrum.
His sisters are his cheerleaders B still considers him as a baby because he doesn’t speak, but she’s starting to understand that her little brother is slightly different from her. My oldest is his best friend; they have this insane bond that no one can break. She understands what Autism and reads about it, advocates it at her school, which makes me cry because she’s so dedicated to the inclusion cause. My stepdaughters are very protective of him when new people are around and watch over him. They all do.
Our new mission is getting ready for Kindergarten; there’s so much to find the right one for kids on the spectrum. There so much loss in funding, and these schools don’t always look great. We were on tour for a school, and one of the mothers took the words out of my mouth “This is harder than choosing a college” she was not wrong at all. We hope that we find the right school in time for September. Along with all the meetings and appointments with a specialist, that’s our life. Its crazy, fun, hectic.
