One is the weight of autism.
Wherever you are in the journey you can still feel the weight of having a special needs kiddo. And the weight of the unknown. Sometimes I can’t breathe because I am so scared.
Another is the loneliness.
And I don’t mean loneliness in the sense of physically being alone because I am never alone. Hell, I haven’t pooped alone in 4 years. My lonliness is different. It’s more about not having stories to share with other moms about Cooper. Or watching other kids join in a game and Cooper is feeling the carpet. And it’s most definitely the loneliness of never hearing about Cooper’s day. Riding home insilence. Every day for 4 years. That shit is lonely.
Another biggie is the time factor.
For other kids the milestones fly by. Boxes are constantly being checked. Not a day goes by where my two year old isn’t learning something new. And then there is Cooper. I don’t know if he is learning. He has been doing the same activities for years. I have this memory from years ago of telling a friend that Cooper loved Thomas the Train. And she told me that children should love new things every year. They shouldn’t keep the same obsessions for years on end. I remember thinking GREAT. Another thing to worry about. And then I laughed because I was happy he at least liked SOMETHING.
My logical side knows Cooper is moving in the right direction. But, I also know that he isn’t running through the milestones. And he probably isn’t crawling either. But, that little stinker is scooting right along at his own pace.
Cooper is 2 months shy of 4 1/2. He was diagnosed on the spectrum in September 2014. Prior to his diagnosis he received speech and occupational therapy. Neither were effective and probably did more harm to me than good.
In October of 2014 Cooper started receiving day treatment services at an Autism Center called Fraser. He rides the bus and attends for 3 hours, 5 days a week. Shortly after he got accepted to an autism preschool at en elementary school right by our house.for 3 hours a day, 5 days a week. He also rides the bus to and from. And he loves it all.
He loves watching Dora the Explorer, Dinosaur Train and Thomas. His favorite book is Brown Bear, Brown Bear. He still loves singing songs.
He has numerous teachers, therapists, bus drivers, aides, etc. And ALL of them say the same things about Cooper:
He is unbelievably sweet. He loves to hold hands and snuggle. He wants to be held and hugged. He is very timid. He refuses to try. He is extremely smart. He understands everything we say. He wants to communicate. He is definitely autistic. He has amazing eye contact. He craves attention from adults. He doesn’t notice children. He has mastered waving. He is learning to play. He is very social. He checks in with adults.
He still has no words. Family and friends swear they have heard ‘yes, no, hi and more.’ He only says vowels and on command will make the ‘h’ and ‘m’ sound. The kid wants to talk.
According to his teachers he knows his colors, shapes and learning his numbers and alphabet. They have no worries cognitively.
Yesterday, in a two hour span, he communicated that his milk was leaking, he wanted juice, he wanted jelly beans, his diaper was wet, etc. The kid has amazing nonverbal communication. And for that I am thankful.
There are lots of tough moments too…He isn’t potty trained. He doesn’t dress himself. He doesn’t use silverware. He eats less than 10 different foods. He will only use one type of sippy cup. He will only drink milk or juice. He only wants to watch his movies. He has started doing some repetitive behaviors. There is still lots of whining. And he hates doing anything new.
Now for me.
I have an autistic 4 year old who doesn’t talk. I also have a bubbly, energetic 2 year old who is starting to figure out his brother is different.
I haven’t cried in months but my heart is still broken.
I am starting to accept this. I am still very angry and jealous.
I don’t recognize the person I was pre-Cooper or pre-diagnosis.
I’ve been hearing a lot of stories about autistic kids that talk at 5. Sigh. The thought of doing this at 5 exhausts me. I refuse to get my hopes up for age five because I had HUGE hopes for age 4. And the night before Cooper’s 4th birthday I felt a new level of depression.
I am also sick of telling people that I am NOT negative. I am just very real.
I still spend hours wondering if he will ever make a friend. And wonder if I will ever hear his voice. I dream about hm talking quite often.
When I read about autism or listen to people talk about autism I spend the whole time thinking, ‘but mine doesn’t talk.’ And then I wonder if I have the only one like that.
And lastly, I wonder if I am going to make it through. If I can truly accept Cooper’s diagnosis and future. Trust me, I know, there is no other choice but sometimes I wonder.
I talked to an amazing woman last week that said it took her almost 5 years to find acceptance and peace. I have 6 months to go. Hell, I can do anything for six months!