autism, parenting, Uncategorized

A Lonely Road

April is Autism Awareness month and I’ve decided to share in a few posts about our journey through autism.

It can be hard to explain what it is like to parent a child with autism. It can be quite a lonely road to travel. Maybe it is my own fault for not being more proactive to find more friends with special needs children. I’ve joined a few online groups made up of parents that have children with autism but rarely get anything from the posts or conversations. Some of these parents have very different views than I do. Some have very out there ideas about what caused their child to be autistic. Some parents are very opinionated about medications and therapy. I am non-confrontational and choose not to engage in discussions where I know I will not change their minds nor will they change mine. When it comes to what I believe is the “right thing” to do for my son I don’t need anyone who doesn’t know my son telling me what I should do.

I see parents every day when I drop and pick Noah up from therapy but I have yet to connect with any of them. The brief time that I’m there doesn’t really allow for making friends anyway. The waiting room is a little chaotic. The children there are all very different, some more severe than others. I have so much empathy now for special needs parents who are dealing with their day to day challenges. Some have it much harder than I do and I try to keep that in mind on my tough days. There are children older than Noah who still aren’t potty trained. There are kids that hit themselves or others. Some that are completely nonverbal. I could go on and on. So many parents like me avoid going to crowded and noisy places for fear that their child could have a meltdown. Noah has had those public meltdowns and it is awful. I could see the judgmental stares and see people whispering. Some parents have children that will run away or wander off. Noah wouldn’t run but could easily wander away from me. One of my fears is still that Noah would get lost and not know how to tell an adult my information to find me. We’ve been practicing him knowing my name and phone number for a year but he’s still not consistent in answering that. Noah lacks some of the basic fears that other children have. Noah is generally not afraid of strangers and could easily walk off with someone that just took his hand told him to go with them. If someone hurt Noah he wouldn’t be able to tell me who it was or what they did. It is so incredibly scary to be out where I can’t keep him in a little bubble.

Most of our friends and even our family can’t understand what I go through on a daily basis. They only know what it’s like to parent a typical child. They don’t see the lows and the days that I feel like a failure. They don’t share the same fears that I do for my son. I don’t feel sorry for myself or want other people to feel sorry for me but I do wish it was easier for people to understand the daily struggles.

I often see where autistic parents say the words” I wouldn’t change my child at all”. I know at some point in a post on IG or FB I probably said something similar but I can tell you that I was lying. The truth is that I would change some things. I’m not saying I would change his personality. He is so incredibly sweet and I cherish how affectionate he is. I love that he loves to be outdoors and how much he loves bugs and animals. But despite my love for him I would change a few things. I would want to have just a simple conversation with him. I would want him to be able to understand the questions I ask him and hear his answers. I wish he could tell me what is wrong when he’s upset. I wish he could be able to interact with other children and have friends to play with. I wish I could ask him what he’s thinking when he’s quite and staring off into the sky. I know that he is constantly improving his expressive and receptive language and I can only pray that day may eventually come.

 

~M

 

 

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autism, lesbian family, supportive, Uncategorized

Making Autism Look Good

April is Autism Awareness Month and I have to take a minute to talk about our sweet boy and his journey.

Three years ago I knew very little about autism. We didn’t know that 1 in 68 children are diagnosed with autism, boys are 4 times as likely to have it and early intervention is key. I had all the typical assumptions that autism was a disorder where the child made no eye contact, had melt downs, non social, not affectionate, and a child locked inside themselves. The truth is that autism can present itself differently in every child diagnosed. We have learned Noah is all about eye contact, has very few melt downs, is very social, extremely affectionate, and is not locked inside himself at all. But we did learn that he had many of the classic early signs of autism.

Noah was a happy and healthy baby. He was developmentally on track and met all of the milestones that each baby achieves in the first year. When it came time for his first words we waited patiently but they never came. He babbled a lot but still no words. This was our first sign that something was wrong but just assumed that he would just start talking in his own time. Our next sign was that he did not answer to his name.We thought that he was just ignoring us and being stubborn. At one point we even thought that he might have a hearing deficit. Then our next sign was when we noticed he wasn’t playing with toys like other kids his age he was fixated on lining them up and organizing them by color or size. He wouldn’t point to anything he wanted. He wouldn’t mimic our sounds or facial expressions. He couldn’t understand simple directions and it would always upset him when he couldn’t do what we were asking of him. Large crowds and loud environments seem to overwhelm him. He loved to dump everything he could get his hands on: cups of water, baskets of clothes, boxes of toys, etc. He would him or sing the tune over and over again to songs he had heard on movies.


 
 At his 2 year check up my heart sank as we answered no over and over again to the questions that they asked about what he was able to do and say. Realizing just how far behind he was developmentally. I remember crying as we left his appointment thinking this was something that I could have prevented or done more as a mom to help him. But the truth is that there is nothing I could have done. We were referred to our states early intervention program. They came to our home to evaluate him and  determined that he had significant development and speech delays.  He also had sensory processing problems. We began speech, occupational, and developmental therapy. We slowly started seeing progress. Two months before his 3rd birthday we finally received his official diagnosis of autism.

 They strongly encouraged us to put him in blended pre-K class at our local elementary school. As hard as that was we did it and he has just bloomed since then. He is talking more and more. He knows his colors, shapes, letters, and numbers. He can identify body parts and animals. He still struggles with expressive and receptive language but we are making progress. He can tell us when he wants to eat or wants a drink now but has trouble telling us other things that he wants or needs. If he has injured himself somehow he cannot tell you what hurts or where he is hurting. He is getting better at understanding directions and things that we are asking of him but that is still a daily struggle.
Being a parent of a child with special needs is something I never imagined I would experience but here we are. It’s our new normal. We celebrate all of his progress and all of his successes no matter how small they may be. We don’t take for granted that he is such a loving and sweet soul. We adore him and would never change him.

We are beyond thrilled with his progress and know the reason he is doing so well is because of early intervention! I can’t say enough to parents about seeking answers when you see red flags. We can’t wait to see what the future holds for our little guy! We know he’s going to do great things and continue to teach us about the beauties of autism!
***He still sings all the time. He loves singing his ABC’s, Head Shoulders Knees and Toes, Twinkle Twinkle Little Star, and many other nursery rhymes. I’ve added a few short videos of him singing and talking.

 

 

 


~ M