The Struggles Of Autism ~ Life In Our House

The Struggles Of Autism
Life In Our House

I had not planned this blog post. As a matter of fact I have been wondering what my next blog post might be about. This one kind of landed in my lap this morning. 

You see, I woke up this morning before my kids. Something that happens rarely because I am just not a morning person. In fact, on days the twin's father is home from the road I sleep in until 2 or 3 in the afternoon most days! However today was different and I got up early. I quickly made some coffee knowing my time to myself was short, and I pulled up my Facebook. On my timeline, I saw this picture. It is one of those "6 Years Ago Today" pictures. As soon as I looked at it I smiled, and then I broke down. I sobbed, I cried, and cried, and cried. All of a sudden I realized what has been weighing so heavily on my heart lately. I realized the reason I have been so quick to snap at my husband, the reason I have been so depressed, the reason I have been dying inside. I MISS THESE SMILES. 

These boys, 6 years ago today, were the happiest boys you could have met. Sure, Jacob has some odd habits. He lined toys up. He stared off into space. He was beginning to have some pretty big meltdowns, and he was very shy around other kids his age, but surely he would come out of his shell. Surely he was still adjusting to his age because he was a preemie right? NO, I knew that wasn't it. 

 I read articles. I watched documentaries. I watched YouTube videos for kids who showed even the slightest resemblance to what Jacob was going through. It all pointed to one thing. Autism. I thought to myself. No. No. It couldn't be. Could it? Not one in 88? (I think that was the number at that time)

I approached Jacob's father after many, MANY nights of scouring the internet. I told him what I found and asked him what he thought. He said I was crazy. I was overprotective. That I worried too much because the boys were preemies and spent so much time in the NICU. I figured maybe he was right....but my gut told me he was wrong. And he was. 

Skip forward a few months and I BEGGED for an Early Intervention appointment. This was NOT easy to get because Jacob was verbal. He had "some" eye contact, and would hold a conversation with the doctor. Apparently, this was not the typical signs of Autism. Jacob didn't "fit" they said. But with a YEAR long waiting list to see the developmental pediatrician, I knew we had NO time to waste. We got our appointment for the Early Intervention who quickly saw what I was seeing. They got us into our Developmental Pediatrician, and at school age, Jacob had his diagnosis. 

Fast Forward to today. Jacob's twin brother Brandon, also has Autism. Much milder on the spectrum, A little more high functioning. UNTIL recently. Brandon has started having the same severe meltdown's Jacob was experiencing. Brandon is lining toys up. Brandon is having a hard time focusing on his school work. You begin to wonder, is it me? Am I doing a bad job as a parent? 

The answer is NO. I have been to the best of the best therapists for Autism (Thank you Dr. Andrea Turner) and have learned AMAZING parenting techniques (I will admit, I am a normal Mom, I do lose my shit from time to time), and those techniques have gotten us through many, many years of horrid meltdowns, sensory issues, and a whole list of other Autism related issues most people do not even think about. But the ugly truth is, as hard as I work, and as many of those amazing techniques as I apply, our days still are not as easy, as full as smiles, as carefree, as they were just 6 short years ago.

I know what you may be thinking. ALL families go through changes. Kids grow older. They get tough to deal with. They get attitudes. Believe me, I GET that. I have two older children in addition to my twins. I have a 21 year old daughter who ran me through the wringer as a teenager. I have a 24 year old son who is STILL running me through the wringer to this very day. Those are not the changes I am talking about. I am talking about Autism changes, those changes are different.......much, much different. 

I have two 10 year old who are still in diapers (pull ups to be more specific) at night because they have yet to master night training. I have one ten year old who cries daily because he can't figure out how to ride a bike without training wheels and he doesn't want to practice because he is afraid kids might laugh at him. I have to give each boy a "secret code" to alert me in case the other twin attacks him while I am downstairs doing laundry. Each twin has no idea the other twin has a code as well. The code is to stomp on the floor really loudly so I can come running up the stairs. I don't shower anymore, I bathe. If I shower I might not hear the twins fighting (and when I say fighting, they literally may be fighting for their life) so instead I sit in a bathtub, with the door open so I can hear what is going on. I sleep lightly when their father is on the road working (which is probably why I sleep so heavily when he IS home) so I can hear if one of the boys is in trouble because one of them is constantly attacking the other. One twin is in his room most of the day. He doesn't like to leave the house. It is extremely hard to get him to leave. When he does leave the house, he likes to go to the park to try to make friends. He tries TOO hard and the kids don't like him. They think he is "weird", or different and don't want to play with him. One day I was on the phone with the children's father, and Twin 2 was at the park playing alone with some older kids at the basketball court. I was watching from our front window. All of a sudden I seen the older kids attack Twin 2! Full on, punching my son! For what? Because he is different? Because he is trying to fit in and befriend you?
I have a twin that can't dry himself after his shower because his sensory issues will not let him touch towels. One of the twins can't touch any brand paper towel except the brand that has the blue circles. So when I can't afford that brand, that twin can't touch the paper towels. Neither of them can use tissues to wipe their noses because of the texture of the tissue. I still dress both of them because they don't like to touch their clothes, and each of them wear two different types of socks because of the way the socks feel. There are numerous medications to remember. But remember those smiles? Those are rare. All of this stuff above is OK. I have learned this stuff by heart. I could go on for about 10 more pages about each twins likes and dislikes, which twin does what, which twin can tolerate what and which twin can't. 

What is not OK is them not being happy 100% of the time. I worked my butt off when they were little to make sure they were happy ALL of the time, and I like to think I still do today. ALL of my kids and my grand kids are my world. Their happiness is MY happiness. When the boys were little I used to get asked, "If you could take Autism away from your kids, would you?" My answer was always no. Autism was a part of them, and it was who God made them. Today my answer is a very different one. Today my answer is 100% YES. I would take it away. I would take it away to see those smiles return. To hear them laugh the laugh they used to laugh. And to see them HAPPY the way they were HAPPY.  Not for me, but for them. 

Dear Lord,
You know my kids so much better than I do. You know their sicknesses and the burden they carry. You also know their hearts. Lord, I ask you to be with my kids now as you work in their life.
Lord, let your will be done in my kids life. If there is a sin that needs to be confessed and forgiven, please help them to see their need and confess.
Lord, I pray for my kids just as your Word tells me to pray, for healing. I believe you hear this earnest prayer from my heart and that it is powerful because of your promise. I have faith in you, Lord, to heal my kids, but I also trust in the plan you have for their lives.
Lord, I don't always understand your ways. I don't know why my children have to suffer, but I trust you. I ask that you look with mercy and grace toward my kids. Nourish their spirits and souls in this time of suffering and comfort them with your presence.
Let my kids know you are there with them through this difficulty. Give them strength. And may you, through this difficulty, be glorified in their life and also in mine.


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