Hills and Valleys

Being an Autism {special needs} parent is full of ups and downs. For the child, for the parents, for the emotions, for the accomplishments/regressions, for everything. EVERYONE associated with it will tell you hills and valleys, hills and valleys. I know I have said it before and it is because I have heard it so many times before.

The great thing about the hills is it makes the valleys manageable. You know you can make it through a valley because one day you will have a hill again. You are still riding on the high of the hill as you hit the valley. You may also have a hill in one area and a valley in another.

Here in Wisconsin, even in the middle of March, we have feet of snow still. We had more snow fall just this past weekend. The season not matching the weather can bring on its own kind of valley. It is cold, we are still inside, we have seasonal depression/anxiety we are just so done. Yesterday, we had a valley of weather, and we have been having a SUPER DEEP of valley with Nolan’s language. I was driving home from Sunday dinner at my parents (3 blocks-feeling even more sad I couldn’t be walking this small distance) and rounded the corner to see this beautiful sunset. I literally stopped in the road and precariously put my phone out the window to take this photo. This sunset was today’s hill.

Our current valley

Nolan has been in a valley with his language for quite some time. He has regressed from sentences and a large vocabulary (though it never got to “expressive language”) to non-verbal unable to copy language. We have been through so.many.tests. to find out what why. We have tried diets, we have tried the weaning of sleep meds, we have tried introducing his speech device. We have made SOME gains though they minor and nowhere near communication. This heartbreaking to me.

It is getting more heartbreaking as time goes on. He has been having sleep troubles (likely from the removal of the sleep meds) but he is reacting with tears, hysterics, and frustration. He cannot tell us what is wrong or what he needs to calm. It sucks, it sucks so bad. We just had him up for 4 hours in the night and it took 2 to find out he was covered from head to toe in hives–and that was only because I kept scratching and I turned on the lights at 4am. Do we keep him off the sleep meds and hope we are on the verge of a breakthrough (and the hysterics are just because he is aware (Nemechek “awakening”) of the fact he has wants and needs and cannot communicate them) or are they he just wants to sleep. In that case do we put him back on the sleep meds to get that nice restive sleep, but risk taking steps back in any awareness he’s gained. But how long can we do this? With a brand new baby here in 6.5 weeks or less, how long can I spend in his room?

He is going to school. They are literacy based. My sweet boy will not be able to participate in the think pair shares. My sweet boy cannot tell you who the character is in a story or what he thinks will happen next. He cannot tell you the letter you are pointing to or count how many supplies he needs. His early childhood journey is coming to an end and the elementary school expectations, assessments, and comparisons are coming. My chid will not read aloud to me. I was a 4k teacher. I taught this curriculum. I know exactly what the average student leaves 4k doing. My kid isn’t there.

This valley feels deep. We keep thinking we have a ledge to step up on and find our way to a hill only to slide back down or make no progress at all. It feels deep, it feels sad, it feels hard. And that is on us adults–I am sure he is feeling all this as well. I just want to help my baby. I want my baby to get the help he seeks. I want this life to be easier on my baby. I never felt mad at God before. I felt that this was touch and a trial but he would love me through it and we would get through it. The more we trudge up, it’s getting harder to not be mad. Now I am not losing faith, but I am growing in my anger. I am trying so hard to accept and just wait to see what is ahead. Have the faith and see what the plan is. It just gets so dang hard to do it every single day.

We have our hills in his other areas. He is gaining more and more independence daily. He is gaining self help skills and awareness of toys, peers, utensils, expectations, etc. He is growing and he is becoming this adorable little man. I try to focus on these things, but that damn valley of language nags at me daily. I cry about it almost daily.

As much as I am over this winter, I am over this sad feeling. I hope one day I will be driving along and we will have a hill pop up in his language as I came across this sunset. I hope. I pray. One day.

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