One Year Later
Five years ago this week, I found out that I was expecting - my first pregnancy. Mike and I had been married five years, and we didn't think having kids was God's plan for us - and then there was Grayson! Sweet, funny, beautiful, loving Grayson.
One year ago this week, we learned that our sweet first kiddo has autism and sensory processing disorder, along with a language delay and global developmental delays.
We are a year out now. It's been a hard hard year.
I have mourned so much this year.
When we were driving home from Grayson's diagnosis appointment, Mike and I sat in silence. Grayson was completely worn out from the testing he had to go through and was fast asleep in his carseat.
The diagnosis wasn't a surprise by any means, but we were still shocked. I know that sounds crazy, but until you have been through it...the finality of it, it was officially official...well I was angry. I went into mom-mode then and began telling Mike about how one day we need to build a home that will accommodate Grayson for when he is an adult, because he will be able to live on his own, etc., etc.
But we have been able to hold true to the fact that he is still Grayson - our sweet, funny, beautiful, loving first born!
There were still so many unknowns though.
There are still so many unknowns.
We have had to do a lot of long range planning.
Our wills were changed, we've looked into Medicaid to use as a secondary insurance, we have fought with our private insurance company, we have watched our son regress some in terms of sleep and behavior, we have looked at preschools and kindergarten programs, we have endured a lot of ignorant questions and comments, we have prayed tirelessly over our kiddo. He is now involved in the special needs ministry at church, he is a joy to everyone he meets.
We have looked about moving to states that are more "autism-friendly" as far as programs go. He now wears a tracker on his ankle through Project Lifesaver. We stay home now a lot more. We rarely do things with friends because it's too stressful.
We have tried new schedules, calmed our home so that its less distracting for him, we have had to hide toys, we have dealt with bruises on arms, hands and faces from pinching, scratching and hitting. I have made more sensory "calm down" bottles that I now am an expert in creating them! ;) We have seen some really exciting milestones being met! We have Ms on our IEP Update! (Which means he has mastered some tasks.) He is eating more foods. We have installed a therapy swing in a doorway upstairs. We are pricing out fences so he has a safe place to run and play.
It's been hard. Really super hard - even the good times. Though we have the support of family and some friends, I feel like we have been going through this very much alone. I have a few friends whose kids are on the spectrum, and they have been great sounding boards. Mike is the only person who "gets it" when I tell him about the hard things I encounter everyday. I am not just a parent, I am a case worker and full time caretaker in many aspects.
It's been a year.
Sometimes I wonder what the future will hold for us. Will Grayson begin to talk? Will we master potty-training? Will I not get so upset when people say hurtful things about him to us? How will he do in kindergarten?
I am anxious about it all already.
But I think I am done mourning now. It's time to move on. Autism is definitely a challenge, but it is NOT the end of the world. We have good days and bad days, and many days I forget that Grayson even is autistic because it's just our normal.
One of my favorite autism bloggers at Finding Cooper's Voice, Kate Swenson says it best. I find a lot of comfort in her words! See below:
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| His first picture ;) |
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| His latest picture :) |
One year ago this week, we learned that our sweet first kiddo has autism and sensory processing disorder, along with a language delay and global developmental delays.
We are a year out now. It's been a hard hard year.
I have mourned so much this year.
When we were driving home from Grayson's diagnosis appointment, Mike and I sat in silence. Grayson was completely worn out from the testing he had to go through and was fast asleep in his carseat.
The diagnosis wasn't a surprise by any means, but we were still shocked. I know that sounds crazy, but until you have been through it...the finality of it, it was officially official...well I was angry. I went into mom-mode then and began telling Mike about how one day we need to build a home that will accommodate Grayson for when he is an adult, because he will be able to live on his own, etc., etc.
But we have been able to hold true to the fact that he is still Grayson - our sweet, funny, beautiful, loving first born!
There were still so many unknowns though.
There are still so many unknowns.
We have had to do a lot of long range planning.
Our wills were changed, we've looked into Medicaid to use as a secondary insurance, we have fought with our private insurance company, we have watched our son regress some in terms of sleep and behavior, we have looked at preschools and kindergarten programs, we have endured a lot of ignorant questions and comments, we have prayed tirelessly over our kiddo. He is now involved in the special needs ministry at church, he is a joy to everyone he meets.
We have looked about moving to states that are more "autism-friendly" as far as programs go. He now wears a tracker on his ankle through Project Lifesaver. We stay home now a lot more. We rarely do things with friends because it's too stressful.
We have tried new schedules, calmed our home so that its less distracting for him, we have had to hide toys, we have dealt with bruises on arms, hands and faces from pinching, scratching and hitting. I have made more sensory "calm down" bottles that I now am an expert in creating them! ;) We have seen some really exciting milestones being met! We have Ms on our IEP Update! (Which means he has mastered some tasks.) He is eating more foods. We have installed a therapy swing in a doorway upstairs. We are pricing out fences so he has a safe place to run and play.
It's been hard. Really super hard - even the good times. Though we have the support of family and some friends, I feel like we have been going through this very much alone. I have a few friends whose kids are on the spectrum, and they have been great sounding boards. Mike is the only person who "gets it" when I tell him about the hard things I encounter everyday. I am not just a parent, I am a case worker and full time caretaker in many aspects.
It's been a year.
Sometimes I wonder what the future will hold for us. Will Grayson begin to talk? Will we master potty-training? Will I not get so upset when people say hurtful things about him to us? How will he do in kindergarten?
I am anxious about it all already.
But I think I am done mourning now. It's time to move on. Autism is definitely a challenge, but it is NOT the end of the world. We have good days and bad days, and many days I forget that Grayson even is autistic because it's just our normal.
One of my favorite autism bloggers at Finding Cooper's Voice, Kate Swenson says it best. I find a lot of comfort in her words! See below:
When Cooper was younger I used to tell his dad that I needed to know how this was going to end up. I just needed a tiny glimpse into the future. I needed to know it was going to be ok.
Was he going to talk? Be potty trained? Live on his own? I was so unbelievably scared all the time. We were having so many lows and very few wins and I didn't know how I could keep going. And then it dawned on me. He isn't stuck. He's growing. He's learning. He's just going at his own pace. Have faith friends. This isn't forever...(w)here your child is now isn't any indicator of where they will end up. I always forget that. Have faith and keep moving forward.
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