About a year ago Zackary was doing alot of squinting when he would have to read something. So we took him to the eye doctor who said he couldn’t find anything wrong with him. He kept doing it so we took to his regular doctor who didn’t find anything wrong so we weren’t really sure what to think.
Today we took him in for another exam and were told by the eye doctor that he has Keratonocus. His cornea in the left eye is so scarred he can see virtually nothing with that eye! Not only that, but the only treatment is a cornea transplant.
My poor baby. Autism, asthma, eczema, life threatening allergies and now this?! I can barely read the screen through all my tears. Fortunately the other eye is still good so maybe it won’t develop in that one at is has in the left eye.
PLease send prayers/good thoughts for Zack. And give your loved ones an extra hug tonight. YOu never know what tomorrow may bring.
It’s TBT so here’s Zackary at about 8 years old. It’s one of my favorite pictures of him. Just pure luck we were able to capture this because I am really not a good photographer.
Yesterday was such a tough day. I was feeling very shack happy so we decided to go to a movie, American Sniper. Two hours and twelve minutes long not including the previews. It really wasn’t Zack’s taste in movies so to bribe him I told him I’d get him an iTunes card after we were done. He’s a total gamer.
He did great in the movie with just one bathroom break (yeah!). We got the card and he immediately went upstairs to play video games. A short while later I hear a noise that sounds like breaking wood. I run upstairs to find that he had removed the trim from around the outside his bedroom door because it had a crack in it, broke into pieces and threw it away. (Very obviously it had been garbage just sitting there waiting to be demo’d.)
When he was younger we spent so much time and money trying to cure him in the hope that he could be just like all the others kids. ABA, verbal behavior, RDI, tutoring, speech therapy, OT and PT even (for a broken leg). Beanie babies and play at McDonalds every Friday, all manner of lessons to see if his interests would increase, elaborate birthday parties, social skills groups that we would run out of our house were just normal everyday life for us. Trips to Disney with social stories and written schedules that were planned out to the minute and followed oh so precisely. Ike did less planning to invade Normandy. We chased normal hard and I feel exhausted just writing about it.
I think that at the time I had very unrealistic expectations. But if there was one thing I could go back in time and change I can’t think of it. I’m glad that I don’t have to look back with regret wondering if we could have or should have done more. Time lost is a precious commodity that can never be bought back. Use your now wisely.
Yesterday, I took Zack in for his twice yearly check-up at the allergist. His asthma, allergies to pets, ragweed, mold, grass pollen, tree pollen, peanuts, tree nuts, and his eczema are all doing well. As if having autism isn’t enough, right? (Oh, btw, he also has Tourette’s). Naturally, she needs to scold me, yet again, about proper skin care which consists of lathering up with lotions and creams twice a day. I patiently reply, I lather him up, he washes it off. Sigh.
Why doesn’t she get it?
Don’t get me wrong. She’s a nice lady and obviously really bright. How can she not see how a person who is minimally verbal and struggles to follow directions might not be compliant with sticky lotions all over his body. Sometimes I just want to scream loud and long.
It seems lately that whatever class he goes to he’s always in trouble. Don’t grab things that don’t belong to you, don’t leave the room without asking, don’t shred your T-shirt because it has a little rip in it. Sometimes I think there is no place for him and I’m really starting to worry about the quality of his life after I’m dead.
Fortunately, we do have alot of good days. This is a picture of Zack at Disney World with Perry. Great trip. We’ve been there about 15 times and it’s always a success.
We have been through quite alot over the past 1+ years and are back better than ever.
I (C.A.) am a 52 year old wife, lover and mother. Zack is my 22 year old son who has autism. Izze is our Toy Poodle whom we lovingly refer to as our comfort puppy.
Zack is no longer in school and is looking at many avenues for crafting a happy life. He has many interests including geography, carpentry, bicycling, travel, cooking and video games. It has been challenging to find some sort of employment for Zack and right now we are trying the following:
We recently purchased a small cottage on Lake Michigan which we are rehabbing in the hopes of renting out during the summer to provide some additional income and grow his skills and interests.
I also have an Etsy shop where I sell vintage home decor and collectibles to which I’m hoping to add a line of upcycled furniture which is also one of Zack’s interests.
We’re also planning on opening an additional Etsy where we will sell handmade cards. can you tell we’re a crafty clan.
It’s my hope that by documenting our experiences we can pave a path that others can follow that may make the journey a bit easier.
C.A., Zack and Izze