I know I have said this before, I always had big dreams for my kids, I thought they would be 100% healthy and have no issues. Obviously reality hit when we found out Dacotah had an extra chromosome attached to his DNA that causes a lot of issues in itself, but the biggest blow really came when the word Autism was spoken. Did I suspect it, yes. Did I want to know, yes and no. I had the following conversation with an OT the other day.
You know the hardest part is accepting a label that is placed on your child.
OT: I can understand that, but the label doesn't have to be there.
I really think when Looking at all aspects of labeling our kids with ADHD, Autism, Sensory disorders etc. is not a bad thing, because it gives us a place to start, it gives us hope, and most importantly it finds the services they need to have the best life they can have. It's true, without the autism diagnosis a lot of his behaviors would be attributed to terrible 3s, which isn't the case. I'm sure there are some parts of his behavior is 3 year old behavior, not arguing that but it gives an explanation of why he does some of the things he does.
OT: That does make sense.
So while I HATE HATE HATE having the diagnosis, I have found a great support system locally, other parents live in our town who also have kids on the spectrum, and while each child is uniquely different, it helps as parents to have someone who says I understand what you are saying.
A GPS tracker was suggested for Dacotah. I honestly hate the idea, but at the same time, he will soon start school and be away from me. With a real time tracking device I can see that he is still safe in a secure area... Then the realization SMACKED me in the Face yesterday.
Dacotah is making progress. We didn't know if he would talk, but he does. But there is one HUGE PROBLEM. Dacotah cannot tell an adult his name, address, phone number, parents name. He cannot tell us that he is sick. He has started telling us ow if he falls down. But like yesterday he fell on the ground hard enough to scrape his knee, he whined all of 15 seconds, he was bleeding and never mentioned that he had a boo boo or that something "yucky" was on him. As a mom this saddens me. I want him to say Mommy I am hurt, can I have a band-aid, can you kiss it and make it better. He is over 3 years old, this is NORMAL things he should be able to say and can't. It's HARD...
A mommy friend suggested "tiles" you can check them out here https://www.thetileapp.com/en-us/products I can attach one of these to his zipper on his compression shirt so he wouldn't know it is there but I can track him in the event he gets out of the house. I hate to admit it but it's happened before TWICE (due to an unlocked door). It's a matter of time with an older sibling before something like that happens again. I want to be prepared instead of having my stomach drop at the realization I have no clue where to look. It has real time tracking which I LOVE.
Another product suggested by another mom who lives the autism scare on a daily basis is the IF I NEED help tags found here https://ifineedhelp.org I LOVE this because I can put his information into a QR code that EMT, police, or anyone, can look to see his name and contact information. These can be zip tied to his shoes, on a loop, etc.
The other option is a GPS Tracking ankle device that the local law enforcement can attach to his ankle. This is probably the WORST option in my opinion. Life saving sure, but with his braces I am not sure how comfortable it would be because it would go further up his leg. So if the Tiles and Tags can do what I need them to do, this would be the absolute last resort.
I will have a meeting with the fire chief again soon. While I was thinking about how I could teach the local law enforcement/emergency workers the following SCARE came to mind. What is one thing that everyone offers a child in the event of a traumatic event. Usually a stuffed bear and candy. WHAT IF that child is allergic to Milk and Eggs and cannot tell the EMT....
These are our EVERYDAY real life fears. It's scary. I mean before I was worried about the looks we get when we park in a handicap access lot and the negative things we have heard about how no one in our car is disabled. FIRST they have obviously never had their heart race as their child broke away at a full scream run into a parking lot with moving cars. Yes, we get to park close to the entrance, and sometimes even that is too far. Yes we get a pass for amusement park because crowds and close confining spaces freak him out. But I WILL NEVER hide my child or prevent him from enjoying life the best way he knows how.
I am his advocate, I am his mother, and I will do whatever I can to protect him. Step by step will march on. Until next time.
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