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.
Wednesday, May 17, 2017
Monday, May 1, 2017
Post diagnosis 6 months
Wow, had someone told me six months ago that with strict regimented at home therapy, lots of sleep, lots of worry, add in stress, and a whole lot of unconditional love that our son would make some significant improvements I most likely would have laughed at you. But I was bound and determined to try anything and everything we could.
So for those new to reading this blog not only does Dacotah have Klinefelter's Syndrome which is a genetic disorder that causes significant developmental delays, but he also has autism. To what extent he is on the spectrum at this point I can't tell you. Because he is exceeding any expectation at 18 months that we thought he would have. Yes he is still behind, but he is improving.
So the compression shirts from SPIO are around $140 bucks EACH.... They are expensive, but they have made a HUGE improvement with his overall tolerance with being around new people, going out in crowds, and with focusing on his therapies. Would I buy them again, Yes, yes, and double triple yes. They are that wonderful. (NO I am not getting paid for my review). But I can tell you some things work for different kids. Dacotah hates the brushing technique, but can handle the compression shirt. He hates a weighted vest, but he loves his weighted blanket at naptime/bedtime.
Sleep... Sleep is an issue associated with the autistic part of his diagnosis. Dacotah does not sleep well or often unless he has both medicines. One helps him fall asleep the other keeps him asleep. It has been significant in helping Dacotah with tolerating change and dealing with a mommy who stresses his need for talking. Yep I catch myself even with big sister of saying "say this" lol. He still gets whatever it is that he wants but he has to least attempt to say whatever IT is.
He still has a long way to go with OT and PT. His SMOs still fit him well and his shirts should last another 6months to a year. He will have OT and PT twice each during the summer. We opted to take a break from speech for the summer because his therapist is out of town and I don't want to introduce him to a substitute for 1-2 visits if we don't have to. We have his summer IEP meeting next Monday. Thankfully with asking MANY MANY MANY questions I think I have a small understanding of the IEP team/goals/what we need to do etc. We'll see how he does now-October for his yearly meeting and then see where we are with the current PT/OT schedule.
Speech is coming along slow but steady and we are able to understand more and more words. Since bringing the dog and cat into the house he has talked more. However, it still has to be something that interests him. With KS it's typical for them to not talk until age 3 and have a language burst at some point between ages 3-4. It's really hard at times when he tries to tell us something and we simply cannot understand him, which turns into him screaming inconsolably.
Car rides....are still a nightmare.... Running ahead and darting away from us... still a nightmare....breaking down and screaming in a store/restaurant....still a nightmare. I am going to put more effort into finding an Autism Support Dog program for him. We have noticed with the dog is around he is much calmer and he talks more. The trickiest part for me is trying to figure out how that would work or even if it would work with school. There are a lot unknowns and for my "control" freak mind it causes a lot of stress and anxiety.
He enjoys going to the park, playing on the slide, climbing everything at the park including the playground labels for 9-12 year olds. He loves being outside and loves trying to find a way out of the house to get outside anytime our back is turned. One good thing about a dog it would be able to track if and when Dacotah manages to get out of the house on us again. As a parent it is always scary and it's always in the back of my mind.
We went to the amusement park yesterday. Thankfully we had a mom working in the handicap accessibilty center who also has a special needs child. Let me just say she was absolutely wonderful with Dacotah. Dacotah never got upset, didn't cry, and was calm. It's like he knew. We did notice over the weekend, he is starting to flap his left hand when we are out in a crowded environment. It has happened on more than several occasions so it's not an accidental thing. I don't want to prevent him from stimming if he needs to, but it's hard not to say hold my hand to see if that helps. So far it hasn't cause any issues, so we will just keep a watch on it. Lining things up is still a constant whether it is food, toys, or some random rocks. He slings everything he can off the couch, tables, etc so he can use it to line stuff up on. IF you ever visit my house unexpectedly watch out for the land mines. But you know he is happy and that's what matters. His sister and him are loved unconditionally and if our house is a mess so be it.
He still isn't able to go to work with me. In fact I had to change our lab schedule at the office again because he was trying to grab the lab stuff when I was in the room with a patient. Sadly patients don't understand why I can only draw one day a week at the time I do, but it's safer for everyone involved. I work while he is at school and can finish everything else at home. It has worked great so far. I never want to have to choose between my kids and my work, and I hope I never have to because without a question it'd be my kids. But I have a terrific and understanding boss, I don't work for a corporation who only cares about the company and could care less about what happens in the employees personal time. That has made a world of difference on this journey.
Well summer vacation is a few short weeks away. I probably won't get around to posting again before our trip to see the ocean with our extended family. I am super excited.... Until next time we will continue taking one step at a time and forward we will continue marching on.
So for those new to reading this blog not only does Dacotah have Klinefelter's Syndrome which is a genetic disorder that causes significant developmental delays, but he also has autism. To what extent he is on the spectrum at this point I can't tell you. Because he is exceeding any expectation at 18 months that we thought he would have. Yes he is still behind, but he is improving.
So the compression shirts from SPIO are around $140 bucks EACH.... They are expensive, but they have made a HUGE improvement with his overall tolerance with being around new people, going out in crowds, and with focusing on his therapies. Would I buy them again, Yes, yes, and double triple yes. They are that wonderful. (NO I am not getting paid for my review). But I can tell you some things work for different kids. Dacotah hates the brushing technique, but can handle the compression shirt. He hates a weighted vest, but he loves his weighted blanket at naptime/bedtime.
Sleep... Sleep is an issue associated with the autistic part of his diagnosis. Dacotah does not sleep well or often unless he has both medicines. One helps him fall asleep the other keeps him asleep. It has been significant in helping Dacotah with tolerating change and dealing with a mommy who stresses his need for talking. Yep I catch myself even with big sister of saying "say this" lol. He still gets whatever it is that he wants but he has to least attempt to say whatever IT is.
He still has a long way to go with OT and PT. His SMOs still fit him well and his shirts should last another 6months to a year. He will have OT and PT twice each during the summer. We opted to take a break from speech for the summer because his therapist is out of town and I don't want to introduce him to a substitute for 1-2 visits if we don't have to. We have his summer IEP meeting next Monday. Thankfully with asking MANY MANY MANY questions I think I have a small understanding of the IEP team/goals/what we need to do etc. We'll see how he does now-October for his yearly meeting and then see where we are with the current PT/OT schedule.
Speech is coming along slow but steady and we are able to understand more and more words. Since bringing the dog and cat into the house he has talked more. However, it still has to be something that interests him. With KS it's typical for them to not talk until age 3 and have a language burst at some point between ages 3-4. It's really hard at times when he tries to tell us something and we simply cannot understand him, which turns into him screaming inconsolably.
Car rides....are still a nightmare.... Running ahead and darting away from us... still a nightmare....breaking down and screaming in a store/restaurant....still a nightmare. I am going to put more effort into finding an Autism Support Dog program for him. We have noticed with the dog is around he is much calmer and he talks more. The trickiest part for me is trying to figure out how that would work or even if it would work with school. There are a lot unknowns and for my "control" freak mind it causes a lot of stress and anxiety.
He enjoys going to the park, playing on the slide, climbing everything at the park including the playground labels for 9-12 year olds. He loves being outside and loves trying to find a way out of the house to get outside anytime our back is turned. One good thing about a dog it would be able to track if and when Dacotah manages to get out of the house on us again. As a parent it is always scary and it's always in the back of my mind.
We went to the amusement park yesterday. Thankfully we had a mom working in the handicap accessibilty center who also has a special needs child. Let me just say she was absolutely wonderful with Dacotah. Dacotah never got upset, didn't cry, and was calm. It's like he knew. We did notice over the weekend, he is starting to flap his left hand when we are out in a crowded environment. It has happened on more than several occasions so it's not an accidental thing. I don't want to prevent him from stimming if he needs to, but it's hard not to say hold my hand to see if that helps. So far it hasn't cause any issues, so we will just keep a watch on it. Lining things up is still a constant whether it is food, toys, or some random rocks. He slings everything he can off the couch, tables, etc so he can use it to line stuff up on. IF you ever visit my house unexpectedly watch out for the land mines. But you know he is happy and that's what matters. His sister and him are loved unconditionally and if our house is a mess so be it.
He still isn't able to go to work with me. In fact I had to change our lab schedule at the office again because he was trying to grab the lab stuff when I was in the room with a patient. Sadly patients don't understand why I can only draw one day a week at the time I do, but it's safer for everyone involved. I work while he is at school and can finish everything else at home. It has worked great so far. I never want to have to choose between my kids and my work, and I hope I never have to because without a question it'd be my kids. But I have a terrific and understanding boss, I don't work for a corporation who only cares about the company and could care less about what happens in the employees personal time. That has made a world of difference on this journey.
Well summer vacation is a few short weeks away. I probably won't get around to posting again before our trip to see the ocean with our extended family. I am super excited.... Until next time we will continue taking one step at a time and forward we will continue marching on.
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