So I forgot to tag the last post… “Aryn has what?!” But the short version Aryn had the measles week before last. And let me tell you it sucked. But we managed to make it though. Not without some scary times. Mostly the perfect storm of scary. We live in Indiana. If you’re from the Mid West or watch the news. ( I don’t know if it made national news). Last Sunday our state was assaulted by Tornadoes. Some way some how, our town was spared. But there are other areas who either where hit by tornadoes, or line winds that just destroyed whole towns. My heart goes out to all of those whom are rebuilding when they should be prepping for thanks giving and the holidays.
Our personal little horror came in the form of a 103.3 fever just as the storm was getting ready to hit us. Can I get a Amen for Tylenol. Nothing like thinking you’re about to get hit by a tornado and discussing with your husband if you can make it to the Local Er if need be, incase it doesn’t go down. luckily it did and she was blissfully asleep when the tornado alarms went off. And since she’s never allowed in the basement. She didn’t really mind being whisked down into the basement.
Other then that Aryn has been doing pretty well. While her diet is still limited she’s been eating a lot better these days. 2 meals a day is becoming the norm and three some days. The last two day care days have gone off without a hitch. We did have one big melt down at bath time yesterday, brought on by just plan tiredness. We’re still waiting on the Nero doc to see here. Since we’re in a small town it might take a bit. But I feel like we’re finally getting some where getting some answers and moving forward.
Things you think you never have to deal with. Betcha never seen this before? This is measles! And yes, Aryn was vaccinated for them. I personally feel the decision to vax or not to vax is a personal one and not a decision anyone takes lightly.
So how did this happen. Late august in the only international airport we have in our state, a man from overseas entered into the airport with a active case of the measles. By September it had reached our county. Either way Aryn has it.
Lots of time on the couch for us. All we can do is keep her comfortable amd hope for no complications.
Frustrating to say the least. DMS-5 now includes Social (pragmatic) communication disorder. Finally there is a word something to point to and say… Yes this is it. A diagnosis that finally makes sense for those children whom like Aryn don’t really fit the Autism diagnosis. But the issue is that many in the community don’t want to see it for what it is. Be it fear of loosing services or having to learn a new diagnosis. Like many things nero and psychiatric related symptoms over lap, mimic each other. While a child can very well be autistic and have SPD, it can also be the only issue a child has. Don’t misunderstand. I have no issue with a autism diagnosis for Aryn if that was what she had. But we’ve been through this 3 times now. Every time came to the same conclusion, she’s not autistic. Close enough isn’t gonna cut it. When there is something that explains exactly what is going on. But there are professionals out there that are good with close enough. Well it’s like autism so eh lump it in there. But that’s not good enough Children will not get the care and support they need, because close enough leaves a lot a room for error.
For example. Let’s look at ADHD. I am 33 years old and I have ADHD. ADHD like Autism has become the catch all for a lot of disorders and issues. The biggest difference is that ADHD ( real ADHD) can only be treated two ways. Medication and therapy to learn how to manage ADHD. It’s a neurological defect, plan and simple. My brain is not wired like a nerotypical person’s is. my medication allows my brain to function the way it needs to be. And because so many things get lumped in with ADHD when those “treatments” work, they work because it’s not ADHD. Which is great. Because ADHD never goes away. We just get better at dealing with what it does to us. But because the treatment involves the use of stimulants people freak out. No one questions an autism diagnosis, 1 in 50 kids supposedly have it. Maybe if the treatment was more controversial like it is in ADHD more people would fight to find out the truth and seek to find answers, instead of just accepting close enough.
I am going on a rant here. But the point is close enough isn’t gonna cut it. And I am so glad that she’s being treated by wonderful doctors that arn’t willing to take close enough either. They will fight to get her the right diagnosis and the best treatment for her.
As I am sure most special needs mommas can relate. There are times things get very busy and it seems there isn’t enough hours in the day. But some how we manage to get it all done. Last week was one of those weeks.
When you have a child with sensory issues every day decisions become a lot harder. Due to the all the driving I now have to do, since we’ve now added two to three days of day care a week ( more on that later) has forced me to buy a new car. I loved my pathfinder, but my pocket book didn’t. Side note if you need a good suv.. go for the older model pathfinders, their awesome if you don’t need to do a lot of city driving. But back to the car. I was spending 60 dollars a week in gas. My husband and I came to the decision that I had to get rid of it and get something that got better gas mileage. It had to happen right now. We couldn’t wait. But when you have a sensory child it gets harder. Would Aryn like the new car? how long would it take for her to adjust? Is she gonna miss the sun roof that the old one had. It has to be comfortable, it has to be warm, since we live in a area where it snows, I have to be able to see her so I can speak to her. Lucky for me Aryn was very happy with the new car, And since I couldn’t put her in the middle like she’s rode since the day she was born, I thought she’d have a melt down. But the new found freedom of being able to look at the window has been the best thing ever for her. When I went to finish the paperwork the old pathfinder was still parked out front and she told me it’s Aryn’s car. So I had to explain that it wasn’t our car anymore. Our new car was our car. I think she’s finnally accepted that the new car is ours. And I wont lie. Having a nice sedan has been awesome. I forgot how nice they were and comfy. I am very very happy and it seems the rest of the family is too. =)
Back to Aryn and day care. Aryn started daycare back in September. Partly because I needed to be able to go to doctors appointments and not drag her along and partly because there are no kids her age in the neighborhood. She needed the interaction she’ll be starting preschool next year and needed to get use to how that all works. We were very lucky to find an in home daycare that is certified. But it was on the other side of town. But when it comes to your kids you do what is best for them. Miss Amy is amazing and has deal with many kids with special needs. She adores Aryn and Aryn loves being there. Well after I can convince her to go in the morning.
The thing with Aryn unlike most sensory kids ( that’s what I am calling it now) is she appears very normal a lot of the time. I hope I don’t offend but it’s important understand the next part of this. Since her speech issues are mostly hearing related and she never really regressed it just took her a bit to catch up, it doesn’t fit the mold. It comes as quiet a shock when she does those sensory behaviors. Those things that make people stare at you and wonder what is wrong with your kid. Those things that just break your heart because you know she can’t control it. The food issue is a big one. When Aryn started daycare she refused to eat anything at daycare. Nothing I brought nada. She’d happly drink her milk. It took a good month to just get her to eat cereal. But when you’re not use to seeing that, the food strikes because things changed it’s really concerning. Hell I hate it too, but I know it’s part of what’s going on and I can’t force the issue. I can only make sure she gets enough of what she needs during the day and move on. Or when she has a total melt down, it’s important we watch her so she doesn’t hurt herself. she’s not violent but she gets so upset she doesn’t pay attention and runs into things or throws herself down. And those melt downs require some one to hold her till she’s calm no matter how much she resist it.
But happily she’s adjusting well to daycare. It’s help her speech so much more then her speaking with us adults. In the past few weeks she’s become easier to understand. she seems much calmer the days she’s home. And she even told me the other day about how the kids had Chicken nuggets. She didn’t eat them but she told me about it. So there is hope eventually she’ll start eating with the rest of the kids at daycare. Amy and I believe it’s just to much sensory stimulus going on during lunch that she just can’t deal with it. So she eats her lunch I bring her while the other kids are napping and then sleeps on the couch while the other kid sleep in the day care area. It’s not perfect but it works. Some days we have a wonderful transition to the car some times not so much. But when we can’t leave daycare without a fuss it’s a big celebration. I hate having to leave her there till 5. Since most days I don’t really need that much time. But with sensory kids schedules are very important. I am so happy with the progress she’s made. We still have good days and bad days. But the good days are getting a lot more Awesome. Hearing her talk more is pretty much the best thing ever.
Aryn did very well this Halloween. She was so very very excited for it. Sadly we had very bad weather and were force to go to the Mall to trick or treat. As you can imagine the mall was packed. Aryn was a little overwhelmed. But all and all she really did very well. No real break downs to speak of. This days are great days.
It’s one of the more frustrating things. Not knowing exactly what is gonna trigger her. Crowds are one of her big ones. But she seems be doing a ton better then usual. But I know with all things she can take a turn at any moment and suddenly have a big issue with crowds again.
I’ll post more later.. It’s been a busy weekend.