Never back a mother into a corner

I usually keep my mouth shut during political conversations among friends and family. Everyone is entitled to their own opinion, even if they do not have all the facts. I will more often than not keep my mouth shut, unless it is directed at me or my children. I am a passionate advocate for Sensory Processing Disorder and Tourette Syndrome as they have invaded and settled into my life through my children. These are the two things I am most vocal about when not even prompted.

The last two weeks have ignited a fire in me that I have not known before. It's taken years to get diagnosis for DW and we are just starting to get some help for JD's issues. I finally felt like there was hope for my boys, we were getting somewhere.

I know that there are differing opinions on medicaid and why you or your children should be on it but, when you've a child with special needs who requires loads of different doctors, different meds that can run thousands of dollars a month as well as physical, occupational and/or speech therapy that can also run thousands of dollars, you really end up with little or no choice.


For the first time in ages, I finally felt like my boys were getting the help they needed. JD was starting to talk more, make more noises, attempt words. The SLPs think he might have Childhood Apraxia of Speech. Which takes several weeks, sometimes months of visits to figure out.

DW was getting OT 3x a week and was actually able to tolerate being in the room with certain foods. He was learning how to regulate himself and I was learning things to do to help him at home.

Things were looking up, or so I thought.

The state changed health insurance companies. Suddenly, my two year old who cannot even say momma nor mommy is denied speech therapy on the basis that because he does not have a brain injury or a specific disease responsible for the speech delay! So, what does this mean for his future? In order for him to be functional in life or his future, I have to dish out thousands of dollars I do not have to help him or I'm a failure as a parent?! I'm angry, very angry.

Then they cut DW's therapy in half too! He is full on in the middle of getting his aids and orthotics to fix his feet, ankles and knees and now I'm fully angry! What does this mean for him?? I spent two weeks on the phone with the insurance company and then corroborating with the therapy center. We got 8 OT visits instead of the recommended 12 a month, so it's a small victory but, JD is still shut out.

I'm not the only mother they've done this too either! Hundreds of kids are now without speech therapy and it is not ok and it is not good. So, several of us have banded together to get help, we've called, written to the state insurance program and contacted the local television stations. Given them interviews and are prepared to go all the way up the state chain of command and then to the capital if need be.

You can yank me around all you want but, this is our children we're talking about here! Never back a mother into a corner who is protecting her baby, they never back down!

New medicine - again and a good day.

So, we tried another medicine to help lessen DW's tics. It was along the same lines as the last but suppose to be less as strong as the first or something like that. Within 48 hrs the same thing began to happen. He began to wet himself and by the next day, he again had diarrhea and this time, there was more than a speck of blood in his stool. So, we stopped it yet again. Not sure why though but, even though he's not taken any of the for more than a few days at a time and hasn't taken any in almost a four days now, they seem to have affected his tics. So far in a positive manner!

The blinking that he's had for years, the kind that contorted his face constantly, all day....it's very rare to see it now! Even on a down swing, this is the one tic that never went away, it was almost painful to watch even, his whole face would contort. In the last two days alone I can count the number of times I've seen it on two hands and feet, which is amazing. The HARD, sniffing and hiss breathing is so mild, that I don't even notice it unless I'm looking for it. He has gone from several dozen tics a day to just a handful!

The one that is probably the most annoying to everyone else though is the repeating thing. For example, today he said: "hey mom, I think we need that. Yeah I think we need that." or "I want nuggets for lunch, yeah nuggets for lunch". Seems to bother his cousins and stepbrothers more than me for some reason. Maybe it's hearing near silent grunting, no terrible sniffing that sounds like his head might pop off, no loud hissing after the sniffing, and loud triple grunting following all of that in less than thirty seconds. His tics are softer now, not OCD like - needing to be in groups of three or fours, they are random and mostly not back to back even. I don't really know if it happened from the meds or if it will last even. It could be just a big coincidence but, I will take the reprieve. Even DW seems a bit happier as his tics are not running rampant and wearing him down.

He's even taken to realizing that he cannot hear properly. So, instead of repeatedly asking us "what" a hundred times. He now walks up to us and asks us to repeat what we've just said. Which is nice for him and myself. His cousins had a time adjusting to his hearing today as they've not paid him much attention before but he told them he's getting hearing aids and they asked me why. We talked a little about what DW can and cannot hear. Which also led to a discussion about why Dathen repeats and what a tic is. So, it was a good afternoon for everyone.

So, for now, it's back to the drawing board for the tics but, I can wait. For right now, he seems ok and that is all I ever wanted for him. We'll also keep a positive attitude and hope that this lasts. :)