Sometimes you need a secretary

I love my boys' OT/PT/SLP place. For the uninitiated OT: Occupational therapy, PT: Physical therapy and SLP: speech language pathology. I love these women and think that they deserve so much more credit, rewards and acknowledgment than they get.

Today, after DW's OT and JD's OT/SLP session, the OTs came out to talk to me. Telling me that I need to start up brushing again, something that in the chaos of my life after JD was born, I'd kind of just phased out. This time I need to do it for both boys. Ideally she would like every couple of hours, which is where we were before but, as there are two of them, we homeschool and it's crazy, so she requested that it get done at least before every meal.

Ok, alright, I'm doing the schedule for the start of our upcoming school year anyway, I can work this in. Just need to remember that JD can only tolerate it over his clothes except on his feet. DW can do it bare armed, legged and back but, once you remove his braces, he has to have his socks on.....ok, mental note made.

She then said, as if it is nothing in addition to all that we've talked about (and it's not all noted here), back to joint compression for both boys, how many times a day I managed to forget to ask, though I know it is probably a few times a day as it was before. Another mental note made.

DW's OT comes out and hands me a paper. Both OTs have noticed that he was chewing on his fingers finally. Even though I have mentioned that he will chew them until they bleed. I explained that I had bought a bunch of chewies from a therapy shop online but, suddenly he's stopped using them. She tells me that this is a list of items that may help with his oral issues.

I got home and read the list and almost died laughing. Most everything on there he will not touch, use or smell! :D Out of at least 30 items on that list, it came down to pickles, lemon drops and gummy worms & bears. These are the only ones I can easily see him chewing on. Even the lemon drops are pushing it, I know he will surely suck on them but, biting into a hard thing, so far out of his comfort zone. :S

My only hope is that I've spent the better part of 2 weeks now convincing him to try bubble gum. He's still on the fence about it but, I know if I buy some and have it on hand now, he might decide to give it a go.

So, now I have calendar in every room of the house, one on my computer and have to buy a personal one now too. With notes for 3+ appts a week, therapies that need to be done daily, regular scheduled OT stuff that we do at home, like bed jumping, couch to crash pad, etc. homeschool schedule, other doc appts, etc. Notes on every calendar for things from therapies to be done at home to grocery lists - including the suggested items that came on the list, allergy free foods, etc. It might be overkill to some but, when you're life is as crazy as this one is, there is no lengths I won't go to, to be prepared! :D



I've decided that now I need a chauffeur and a secretary! :D

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!