Been Forever : an update

It has been such a whirlwind of a summer. Since it is slowly winding down and I am trying really hard to wind stuff up and get things caught up. I thought I would send the before school update.

Ty has done FABULOUS this summer. He didn't qualify for summer school ( boo!) so we decided we would do private therapy until his first surgery of the summer. Of course that never goes to plan and his surgery really messed up the entire month of July and Augusts therapy schedule.

The bonus: we took time off from speech and the toot face is now TALKING. He is doing fabulously well. He picks up 7-8 words A DAY! He is doing really well. Some are not phonetically correct but they are working and functional words.

He received his phenol injections and his tonsils out at the same time in June. Which messed up our casting schedule so we didn't get casts on. I think for summer that works but for winter I would LOVE to see him get casted again.

I am so thankful for Ty and all he is doing. Parenting got HUGELY easier. We hope it continues on the upswing.

The other stuff going on is driving me insane!! Dallas has been sick and he has been in and out of the hospital and them not finding anything. We think it is gal bladder and only have a few more tests before we can finally make them take it out.

We have also been dealing with infertility. 2 years we have tried to get pregnant and have resorted to IUI treatments only to have our meds TRIPLE the cost from our first month so we have had to take a step back. It has been the HARDEST thing for me EVER.

But that is us.

Speech Woes

Speech is such an ugly word in this house. It has been mentioned many times how badly we want to communicate with our child. It has been a source of contention many times between me and others. Its hard to explain what happens.

Tyler signs many words and usually we (meaning me and his dad) can understand what he wants. We got him to finally sign dad after he USE to say it. He now will only sign it. We have a handful of other signs/gestures that we know mean certain things. Once we explain them to others they can understand him.

When we started school we thought that being around other kids would help with his speech problem. That it would encourage him to be more vocal. While we heard more sounds and a little bit of animal sounds no words came out of his mouth.

We increased his speech and did private and are still doing private therapy. I take him once a week for an hour. Because of his need for being around mom we have transitioned him to being with just his speech teacher.

In February when we got his shunt replaced I called to talk to his teachers and therapists at school wondering why no one noticed he acted off there. For the first time in six months we found out that he was not making any sounds or making any progress with his speech teacher at school.

This was when the speech teacher mentioned he was snotty and wouldn't participate. I kinda of laughed and said " He is three. What do you expect." But I got mad. I sent a notebook every day and rarely got back any kind of feedback. I assumed he was doing fine. Communication came only when I asked questions. So this information was new to me.

I immediately sat down and went through books, puzzles, toys, anything that generated some sort of response from Tyler. I wrote out a long letter explaining noises, sounds, gestures and anything that he did when looking at certain objects.

The first day after that I got a response from his teacher. She said "Wow, we had no idea he would be this verbal." I thought for six months you got nothing and it didn't dawn on you to come and talk to me or call. I would have come in and helped you.

I was furious. But that hasn't really increased our speaking. When we got a failed hearing test everyone ( meaning teachers and therapist at school) thought this was the answer to his speech problem. Me and his dad rolled our eyes thinking that this kid can hear just fine. And sure enough we were right. Nothing was wrong with his hearing. He had his ABR done and not one bit of hearing loss at all.

This is were I started hearing from people " oh that is how my kid was/is" or " have you tried this" or my favorite " I am sure he says more than you think." Um nope. He really doesn't. In fact he makes more noises and sounds for me than he does for any one else. Not kidding. None of those things are comforting when you are dealing with a almost 4 year old. At some point communication is crucial. Speaking is needed to get your point across and to eliminate some kind of frustration.

We have been working on getting the beginning syllables out of his mouth. His private speech lady is trying so hard to get ba ba and da da out. All day long we have done something with speech. Him touching our mouths. Him feeling our throats. Me repeating and repeating ba ba ba.

After his bath tonight a most glorious sound. Ba ba

Cheers and clapping and excitement came. He did it again and again. Looking for praise. Clapping and cheering continued.

This speech thing is exhausting. It is a lonely world. Not just for me. But I can't imagine the loneliness he is feeling not being able to express himself and have us understand.

Speech

Communication

One word

What Is Up With Our System???

Okay, having gone through the special education system here in my county with four children now I am FED UP! It started with our five year old when she was 2. Interestingly enough is in kindergarten not on an IEP despite the fact that her social skills are at a two plus year level. She seeks out adult approval, has trouble making new friends, cries and hides under the table whenever I go in to volunteer and does not want to go to recess, ever! Luckily she had a mommy who is very persistent and found her help in other places when the school system failed her before...but now I have three other children with similar issues.  And I feel like I have to fight to the death to get any help or services.

We had my eight month old evaluated today by Early Intervention and he tested out at cognitive 6 months, Language 4 months, receptive skills 4 months, social emotional 6 months and he still does not qualify for services. WHAT!? Can someone please explain this to me.

They are calling him "mildly" delayed and really did not have many suggestions for me on helping him respond to his own name and his reflection in a mirror. He currently makes no consonant sounds or babbling words and he looks physically like a five month old. The only suggestion they had was that maybe he was sleep deprived and we should give him melatonin like we do the rest of our children. Nice Nice ladies but help!!!! Does anyone have any ideas?

I hope my daughter's pre-school eval this next month goes a little better seeing as how all she wants to do ALL DAY LONG is jump off of our couch or her top bunk...over and over and over. And half the time I find her without any clothes on.  Does anyone else's children not understand why they have to wipe?  or why it is important to wear shoes or a coat in snow?

Why is my heart still breaking every time my four year old son screeches like a dinosaur, covers his ears at music, hits his head with his hands, rubs his head across the carpet with both of his sisters. I thought I would grow in accepting things as they are. Will he go to school next year without any extra help? 

I am asking myself again today after meeting with "experts", how many other children are falling through the cracks because of budget crunches in the system?  How many others are missing help early on and getting worse because they aren't bad enough off? And why in the heck did they repeal the law that allowed tax credits for disabled children?  How much more do they want us to pay out of pocket? ARRRRHHHG.