February 25, 2008

Looking Into the Past

I am realizing now that I’ve not blogged on Mr. T’s apraxia and that time in our life, what caused it, what we did, and some of what occurred during that time. I’ve never mentioned it here and part of me is kind of surprised as I’ve been blogging for nearly four years and another part of me realizes that I view it as something that we overcame as a family and it’s in our past.

But I’m going to put it out there. It’s a lengthy story, so skip along if you’d like. There are people who read me who were there for some of this… they will remember.

I wrote that he was born with it. I wrote that to gloss over the fact he has it and so I didn’t have to explain myself. Most of you know me, that I’m steeped in logic, and that I’m not flighty and prone to thinking someone is ‘out to get us’. So I’ll put it out there.

Mr. T was a normal babbling baby until his 6 or 9 month inoculations, I forget which, and then he went silent. He still laughed, but there was no ‘buh buh buh’ no sound other than laughter. Nothing.

It was brought to my attention as we struggled with our situation, that they had added a new shot to the infant/baby shot schedule a couple years before and many of the vaccines had mercury in the preservatives. Nobody had bothered to add up exactly HOW MUCH mercury our babies were getting. Everyone will deny that this was a problem… but I find it interesting that now NONE of our inoculations for our children have mercury in them and they have changed the inoculation schedule.

I view our government as inept when it comes to the vaccinations. All of my children are vaccinated and I am one who believes in them, but every time a new inoculation comes out, I tell the pediatrician, “Give it a couple years on the general American population and then talk to me about it. Let other children die and have side effects first.”

It is what it is and there have been inoculations that I have been offered for my children, that have not been mandatory, that I have said NO to, only to find them pulled off the market when children died.

I have no faith.

By 18 months he had developed his own sign language. I still remember some of them. He’d blow on his finger for ‘hot’. For ‘Dad’, he would pump his arm up and down like he was cheering. That came from standing at the window watching his Dad cut the lawn and his older brother doing, ‘the Daddy cheer’ and cheering him as he drove by the window on the riding lawnmower.

I had no faith in the pediatricians we went to. The final straw was a misdiagnosis of one of my children when Mr. T was 15 months, so I moved the boys to a group now that I love. In particular, I LOVE and ADORE one who I will call Dr. B. I love this man and feel a great debt of gratitude to him for what he did for us… for believing in me (and has always believed in me) and for looking ahead and being proactive.

When my boys are old enough to leave him as a doctor, I am definitely going to do something for his office.

I had never seen Dr. B before, but he came highly recommended. He didn’t know me. As far as he knew, I was just some flighty Mom worried about nothing. I walked into his office tired… I had a 3 ½ year old, an18 month old, and I was pregnant with my 3rd, so you can imagine that I didn’t exactly look like Miss America.

He asked me what was wrong and I said to him straight out, ‘My son doesn’t speak and I am worried.”

I remember this conversation like it was an hour ago.

“Doesn’t speak? Not Dada, Mama, nothing?,” he replied.

Me: No. Nothing. He’s developed his own sign language.

Dr. B: Not even Dada.

Me: Nothing.

He looked Mr. T over and looked at me and said, “I want you to go to call this number and get him evaluated immediately. They’ll check his hearing and see where he is all around developmentally. I’m worried too.”

And with that we started into our long journey into the world of social services, speech therapy, and speech.

Mr. T tested out for comprehension as nearly 3 years old. I got him into testing at 19 months and he was testing as comprehending what was being said to him at nearly the same age as his older brother.

His verbal communication came in at 9 months. He had none. His ability to convey what he wanted came in slightly higher. His hearing was fine… perfect actually and it was fascinating how they tested it. If he’d not had such an enormous ability in comprehension, they’d not have been able to do it the way they did, but they tested him like an older child.

He was so small… sitting on my lap in that booth. It was hard to keep my 3 year old from wanting to help him… to keep him entertained while my younger one tested.

We got him in private therapy immediately with a wonderful woman named Donna. The Federal Government picked up the tab until he was 3… and at that point he was speaking, but you couldn’t understand him. They don’t pay for therapy for articulation. At that point we paid for it out of our pocket, as well as sending him to a local ‘summer camp’ Donna held.

One of my fondest memories during this time is watching him sit with my Mom at the kitchen table. She is so patient with my children when she teaches them. And she sat there with him going over his ‘homework’, looking at pictures, rewarding him with the little candies we had.

His improvement was marked and amazing. We had him in a public school for preschool that was designed just for speech therapy when he reached preK 3. He qualified for two days and I knew some speech therapists at a school we were not zoned for. I worked the system and got him in.

By the end of that pre-K 3 school year he was dismissed… he was 4 ½.

There were some really really dark times for us. I was still working so we could afford to ‘throw money at it to make it go away’. But that didn’t come without a price. I was always tired.

I remember having to call 911 when Ringo was 4 as he wasn’t breathing right, his lips losing their color and his chest retracting. Dr. B wasn’t in the office the next day, so I had to see some guy on call, that I never saw again. I had Ringo who was 4, Mr. T/Marcel Marceau who was 2, and a brand new baby.

I have no family in town.

The doctor we saw told me that he thought that Ringo probably had a growth in his throat (what an idiot, scaring a parent like that) and that we needed to go for X rays. As he was going through the items that I need to do, as I was struggling to keep my 2 year old entertained by feeding him goldfish, and rocking my infant, I said, “You need to write this down. All of it. Step by step. I have three children, one of them a newborn, my 2 year old is in therapy for an apraxia, I get no sleep, and if you don’t write it down, I’ll forget even coming here.”

He looked at me and said, “Who is helping you?”

What an idiot.

I looked at him coldly and said, “NO ONE is helping me. My husband has a job and works long hours. I’m flying solo on this. Write it down so I can get it done.”

I think most Moms fly solo nowadays. I don’t know many people who live near family anymore.

Ringo had asthma. There were trips to pulmonologists, trips to speech therapists, trips to pediatricians for an infant. Work, whining, crying, sickness… it was a very very bad time for me. Driving home from work praying I’d not fall asleep on the highway.

It was during that time I saw the homeless man sleeping under the overpass and instead of wondering how he got there and what happened in his life leaving him homeless, without feeling a pang of sympathy, or thinking of the fact he was sleeping on concrete, instead I thought, ‘Oh… he is sleeping. That looks comfortable. Sleep.”

And here we are today. I am walking testimony that lost sleep will not kill you… unless of course you are operating heavy machinery or driving a car. But Good Lord, did it feel like it at times… lost sleep over children awakening through the night and lost sleep over… worry.

Ringo no longer has asthma, Mr. T is able to communicate, and Bones… is Bones.

And although it doesn’t feel like yesterday… it doesn’t feel so long ago either.

Posted by Boudicca at February 25, 2008 09:40 PM | TrackBack

Damn shots.
I recorded my boy babbling on cassette tape labeled "5 1/2 months". Two weeks and a booster shot later, that tape was all I had proof of that my boy could speak.

I do thank God that the husband's mother lived with us then. She specialized in teaching handicapped children, and I do believe she is the only reason our boy is "normal" now.
Like you, we could not get help through normal channels. Doctors see so many patients, if you don't mention your concerns, they might not ask the right questions to find out if there is a problem.

I am so happy your story turned out so well.
I consider my family lucky.

Those damned shots...

Posted by: Roses at February 25, 2008 10:53 PM

damn immunizations is right.....

Posted by: awtm at February 25, 2008 11:06 PM

remember the emails from Germany?

Posted by: vw bug at February 26, 2008 06:34 AM

... every child should be so lucky as to have such a strong mother as you....

Posted by: Eric at February 26, 2008 07:57 AM

You are made of some pretty strong stuff.

Posted by: Kris, in New England at February 26, 2008 03:49 PM

One of my triplets has Asperger's. He had (and still has) some speech problems. However, I can't blame anything but genetics. It was apparent from birth that he was "different". First of all he was (and still is) beautiful - he was pretty, just gorgeous. There was something in those giant dark chocolate brown eyes that was mesmerizing and he was always just "different", "off", not in sync with the other babies. We said from the moment he was born that he just wanted to be an only child. Nothing has changed about that. However it became apparent by the time he was about four that there was something more than ADD or a speech problem that needed to be addressed.

I understand the feelings of helplessness and fear along with the "Mama Bear" feelings of protecting and fixing and solving the problem no matter what. I also understand the feelings of having three little ones trailing behind me and those that asked "who's helping you?" No one, you ninny - they are my children and their father and I manage the best we can. Why is that unusual to people? Luckily, I never had to throw work into the mix - I'd have died!

The best part is that even though my beautiful boy will never be "normal", he will probably end up better off than my other two. He is scary intelligent and already, at nine, has his sights set on MIT or Rice U (he likes Rice because it is "Ivy League", but still in his hometown close to Mom...) He is in a special social program for Asperger's kids at his school and in private therapy. When I see him succeed when I know how hard things can be for him, wow! I can only imagine how proud you were watching your "silent baby" speaking in front of a large audience. Victory! Those are the times that make all the sacrifices and sleepless nights WAY more than worthwhile.

Bless Mr. T and may you be doubly blessed, Bou!

Posted by: Momotrips at February 26, 2008 06:03 PM

When Alice came to us at 20 months, she made some "Pebbles Flintstone"-type sounds. We assumed she was speaking Korean babytalk, so we didn't worry too much; besides, she came to us with a known brain injury, so we knew she'd probably be delayed in some things.

After a year, she sounded exactly the same. Not even an attempt to mimic us. I mentioned it to the occupational therapist who was seeing her each week, and she set up an eval by a speech/language therapist. I thank God for that SLT, because she went way above and beyond to try to figure out what Alice's speech issues were. What clued her in was that I had mentioned that her physical symptoms were not unlike someone who'd had a stroke. She then realized that Alice's inability to speak wasn't a function of low intelligence so much as it was an inability to make her mouthparts work together to produce the sounds.

She took me along to a workshop on the Kaufman apraxia treatment techniques, and we put the theories to work. Within a few months, Alice could speak. Today her speech is very clear and understandable.

I rarely hear anyone mention "apraxia" so when your post caught my eye, I had to comment. And I **so** empathize with the lack of sleep thing when you've got three little kids. Oof.

Posted by: GradualDazzle at February 27, 2008 10:59 PM