All Grown Up

Thursday 8/28/08 at 8:00am Zoe boarded the bus for her very first day of Kindergarten. Mommy cried like a fool - once Daddy was out of site ;-) Zach wanted to ride the bus too, but so far has adjusted to Zoe not being home.

I Knew...

I knew this was coming and I just wasn't as prepared as I thought.
I knew the expression part of the test was going to happen.
I knew Zach wouldn't do well....
After all, how well can a child who is hardly verbal do on a test to find out where he is at expressively?

Ms. Kristin told me to prepare myself for the scores of the test - I didn't have high expectations, because I know my son is not verbal. I guess I didn't prepare myself enough, or maybe I did - maybe it just hurts because it is brought back to my attention just how bad the situation is.

I don't have an age range to type out for this. I simply don't know. What I do know is Ms. Kristin started the test and didn't get very far. She was frustrated, she even said so. She is going to go over how to score the test with another SLP because this test wasn't designed for a child with Apraxia.

See, the problem with Zach is he knows what he wants, he understands so much more then he is given credit for, yet he has no way of verbalizing. Zach is able to now point to things when he needs them, he is also able to sign with prompts (very few signs on his own), he can most of the time use his PECS so he can express himself - It is just that he can't do it verbally.

I know all of this! This is the life we live, everyday, trying to figure out what Zach needs, what Zach wants without any verbal cues.

I need to take a step back and remind myself ------ 5 months ago Zach went in there and I described him as the child you wouldn't even know is in the room. Now you know Zach is in the room - he makes sound and let's us know when he is happy, or unhappy - he makes his presence known.

I knew this wasn't going to come back with good news like yesterday -- I knew this, but I wasn't as prepared for the hurt as I thought I was!

Amazing! Simply Amazing!

I'm going to talk therapy for a bit as right now I am AMAZED at some progress Zachary has made!!!!

Zach has been in OT and ST for just about 5 months - next month (month 6) is when he is due for his re-evaluation. Ms. Kristin will not be here (she is having a baby) so she has decided to start the evaluation early.

Today was the start of the testing. First step comprehension........

Ms. Kristin didn't think he would go so far so she had to stop in the middle and print out more sheets for herself. The test isn't done, we didn't have time to finish it - as Zach went further then expected (the more the child does the longer the test)

My sweet child, the one who walked into therapy 5 months ago having a comprehension level less then his age at the time - Zach was 18 months old and had a comprehension level of less then a 12 month old child.

I am happy to say that as of today - 5 months after the start of therapy Zachary is comprehending that of a 3 1/2 year old --- now I have to remember the test isn't done so that may go up or stay the same. Zach is 3 weeks away from turning 2 and is comprehending at a level a year and a half above where he should be at.

I also need to remember, I should never think of what he can't do and focus on what he can as it is truly amazing!

Life Stuggles, Famous People Have Dyspraxia Too

A friend of mine shared this with me today, to help me feel better about one of our struggles with Zach and I wanted to pass it along........

There was an article about Daniel Radcliffe, the guy that plays Harry Potter, that reminded me of you and Zach... http://movies.msn.com/movies/hotgossip/8-18-08_5/?GT1=28101

With his duds-doffing Broadway debut in "Equus" looming, Daniel Radcliffe is getting a few things out on the table, including his health issues. In an interview with Vogue, the "Harry Potter" star, 19, reveals how he suffers from a mild case of dyspraxia, a coordination disorder that affects motor skills (it's often mistaken for clumsiness) and can make simple tasks such as tying his shoes a challenge. "I sometimes think, 'Why, oh why, has Velcro not taken off?'" he quips to the magazine. Radcliffe says his acting career began at age 9 when his mother realized his confidence needed a kick-start and let him audition for a TV version of "David Copperfield." "I was having a hard time at school in terms of being crap at everything, with no discernible talent," admits the actor, who begins flashing his bits on the Great White Way on Sept. 5. A rep for Radcliffe confirms his dyspraxia diagnosis, telling the London Daily Mail, "This is something he has never hidden. Thankfully, his condition is very mild and at worst manifests itself in an inability to tie his shoelaces and bad handwriting."

Dyspraxia is another name for Apraxia - it is how they refer to the same disorder Zachary has in the UK and other countries. In the states you can hear Dyspraxia but it is more commonly called Apraxia. I am so glad to see a famous person come out about their struggles and how hard things can be for him it really gave me hope that Zach will be able to do things on his own. I hope it reaches others who struggle every day with the same disorder and gives them hope as well!

I can see the persistence in Zach's eyes when he can't do something and this like my friend Melissa said "It just made me think of Zach and how he could still have a hidden talent no one knows about yet!" You are so very right Melissa and thank you for sharing this with me, giving me a little sunshine and hope today!

No News = Good News

At least that is what I've been told....Let me start at the beginning of our day yesterday

We took Zach to see the endocrinologist first. The Dr hadn't even seen the test result which is what brought us to him in the first place. Evidently our pediatrician had forgot to send them - I think that was a crock - I think the endo's office misplaced them, or he was too lazy to look.

He told us because Zach is having "some" growth so he isn't sure Zach really has a hormone deficiency - yet, remember I said --- he hadn't even seen the test.

The Dr made me feel like we had been every where else looking for answers - sure why not come to me, yet I'll give you none - he pretty much said this.

Zach's original IGF was low, yet the endocrinologist didn't see this and I was livid with myself because I didn't bring my big book of medical information I've been keeping because of the storm (I plum forgot). The endocrinologist is running the test over since it had been a while and is also running another more comprehensive study to go with it. The Dr told us he would call if something was off and have Zach seen sooner. If all is normal he will see Zachary in 6 months, just to check on how he is growing, if all is fine at that point there will be no need to see him again. Okay fine I can live with that - no news = good news.

Next Zach saw the geneticist....

I know this is great news - all the tests came back normal, no genetic disorders found!

Yes, this is wonderful news but as the Dr put it, it is also very frustrating news.

It is good news, meaning, there is "hope" Zach will overcome a lot if not all of his slow developmental problems, growth, and all.

It is frustrating news because Zach has so many little issues or signs that would point anyone in the direction of a genetic disorder - yet nothing came up.

An example - the Dr took a couple of minutes and just looked at Zachary's palms - it was a big enough deal she had another Dr who was doing rotations with her look too. Zach has something called a Palmer crease - she said this is a sign that can lead Drs to a genetic disorder BUT it can occur in 3% of the population who don't have a genetic disorder (in one hand) in both hands 1% - she is thinking Zach may just be that 1%, because the first sets of tests came back clear, but can't say for sure.

For right now she didn't want Zach to undergo any more testing. She wants to see him in 6 months, sooner if anything gets worse.

She does want him in PT ASAP - Zach is starting to walk with his feet turned in and the Dr thinks that PT will help. Zach has such poor muscle tone the PT will help with that.

She was also very happy we were getting in to see the developmental pediatrician. She reminded me how hard is is to get into and Zach got in VERY fast in comparison to other children (3mts it took - compared to 12mts) She wants the DP to call her and discuss Zachary. It is nice to know she wants to work closely on this.

After the Drs appointments was Zachary's OT and ST sessions. They went okay. Ms. Jerry did hear back from Early Steps and was told yet another form needed to be filled out before they would give the okay for a PT Evaluation to be done. Our therapy place doesn't think they will deny Zach PT, as he needs it so badly and if need be we have the backing of many Drs. So Zach is all set up for his evaluation on Tuesday.

No News = Good News at least for the time being.

We Will Get By

Today was a day I remembered how hard things can be.

It all started out fine until we were at therapy. I remembered just how hard it was to get Zachary into OT and ST and now we are faced with the fight to get him into PT which he needs so badly. At first we were told the OT needed to send a letter, she did that a week later Early Steps responds back with a letter stying that the OT needs to call while the parent is there. Ms Jerry called 4 times while I was there only to reach a voice mail and leave a message each time. She will try again tomorrow - if we are able to make it to therapy, the storm is making it look like a lot will be canceled tomorrow. Other then that OT went rather well, a very pleasant surprise.

ST on the other hand was the BIG reminder for me! Zachary used an AAC devise today. Ms Kristin wanted him to use it because his speech just isn't where she is happy yet and she wanted to see how well he does with the AAC....

Zach didn't find it as interesting as many of the kids do. He wasn't interested in touching it too much. Using the AAC also brought to light what I have been saying this whole time - there are more things Zach can't do that simply don't make sense to me... He is going to be 2 in a month and has the hardest time identifying objects, or pictures. It is hard for Zach when we use his PECS and just as bad with the AAC. I told her again it is the same when we read in a book or anytime I want him to point to anything. Give Zach a Dog, a Cat, and a Fish -- I swear he know what they all are but ask him to grab the Dog out of the group and he'll hand you a Fish.

You know, I sit at home, I worry so much, I cry so much, I try so hard to be a strong Mommy - Today was a day that reminded me why I worry, what makes me sad. I know at home he can't do this, but when I see it happen in therapy it just reminds me of his struggles that we are trying so very hard to help him overcome. It hurts so bad to see the struggle when all you want to see is a 2 year old that can do what all of his peers are doing.

Today I was reminded of Zach's struggles, but I was also reminded that my little man can do it and will do it - he will get by even if it is at a different pace then I'd like to see!

WELCOME TO HOLLAND

byEmily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go.

Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Another Week of Therapy

Another week of therapy over and done with. This was a pretty good week. No major meltdowns or issues. Nothing to really brag about either.

This week was a decent therapy week. Ms. Jerry worked him very hard in OT. We have a new masterpiece. ST went okay - so hard to say some weeks. One day is good, one day is bad, one day is iffy. Today didn't go so well as Zach was having a very hard time even opening his mouth, sounds were coming out more muffled then anything.

It is so hard for me to believe in a little more then a month my little man will be turning 2. He still in so many ways seems much more like a 1 year old then a 2 year old boy.

I Can't Believe

It has been almost a week since my last post. This is so unlike me, normally I could blog everyday. Nothing is really new, I'm still just sitting in a quiet spot for now.

Not much in line for this week besides therapy all week.

Next week is a big week with 3 appointments, the ophthalmologist, endocrinologist, and geneticist on top of therapy of course. We will be busy and hopefully have some more puzzle pieces to help complete our puzzle. I'm praying for more answers this time instead of ending up with more questions.

Not Much New

Not much new and not much to blog about.....

I've been in a rather quiet place these past couple of days. I'm not sure if it is just me, worry over Zachary, or that my baby is starting kindergarten in a couple weeks.

Anyway for news, Zach started his GP medicine on Sunday August 3rd. So far so good - we won't know if it is helping him for a couple of weeks and so far I can't see it hurting him in any way.

Today was another day of therapy. It went well.

Hopefully as the days pass I will be more apt to write.