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Wednesday, April 30, 2008

Learning Process

In dealing with Zach I've learned this is one huge learning process not only for Zachary but for Doug, Zoe, and myself....

We have waited months to find out what is going on with Zach - now within the past 2 weeks we finally have some diagnosis's. With learning of these issues has come the real hard times of coping with so many feelings - a learning process of sorts.

Zoe - she is a doll. A "little mother hen". What is going on with Zach is affecting her as well. Yet she is so strong and only wants to help her brother to the best of her abilities. Yesterday at therapy she was given her own set of toys to play with and when we only had 5 minutes left she was able to come a play with Zachary and Ms. Kristin. She was so good - not a peep out of her until it was her turn to help Zach. At home she does everything she can, from signing to him (and asking what some signs are if she doesn't know) to making sure he is watching her as she exaggerates the pronunciation of the words she is saying to him. She is learning when to really leave him alone and when it is okay to bother him. If Zach is around others and he is acting odd - she let's them know what is wrong with Zach by explaining, only the way a 5 year old can. She loves her little brother with all her heart. I couldn't ask for a better daughter for me or a more wonderful, caring, loving, big sister for Zachary!

As for Doug well he is taking this his own way - what that is, I really don't know yet. I know he is hurt. I know he is frustrated. I know he wants to help Zach. I know he loves Zach. I know he gets mad. He knows that people are out there with way worse situations then us, and often gets upset with me for talking or blogging about this - because "things could be worse". What I don't know is how to help Doug cope with all of this. I know he loves going to the gym and I do think that helps him as well with his stress. Hopefully I will learn how to help him threw all of this.

For me - blogging is helping. I'm also doing a ton of reading and research. Talking to my friends who understand or have been threw their own Life's Struggles has also allowed some of my stress to seem better. I also hit the gym really hard, 5-6 days a week. I've picked up running and that has also seemed to be helping.

Everyone at one time or another has Life's Struggles - for some they are simple things to overcome, for others they are harder. For us I have no idea where we will end up with our Life's Struggles but I do know we will get threw the learning process as a family!

Tuesday, April 29, 2008

ST First Week

We are back from ST....

I'd say the therapy went pretty well. There were no balls thrown at Ms. Kristin's face, and no tantrums. This is a giant step in the right direction!

I have no experience with any type of therapy besides PT when I was younger from an old shoulder problem. I guess I really didn't know what I should be expecting. Kori did tell me, but I think I shrugged it off a little ;-) It seems like he was having a lot of fun - a lot of play, a lot of ASL (American Sign Language), really nothing we don't do at home.

So, this leaves me with some questions - What is Ms Kristin going to accomplish in 2 days a week for however long this takes that I haven't with Zach in about 575 days of him being alive? What makes this so much different then daily life? What did I do wrong? - I mean I know I didn't do anything wrong - but one always wonders in the back of their head.
I guess my answers will come one day, one day, when we start to see progress.

We didn't find out if we got into the OT program because Zachary's EI coordinator hasn't gotten back with the office manager. Marla (the office manager) did say - they would be crazy not to approve him from the report that was written. I wasn't able to get copies today of either reports , but will hopefully have them in my hands on Thursday. We do now know that for right now ST will be on Tuesdays and Thursdays until Kristin can get approved for more days with Zachary.

I feel like I can breathe just a little better today. Today has been a good day in dealing with Life's Struggles!

UPDATE: Zachary's EI coordinator just called --- He was approved for OT 2 days a week for 30 minute sessions to begin with. I called and spoke with Marla - she said it would be 30 minutes to start with to see how much he can tolerate then it will go up to 60 minutes after some time. This day is only getting better ;-)

Another Day

Today is yet another day in our lives....

We have a new schedule to get used to, which is a huge feet for Zachary. We will find out for sure what days and times all of his therapy will take place - so really this will be a whole new week of getting used to new things.

Today is therapy day (ST)-- I'm not sure how much will get accomplished at ST today. Last week Zach decided he didn't like Ms. Kristin (SLP) but did decide he liked to throw little, hard, plastic balls at her face. YES he is all boy ;-) I wonder what form of torture he will use on her today?!?!

I, on the other hand, really like Kristin - she is a no holds bar therapist - if Zach isn't doing what he needs to do she takes things away from him. She doesn't let him get away with ANYTHING and to her tantrums have no place. She does let him tantrum, but he gets no satisfaction from doing so around Ms. Kristin. I hope he warms up to her today, so that we can finally get in a real ST session.

Right now things are peaceful - Zach is down for his nap and Mommy can relax.

Monday, April 28, 2008

The First Day

So here I sit...wondering why I haven't gotten all of this out before...why I haven't thought of this a long time ago. I need to do this now and today is the first day......

Life has been really good for me... I have a pretty perfect life (well by my definition of perfect;-) I would have never dreamed of having- with a wonderful, caring, loving, compassionate husband, two very beautiful, loving, kind, and respectful children. Zoe who is a very smart and beautiful little girl and one son with special needs - who is also very gorgeous and may I add, very smart as well! I am fortunate enough that I get to spend my time at home taking care of my children (my husband too) - running around, playing, swimming, going to the gym, taking Zoe to and from school, and dance, going to numerous Dr's appointments and therapy. My weeks are very busy and never the same from week to week.

Let me tell a little about my very special little boy, my beautiful son...... His name is Zachary When I say little, I mean "Little" - his size has been a constant struggle for us since he was about 3 months old. At 19 months old he is only 19 lbs (he has lost 11oz this past month). He has been threw more testing over the past 19 months then I care to remember. At one point I had to learn to come to grips with the possibility that Zach was going to be deaf - but we over came that (he had tubes put in in February and by the end of March his hearing had come back) We are unsure if episodes that we believed were seizures are seizures or behavior issues from his SPD - that is scary - the not knowing!!! To look at Zach or even spend a few days with him one would think he is a normal child, but he isn't.......

Zach was just diagnosed with speech Apraxia and SPD (Sensory Processing Disorder). These are both neurological disorders. It has been a long time waiting for some type of diagnosis for my little man. We are finally getting somewhere with something! Zach has started ST (speech therapy), right now it is only 2 days a week (the SLP wants him there 5 days a week) Last week we had his formal evaluation for OT (occupational therapy) and as soon as we can get approved he will be doing OT 2 days a week to begin with. The OT is also trying to get us in with the PT (physical therapy) because Zach is very weak and really needs to build much more strength, she feels that by having her and the PT it will benefit Zach much more then just her alone can do.

Definition of Apraxia of speech: A severe speech disorder characterized by inability to speak, or a severe struggle to speak clearly. Apraxia of speech occurs when the oral- motor muscles do not or cannot obey commands from the brain, or when the brain cannot reliably send those commands.
Definition of Sensory Integration Dysfunction/Sensory Processing Disorder - Sensory Integration Dysfunction; now called Sensory Processing Disorder is an inability to pull together and understand (or process) sensory information from the environment. This includes the ability to understand sensory information that arises from one's own body (such as from muscles and joints), as well as understanding sensory information that arises from other people (such as language) and objects in the environment

The hardest of news to hear was that he does have issues - it wasn't me being an overly paranoid Mom or Zach being my baby, and that, just maybe, I didn't want him to grow up. Zachary will be in therapy for a very long time, most likely will be transitioned from EI (early intervention) to the schools ESE program when he is 3 and they can't tell us how much it will help him or if it will even help him. I know that these two things may not be all that Zach has wrong. As for now we will stick with this and it is nice to finally begin to understand why Zachary is how he is!

Zachary does not speak (this has nothing to do with him being slower because he is a boy or just because he is a late talker or anything to do with him not hearing in the past (which by the way I HATE hearing all of these from people)) and he has his own little unique quirks. He is very slow in getting to know strangers (if, he even gets to know them) and hates to be moved by anyone if he is in his own little spot, he doesn't like to be touched - but yet loves mommy or daddy to cuddle with him on his terms of course. He also hates the car, or swinging on a swing, being dirty, having anything on his feet, or anything that isn't his normal routine. Zach does not like to look people in the eyes. His way of communication is ASL, grunting, or having a huge tantrum.

I'm going to be positive -- it is like a friend of mine (Molly) told me "you just had a baby and the Dr walks in - he asks "so is the baby walking yet?" you look at him as if he were crazy and say "of course not he was just born" I need to remember this and remind myself daily - No Zachary isn't talking yet -- but will he, YES!!! I need to be strong for him, I need to be his advocate and get him all the help he needs. One day my little boy will prove lots of people wrong --- one day I will look back at this blog and laugh that I was ever so concerned with Life's Struggles.

Thanks Molly, Kori, Tanya, and my TNTers for all the strength you've lent me, all your wisdom, and most of all your true friendships ;-)

If you are interested on info about Apraxia or SPD here are a couple links to help understand what we are dealing with.....

This is also a good video on Apraxia from youtube......

I know I'm going to have my ups and downs - I will have my good days, I will have my bad days (right along with Zach) Hopefully this blog will allow me to get out some of my stress.