Its not all bad

I know my posts lately have been a little on the negative side.  I don't purposely intend for that but sometimes blogging is a good way to vent.

Andrew ran a high fever last night so we laid low today.  This was needed.  There was no outside stimulation for Abigail today so it was a very quiet day.  We colored, we danced, we watched sandcastles being built on TV.  We talked about things 5 year olds and moms talk about.  I only had to redirect her a few times and not once had to send her to her room.  It was amazing and it was needed by this Mama.

Andrews temperature broke this morning and he also laid low, although extremely clingy but that is to be expected.  There will always be room in my arms - even if all three climb up in them.

We had an amazing moment today with Andy.  Abby came running in while I was folding laundry and exclaimed "Andy said Bus!!"  My initial response was "sure he did" but I had to find out so I went into the other room where the kids were playing cars.  I sat down with them and started to play.  "Andy can I have the bus?" to this I get the accustomed nod.  "What is it that I want, Andy?" and low and behold he said "ssss" in which I replied "good try, it is a bus."  Andy nodded excitingly and said "Baaaa - sssss".  I would consider this a little prompting but I got ecstatic anyway.  He said Bus and he said it with little delay.

I had to give him a big hug.  We know have 4 words (well sort of): "Mama, Ba-ss (Bus), Pa - p (pop) and O - pa (open)".  Yes, they are not understood by all but the fact that he has the sounds and is trying to put them together is so exciting!

Andrew still needs a lot of prompting to try words but we are on the right track.  He has a lot of sounds he just has not quite figured out how to put them together.  I look forward to speech therapy tomorrow and what word he might develop in the short 45 minutes.

The space underneath the chair

Year 1 she cries

Year 2 she throws a fit

Year 3 she runs from the room

Year 4 she screams as she sits in my lap

Year 5 ...  She finds safety only in the space underneath a chair.  Temperature not taken, blood pressure not taken and the doctor on hands and knees checking her ears and eyes.

It's a routine yearly check up.  There is no immunization scheduled just your basic check up for school. No big deal to most kids and no big deal to Mom.  But for my princess the anxiety got to be so much that she could only find solace under a chair.  When the chair was removed she crawled under the chair I was sitting in grabbed both legs and wouldn't let go.

I have to check myself at this point - my patience weighing thin.  What do I do?  How do I comfort her and still get the appointment over with?  Thankfully, I did not have to make such a hard decision.  Abby's pediatrician got down on the floor (in her dress) and commenced the exam.

In these moments counting to 10 and taking deep breaths and stepping back is so hard for me to do.  I have learned that in these moments I am tested.  Tested as much as she is.  It is a no win.  Her pediatrician says "maybe it is time for Abby to see a development pediatrician" and I agree.

I took the info the doctor gave me in to therapy this morning.  The report from her OT is that Abby had a hard time visually today.  Her SLP reported that she was ok during speech.  They are in agreement with her pediatrician - things are getting harder.  This just confirms my fears.  

I am at the point where I do not know what is behavior and what is anxiety/SPD.  I do not know how to be mom and therapist.  How do you prepare for these moments?  How do discipline when you don't know the cause?

Somedays I wish I could crawl underneath that chair with her...

Adaption

"Adaption" as grown ups we take adapting to our surroundings, to our life changes and to the world around us in easy strides.  A little girl with SPD finds adapting to be just as challenging as walking for the first time.  Every day brings a new change to adapt to and so goes our journey.

Since last I blogged we have had many changes in our family; some progressive and some concerning. So let me catch up a bit.  Abby continues with ST, OT and is now receiving PT services, she has added a few more fancy terms of why she is the way she is, adding to CAS is SPD, Dyspraxia, & severe hypotonia.  Andy is still not speaking @ 27mths which has concerned his therapists enough to set in motion a frequent therapy regimen.  Possibly the biggest change we have had is that we have introduced a new little one into our family: Archer who is now just under 4mths.

I will post more about Andy's progress in a separate post.  I have titled this post "adaption" and although change effects everyone including my 2 year old it seems to be an ongoing battle for Abigail.

This year Abby will need to adjust to many things, a new therapist, a new classroom, a new teacher, new friends and most of all a new brother.  The changes that are happening in her life seem to be elevating her already challenged cooping skills.  She has becoming "needy" at home.  Seeking attention in anyway she can - throughout the day and throughout the night.  It does not stop.  She has developed what I refer to as safe word/phrases that helps her when she needs more stimulation.  "applesauce, applesauce, applesauce" over and over and over again for no seen reason.  

Now turning 5 I have been told by therapists, doctors and other mothers that Abby should be able to hold a conversation for a few minutes, she should be able to watch a full TV episode, she should be able to sit for at least 15 minutes in an organized circle.  These are things that are so hard for my princess to do.  She needs to be jumping, swinging, standing on her head.  We have an everyday routine which puts her in bed by 8p yet she can not stop her body and her mouth until close to 11p.  

With a new little one in the house I do have to say that my patience with this symptom of SPD is very thin.  I ask myself "why can't she just stop, I am telling her to stop".  It rains one day and we have anxiety over umbrellas, it's sunny out so we have anxiety over whether we will go to the pool or not.  yes even the weather effects her and the way she will handle the day.  

Good days are far and in between at this point and I find myself frustrated to the point of yelling.  Then something happens that pulls me out of my own frustration and into hers.  Like not being able to move because there is a truck in the parking lot and it is idling and the sound of the engine, the smoke coming out of the muffler, and the smell the diesel is producing is just too overwhelming.  So we stop and we wait for these things to take root in our body.  We wait for our noses to acclimate, for our ears to stop vibrating and for our eyes to process what these new things are.  We wait, just a minute, sometimes even 30 seconds - which seems like an eternity to others.  Andy holds her hand and I pat her head and we walk into the building leaving the truck behind.  This truck causes a domino effect for the rest of the day - its like she has just taken a big swig of Red Bull.  She seeks stimulation continuously the rest of the day.  How frustrating it must be to not be able to stop... 

What do you want?

"EH" - "EH" - "EHHHHH" this is the sound you can hear from my 15 month old throughout the day.  Does he want food?  Does he want to sleep? Does he want a toy?  What is it that he wants?  I can tell you on most days I lose a little bit of the patience that I have built up over time.  "What do you want!?!?!"

It is like when you brought your newborn home.  Every sound that new precious package made you soon found out meant food, sleep, bond time, playtime.  I feel this 15 months later.  Like I am trying to guess what every cry or sound means.  The problem lies in the fact that my little man has specific wants now.  He wants "that" toy or "that" thing to eat.  It's a guessing game - a long, long, long guessing game.  Eventually you will get what he wants but it takes a while - or he just gives up on you.

So many of you may be saying "well, Melissa, come on he is only 15 months".  I respond by saying that that is what we told ourselves about Abby for the longest time.  Well she is only 18 mths, she's only 2 year, she's only 3.  When does it end??  I refuse to play that game.  Andrew is trying to tell us what he needs - but all that is coming out is that he needs something.

Finger pointing - thats what I want!!  I want him to point to what he wants.  Point to what he needs.  This most children do at this age - but expressively, Andy does not use this communication skill.

The state we live in offers an early development program called Birth to 3.  Given that Abby has CAS we thought that we should have Andy evaluated.  Just before Andy turned 15 months B23 came to evaluate Andy for any developmental concerns.  There are many areas of concern regarding Andy.  After Andy's 15 month check up with the pediatrician they are also concerned about Andy's development.

Most of the concerns regarding Andrew are the following:
In Communication:
Slightly below average in Receptive Language: this is the understanding of language that others speak
Significantly below average in Expressing Language: this is is the language that an individual uses to make verbalizations and to use words.
In Adaptive (self - Help) - this addresses eating, dressing, toileting and personal responsibility.
Andy was assessed to be significantly below average.

The plan??  Well we have a few more tests to have done on Andy - a Oral Motor Control test and a hearing test.  However, the group found Andy significantly behind and therefore will start working with us (Andy & his family) on adaptive and communication issues.

Andy's service coordinator and I spoke at length yesterday about what the needs of Andy and the needs of his family is at this point in time.  The biggest thing is the ability to communicate.  Although CAS is not diagnosed until much later - there was talk about how the areas specific to his delays are also areas of delay in children with CAS.  Because of that - the first thing we will try is getting Andy to point to pictures.  The other goal is to introduce signing.  Andy will start receiving services in 2 weeks.  We are hoping that we can at least get Andy to start gesturing.

Until then we will try our best to understand "EH".

The Joy of a "Doughnut"

I don't know how to explain how proud I was when my daughter made the "t" sound in final position.  I remember asking her what she would like for breakfast and as clear as any 3 year old could be she said "I wanna doughnut."  I couldn't help myself I cried.  I called everyone I knew and had her repeat the word.  Every repeat was right one.  Every single one - which is a big thing for a child with apraxia!

I remember being proud with the first roll over, the first crawl, the first sound and all those other important firsts.  With my daughter I consistently get firsts and I consistently cry about them!!  The first time she made a "K" sound the first time she said a consonant/vowel (C/V) word,the first time she said a whole sentence.  These are firsts I will always remember, just like when she used to scootch backwards around the living room.  She makes me proud everyday that something new takes route in her words.

I wait patiently for my son to also take flight with his speech - for I know I will be as gracious as I am with my little girl.

Apraxia of Speech

Imagine if you knew the words you wanted to say but when you put out the effort to say them the words became intelligible?  Frustrating!  Imagine trying to understand and translate for someone whose words were missing? Frustrating!  But that is every day in a family who have loved ones with Verbal Apraxia.

Apraxia (CAS) is a specific speech disorder in which a child has difficulty planning specific movements with their jaw, palate, lips and tongue in order to create speech.  The brain does not tell the muscles to perform in the right sequence and therefore words become intelligible.

My Daughter was diagnosed with Apraxia when she was a little over 3 years old.  When she was 2 she was diagnosed with ELD (Expressive Language Disorder) but did not qualify for speech services.  When she turned 3 we took her to be evaluated by the public school district.  At this point any words that she had used in the past she had dropped and no longer could say.  She was considered non-verbal.

My Daughter started working with a school district assigned SLP (speech and language pathologist) with the assumption that she had ELD.  The SLP evaluated her in several categories and learned that her vocabulary was above normal expectations for her age and she was able to used that vocabulary properly.  This ruled out ELD as a possible diagnosis.  My daughter showed no signs of any other speech related delay so the SLP started working with her through a phonic approach.

After several months of this approach my daughter showed no improvement and in some cases had actually dropped sounds that she had previously mastered.  Her SLP decided to take another route.  She decided to work with Praxis Cards.  Praxis means "planned movement".  These cards broke down words with wrong sounds that moved into right sounds.  A progression of sounds that lead to the right words.  She did well with Praxis cards but there was a continuous loss of progression or addition of sounds that were not in the words - such as an "a" at the beginning or end of a word.  My daughters SLP was able to diagnose her with Verbal Apraxia through her observances of the inaccuracies of my daughters speech.

Now that we had a diagnosis we knew that there would be more issues to come.  Soon my daughter started to show signs that a sensory issue existed - signs that when she was younger we thought was "just her age".  Such as not wanting to eat certain foods.  Being on the "white diet".  Now at 4 she still eats hardly anything.  She does not like certain textures - she will tell you that colored foods "feel silly".  She also can not handle foods that are warm or hot.  She does ok with cold things like ice cream and popsicles but her dinners meals we have to bring to room temperature before she will eat it - no hot temp - not even luke warm.  She also confuses hot/cold and hearing/smelling/tasting.  For instance she will cover her ears if something doesn't look right or cover her mouth if something is too loud.

So our journey with Apraxia begins.


find out more about Apraxia @ Apraxia-KIDS

A few specific Links:
Dear Teacher
If I could only tell you I would say