J's CDSA evaluation is finally in...

Well it has now been a week since I wrote anything here.  Time has been slipping away from me.  Well that and I feel like 'why am I doing this blog anyway?'  Is anybody even reading this?  But I will carry on for now at least...

So I got my hands on a copy of J's evaluation report completed by the CDSA.  It was very thorough and professional and we agree with what it states.

They did the following evaluations:

Battelle Developmental Inventory, 2nd Edition

Childhood Autism Rating Scale (C.A.R.S.)

Preschool Language Scale IV

Clinical Observation of Functional Communication Skills

What did they find?

Well overall they saw pretty much the same things we see from day to day.  They obviously took our concerns and information into consideration and also expressed those in the report.

Battelle Developmental Inventory, 2nd Edition
~Adaptive  (Self Care & Personal Responsibility) - Mild Developmental Delay
~Personal/Social  (Adult Interaction, Peer Interaction, Self Concept & Social Role) - Significant Developmental Delay
~Communication (Receptive & Expressive) -  Significant Developmental Delay
~Motor (Gross, Fine & Perceptual) - Average
~Cognitive (Attention, Memory, Reasoning, Academic Skills, Perception & Concepts) - Mild Developmental Delay


Childhood Autism Rating Scale (C.A.R.S.)
We completed this screening tool together based on the Psychologist's interpretation of the questions/choices.  The possible score range is anywhere from 15-60 with 15 being normal (non-autistic) and 60 being severely autistic.  The 'cutoff' score for autism is 30.  We came up with a 35 which falls right on the threshold of mild or moderately autistic.  His highest elevations were verbal communication, listening response, visual response, activity level & relating to people.

 Preschool Language Scale IV
Auditory Comprehension - rated him at 1 year, 6 months (or 18 months)
Expressive Communication - rated him at 1 year, 9 months (or 21 months)
Total Language Score - rated him at 1 year, 7 months (or 19 months)

 Clinical Observation of Functional Communication Skills
Speech Sound Production - Delayed (limited for forming words)
Oral Motor Skills - Within Normal Limits
Voice - Within Normal Limits
Fluency - Within Normal Limits  *I don't agree with this one
Pragmatics - Atypical (delayed social communication skills)

 - They also noted below normal eye contact as well.

More thoughts about J's evaluation last week...

So it has almost been a week now since J's evaluation.  I have to admit, when we first walked out of there, we both felt a huge relief about it all.  I guess it was relieving just to hear the positive input instead of wondering all of the possibilities.

Where do I stand now?

Well kind of in the same place as before.  I still have concerns about apraxia of speech and/or autism spectrum disorder.  I already know he has sensory processing disorder/sensory integration disorder.  We will have our IFSP set in place after today.  That is our plan of action.  That is our therapy decisions put into action.

I think we are going to take J (and eventually B too) to a place in Carthage called 'Moore Pediatric Therapy'.  I haven't been able to find ANY information about them at all.  That is difficult for me to accept honestly.  I am the type who wants to know as much as possible before we get involved with something.  I guess I am just going to have to hope and pray for the best here.  It is the closest and most convenient location we could take him.

Our schedule has changed quite a bit this week already.  Here is the latest:

Today - IFSP meeting with CDSA Coodinator
Tomorrow - *cancelled B's Speech*  scheduled well visits for both B & J at their primary care provider to discuss our concerns and have ourselves 'grounded' in our home location
Thursday - *had to reschedule B's Initial Autism Appt due to scheduling mistake on their behalf*
Baby Z still has his well visit that day though
Friday - B's Speech Therapy

Praise the Lord for his provisions - I surely need my share of patience and understanding this week!

First day of speech for B & other thoughts...

So B had his first day of speech today.  :)  It seemed to go okay.  I am looking forward to next week when we can get a copy of his goals and some things to work on at home - homework!

I guess the only complaint that I have is driving to Pinehurst for a 30 minute session and then turning right back around and driving home.  It takes us 30 minutes to get there so we are literally on the road twice as long as the speech session.  When you factor in that I have two little guys who don't like riding in their carseats...  Well that can be a very ugly situation.  Let's hope it doesn't come to that most of the time.  We will be going two days a week - Wednesdays & Fridays for this particular therapy.

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So for other news...

I got to speak with our Child Development Service Coordinator (for J) today.  :)
She is very nice and seems very enthusiastic about helping us get started right away.

We will meet with her on Tuesday to set up our Individual Family Service Plan (IFSP).  She has some great resources and ideas.  I can't wait to get this all planned and under way.

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So looking into next week we have a busy week...

Tuesday - Meet Coordinator to set IFSP
Wednesday - Speech for B
Thursday - Check-up for Z, Initial Appt for B's Autism Spectrum Evaluation
Friday - Speech for B

And it will just get even busier when we add in J's therapy sessions, swimming lessons for B & Zoo Classes for B too.

A bit about my concerns for Jase...

The first big thing is that he doesn't talk very much.  This sounds crazy that I just noticed this but he has always 'talked' along with familiar shows on tv.  He can say/repeat  almost anything on one of his favorite shows (we watch the same ones most of the time).  He can repeat these same things he hears on tv when not watching tv as well.  And actually it seems he will try to use them in speech to represent something.  For example when watching The Land Before Time, he will always say 'uh oh dinosaur' (dropping consonant on end of dinosaur) and every morning when he wakes up he will almost always say 'uh oh dinosaur'.  I assume that he is using that phrase as some sort of communication device but I still haven't figured out what he WANTS to say.  Moving forward, he does not hold, initiate or participate in any conversations.  He will not answer questions unless they are 'yes or no' questions and even then will only answer if it will benefit him somehow (ex: "do you want some chex?" when standing at the pantry door)  If you ask him any random questions he will not even attempt to answer - it is like he is ignoring you.  He knows all of his letters, numbers & colors by sight (will speak them) yet he can't say his ABCs.  He does use some words/phrases in context but this is very limited.  Examples:
-He will come up to me or his father and say 'up dada'.  He never calls me mama even if I ask him to or model 'up mama' for him.
-He will say 'basketball court' and point down the driveway if he wants to go play there
-He will run to the door when daddy gets home and say 'Hey it's you' (copied from a phrase he heard sometime)
-He will also say 'thank you, bye bye' when leaving or when someone else is leaving (again a copied response from something he hears us say)

As far as communicating his needs...
-He will go to pantry/fridge and point until someone helps him
and sometimes will attempt to get things himself
-He is still breastfeeding (thankfully or I am not sure he would eat much - very picky) and will come up to me and pull on me and say 'boo'
-He seems to have no recognition that his diaper is soaked and doesn't seem to care
-He DOES know when he has to poop and will do so and then his actions will indicate that he needs a diaper but he doesn't normally come up to anyone to let them know

Now for the other things that I feel indicate some form of autism spectrum disorder:
-90+% of the time he does not respond when you call his name (even multiple times, including making noises)
-He used to know his body parts but now either doesn't care or doesn't remember them (seems to ignore any requests/inquiries)
-He pretty much has no self help skills (he can put on slide-on type shoes and they are about 50/50 on the wrong feet)
-He doesn't seem to have issue with gross motor things but does have issue with fine motor skills (no recognizable crayoning, not able to properly hold scissors)
-He attempts to feed himself with a spoon but isn't very good at it
-He will push around a batman truck with batman and robin inside but not indicate that he is actually pretending anything
-He is insistent on things being 'just so' example: how he wants a toy situated before we can walk away
-He can't stand to wear clothes and mostly fights when we try to dress him (we have been working on ways to make this easier)
-He has really bad tantrums which I assume come along with not being able to effectively communicate his needs -OR- when he doesn't want something like getting dressed
-He seems to be in his own world most of the time
-He can't sit down to listen to a story or to eat at the table
-He can't settle himself or calm himself
-He has been caught spinning wheels on the stroller when it is inside
-He was notorious for stacking blocks, knocking them over and repeat and would get upset if you tried to make him stop
-He seems to have a thing about carrying something around like dvd cases.  He will bring these random objects up to me and hand them to me (no communication) and walk away.
-He does have problems with certain textures of foods - refuses them - like beans for example
-He has always had gastro issues and reflux since birth but we have been able to get this mostly under control with his diet
-He has always had difficulty falling asleep and is known to wake frequently
-He seems to have no fear of danger

This is a very brief list of what I have compiled.  All signs point to some form of autism spectrum disorder or other developmental disorder.

I am just ready to figure it all out and get on the road to as much recovery as we can.

So what is our plan?

We have an evaluation scheduled for J on Wednesday morning.  The evaluation will be performed by the Child Development Service Agency (CDSA) - Early Intervention.  They will do a very thorough evaluation based on the intake information I gave them.  I cannot tell you how ready I am for that day to get here.

We will use what we learn from them to make our next decisions (though we already have multiple plans in mind).  My understanding is that they can/will make referrals to the appropriate care providers based on the child's needs.

As for our concerns about B...
We have already had a speech/language evaluation completed on him and he will receive services through a private provider for the time being.  Once we figure out where we are going with J, we will pursue other evaluations for B to include our concerns about Asperger's and Sensory Processing Disorder.

I will be working on setting up a schedule for our daily lives.  All of the research I have been able to read thus far indicates that children that are on the Autism Spectrum function best on a very structured schedule.  This will not come easy for me.  I have always been very much a laid-back-no-schedule kind of person.  There is NO doubt that will be changing and pronto.

I am asking for prayers over the course of the next week.  Please pray first of all for our family.  Pray that we will keep our focus.  Please pray for little J.  I am not sure how well he will take the evaluation honestly.  He has a very difficult time with anything that has not been experienced before and this will definitely be a first for him.  Please pray that the Lord will guide us in the right direction.  Please pray that he will help us to see clearly what we are to do.  I feel selfish for asking for prayers for ourselves when there are SO many others out there who are suffering from many worse things than these.  So lastly I would like to ask that you make sure to pray for all of the people who are sick, hungry, lonely or upset.  There is much hurt and pain in this world for sure.  My last prayer is that those who are 'lost' will find Him who is the great healer.  I surely could not imagine how we would make it through the coming days without Him.

So what is this all about?

I know you are wondering.

The thing is... There is SO much to it that I am not sure I could post it all at once.

The short & not-s0-sweet version is this...

I believe J may be on the Autism Spectrum. I believe J may have Apraxia of Speech or other speech disorder. I believe J & B both have Sensory Processing Disorder (a.k.a. Sensory Integration Disorder) I also think there is a good chance B may have Asperger's Syndrome.

There I said it.

Why does that seem so odd? Why do I feel like I am admitting failure? Why is there a stigma with that?

Well I am not sure about the answers to those questions but I am sure that it is relieving to get it out in the 'open'. I have had this swirling in my head for some time and only letting a little of it out to a few people.

So why do I think these things about my children? I sure wish I could spell it all out in this post but it would impossible to do. I do plan to post these things as I can. I want you to see what I see on a daily basis. I want to share information that I have found.

If you are a mother or father of little ones, I urge you to arm yourself by knowing the red flags. Stay on top of the developmental milestones. I wish I had known the red flags before now.

A wonderful resource for the early signs & symptoms can be found here:
http://www.helpguide.org/mental/autism_signs_symptoms.htm

Of course it is also helpful to know the appropriate milestones to be looking for as well. A good resource for those can be found here:
http://www.cdc.gov/ncbddd/actearly/milestones/index.html