Another update...

So I requested a copy of B's Speech Evaluation and what did I find out?  He was diagnosed with a Developmental Speech Disorder and an Expressive Language Disorder.

So what does all that mean?

Well for the first part - the Developmental Speech Disorder - this includes a severe articulation & phonological delay.  According to the results of the assessment he is off the charts on the low end.  His score was equivalent to skills of a child between less than 2.6 years old to less than 2.9 years old.

As for the second part - the Expressive Language Disorder - this includes a mild language delay.  On this part of the assessment, the scoring is broken between basically 'receptive' and 'expressive' language use.  For receptive language abilities, he was just a few months delayed from his actual age.  For the expressive language abilities, he was a year and a few months delayed from his actual age. 

It is SO wild to be able to know what you are working with.  It helps me to understand how to approach our method of homeschooling for the upcoming school year - Kindergarten!

I also should have added that the SLP (Speech Language Pathologist) said, "he has excellent potential to reach his goals."  So that is very encouraging.  I do believe it will take some time though to reach all of the goals that they have for us.  At least we have the plan in place and now can move forward on that.

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We are also still awaiting the written report from our Evaluation for Jase last week at the CDSA.  Once we have that we can start his speech therapy.  We are also waiting to get him an Occupational Therapy evaluation to see where to go from there...

So I am thankful that the boys checked out healthy yesterday at everyone's well visit.  Also, the great news is that we are now established with our new doctor and can work on getting the appropriate referrals that we need.

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.

--sigh--

Well I am so glad we decided to go in to the CDSA for the evaluation today.  I couldn't be more pleased with the two people we worked with.  They were very friendly and very knowledgeable - we really couldn't have asked for anything more.

We are awaiting their official report but I think the sum of it will be to refer us to an occupational therapist who will assess and address any sensory processing issues and/or motor skills.  We will also receive a referral to a speech/language pathologist who will address his lack-of-speech skills.

One of the evaluators was a speech/language pathologist who said she was quite certain he didn't have apraxia of speech.  That is obviously a great relief to us as well.

We will be able to receive in-home services through the summer (Thank You Lord!).  Both of the evaluators expressed that they felt confident that he would start improving very quickly.  I can do nothing but Praise Him for this.  My faith grew even stronger today.

J's First Evaluation Tomorrow

So tomorrow is finally almost here.   So many times I have questioned whether to go through this particular evaluation or not.  I think my 'need to know something' has won this battle.  They should be able to confirm/deny if he could benefit from early intervention services.  I am not expecting any definitive answers.  I am only expecting a 'yes, we believe there are developmental delays'.

Only the good Lord knows what will play out tomorrow.  I trust in his guidance and protection throughout the process.  I know he can and will see us through this.

Looking forward to being able to update tomorrow...

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.

Much more than you realize...

After reading an article this morning about a girl who died from anaphylactic shock brought on by a tiny trace of peanut, it reminded that most people don't quite understand the severity of it all.

We are now maintaining a diet free from many allergens.  It is as follows:

• Milk/Dairy (life threatening to B; myself, J & Z avoid as well due to intolerance)
• Wheat/Gluten (intolerance)
• Peanuts (potentially life threatening; won't go near it)
• Most Tree Nuts (B has life threatening reaction to pistachios and it is best for him to avoid them all because of cross contamination risks)
• Soy (intolerance)
• Egg (intolerance)
• Yeast (intolerance)
• Citrus (only myself & Z; it comes through his system via breastmilk and burns his bottom)
• Tomato (only myself & Z; it comes through his system via breastmilk and burns his bottom)
• Strawberries (only myself & Z; it comes through his system via breastmilk and burns his bottom)

Now this may sound like quite a challenge and to be honest - it can be.

I think we are getting along okay now that we have adjusted.  We pretty much can't leave the house without having to pack plenty of food to go along.

We mostly avoid social gatherings where there will be food present just because the risk is too great for a reaction.  It is so hard for most people to understand that and there have been hurt feelings over it.  Oh well.  It is my responsibility to protect my child (just like any parent should) from potentially threatening situations.  I will do that to the full extent possible.

The article about the little girl who died as a result of a food allergic reaction can be read here:
http://www.allergykids.com/blog/emilys-story-a-food-allergy-angel/

It is heartbreaking to know that this could have easily been avoided. 

A few smiles and giggles...

So today we took another trip to the zoo.  The boys just love it there and we have really enjoyed it as well.  We have a 2 year family membership so we will be making many trips over the next 2 years.

B is quite fond of the lemurs on Lemur Island.  The lemurs were active today jumping from limb to ground.  The boys really enjoyed watching them play around.

J seems to really get a kick out of watching the seals swim down in the underwater viewing area.  He gets very excited when they swim by and does this cute sound and wiggles his arm.  It is quite precious - I wonder what is going through his little mind when they swim by.  :)

We also confirmed that the polar bear is indeed alive.  LOL.  He always seems to be so lazy and just lying around.  Well we just happened to stop back by his exhibit on the way out.  There was no one up there so we had a nice view of him laying on the rock.  Well right after we walked up, he started getting up and easing his way down off of the rock and toward the water.  We watched him as he ever so slowly got into the water.  He finally ended up getting in and swimming around a little.  That was very fun for the boys to see.  Too bad we forgot our camera.

The picture of the ring-tail lemurs above is from last week's zoo trip.


So after the zoo trip, we headed to Wal-mart to pick up a few things...
Before we went in I was using this waterless hand cleaner stuff to clean the boys hands.  It is in a spritz bottle of sorts.  Each time I would spritz it, J would just giggle and smile and hold out his hand for me to do it again.  Needless to say, his hands were clean by the time we actually went in the store.  :)

While we were there we picked up a spray bottle for him to play with since it seemed that he was just tickled to play with the stuff in the truck.  As soon as we got back to the truck, I put some water in the bottle and showed him how to use it.  It made his day!!!  He LOVED it!!!  He was giggling, smiling and carrying on.  It surely made my day to see him so happy.  He played with that thing until he fell asleep on the way home and then B took over with it.  It really is the simple things in life that bring the most joy to our hearts - no matter what age we are.  I sure felt joy in mine today.

Peace Abounds!

This beautiful hymn surely puts into words what I cannot. Today, I feel a sense of peace that I haven't felt before. It is well with my soul - indeed. :) Enjoy!

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

Beginnings...

Here we are.
Things are different. Things are changing.
I have an understanding like never before yet there are so many questions.

There are many potential answers. Which ones are right?

For this I will turn to the Lord in prayer. I know his provisions will come. I know his wisdom will be further revealed. I just need to keep the focus on Him.

From 'The Ministry of Healing' I find peace in the following:

"The Lord's care is over all His creatures. He loves them all and makes no difference, except that He has the most tender pity for those who are called to bear life's heaviest burdens. God's children must meet trials and difficulties. But they should accept their lot with a cheerful spirit, remembering that for all that the world neglects to bestow, God Himself will make up to them in the best of favors.
It is when we come into difficult places that He reveals His power and wisdom in answer to humble prayer. Have confidence in Him as a prayer-hearing, prayer-answering God. He will reveal Himself to you as One who can help in every emergency. He who created man, who gave him his wonderful physical, mental, and spiritual faculties, will not withhold that which is necessary to sustain the life He has given."

It is SO easy to feel overwhelmed by what is coming. It is SO easy to turn to your own devices, your own abilities while searching for answers to the challenges of life. I have been doing just that. I have spent countless hours on this computer 'googling' this and that. I have gained from this - there is no doubt. But now I feel the time has come to surrender my 'control' over to Him who can really work things out.

This blog will be about our life from here forward. This blog will reveal the challenges we will face. This blog will reveal the glory of God!