Yesterday was one of those days that make me really hate being the mom of a child with Autism.

Today, I admit I am feeling real down.

During the Summer I decided to take Xavier to a well known Neuropsychologist to see if they could get an definite IQ on him.
There have been many times where he has been tested at school. But since most times he is unable to sit still and since most IQ tests require verbal skills he does not have, no one has been able to tell me what his IQ really is.

Plus any residential  Therapeutic Boarding school requires not only a "Butt load" of money, but also that the child has at least a 65 IQ.

This office, I was told could do a "non-verbal" test on him that would at least I had hoped give me some information on which direction I should go with him as far as additional schooling, training for a job, etc.

THE NEWS WASN'T GOOD.

Basically Xavier could not follow along well enough to complete the non verbal IQ test. he became agitated because he could not get the computer and hit the examiner. Once I gave her some reinforcers for him ( the last hour of testing)  he did better. But from the information I gave them on a questionnaire and the testing the examiner was able to complete, their testing shows his developmental age is around 3.5 and his IQ is 40.

Basically I was told that most children with developmental delays have a gap, lets say your child is 6, but they have a cognitive age of 2.
What most parents try to do is to keep that gap steady if nothing else. If they are lucky they can close it some. So if you are able to keep the 4 year gap from widening as your child gets older the gap becomes less significant.

Which means although a 4 year gap is huge when a child is 6 and they have cognitive function of a 2 yr old. When they are 24 and have a cognitive age if a 20 yr old, there is less to notice.

With Xavier his cognitive age is not moving yet as we know each year his chronological age is, so what does that mean?
It means that not only have we not been able to keep his gap steady, we have allowed it to double... NOT GOOD, NOT GOOD AT ALL.

They recommended extra therapies and supplements, biomedical stuff. Most stuff we have already tried and is WAY expensive.
Imagine going to a Dr and dropping 3 grand in one sitting. We have done that MORE than once.
Many times Mark and I laugh that if we had all the money we have spent on care for Xavier we could have bought 3 Escalades!


Needless to say I left the office feeling like the weight of the world had just fell on me.

Usually when I get news like this Mark is not there.  But he was able to attend the later part of this appointment. We had testing done on Jordan as well.

Most times I am able to go home and digest things. I usually cry it out, and start back over again. But last night we had a Falcons game to attend and there was no time to process these emotions.

So there I sat at the game, with people cheering all around me, while I sat thinking what will Xavier's life be like when I am gone.?
I looked around at the children attending the game and I felt like I was alone in a stadium full of people.
Autism can do that to you, OFTEN...

I am thinking, when I die, if Jordan is unable to care for Xavier, will someone else care for him?
 How will they treat a grown man who has the mental capacity of a 2 year old?

None of my family know how to care for Xavier and I find with most African American moms I talk to no one in their family even tries to be around their child let alone find out what it takes to care for their child. I am no different.

Most times mothers of other races have similar concerns for their disabled children, yet that have set up wills and executors of family members who will look after their child when they are gone or God forbid something should happen to them before the child has become an adult... That does not happen in our communities.

So today, I am having to "regroup". What are my plans for Xavier now that I have this news. I admit I DON'T KNOW.

I keep going back to the Initial diagnoses of Xavier and what the doctor told me then , yet today it feels different.

Maybe because back then I had YET to put in any work with Xavier. I was bright eyed with hope that he would get better. That I WOULD find out what it would take to help him.
But today after trying many things, this hits hard.

I read my daily prayer from THE VINE today and as usual, The Lord is always talking to me, I pray that today I can gather the strength to listen, to know that the cloud that hangs over me today, will not destroy me, but be for my good. It will reveal to me Gods Divine Grace..

Friday, August 17th
Good morning Kimberly,
Here's Today's Devotional from The Vine...
Bright Clouds
While he was still speaking, behold, a bright cloud overshadowed them. Behold, a voice came out of the cloud, saying, "This is my beloved Son, in whom I am well pleased. Listen to him." - Matthew 17:5
The cloud was a symbol of the Divine presence. One of the writers says the disciples were afraid as they saw the cloud come down over Jesus. God still comes to us often in thick clouds, and we are afraid too. But the cloud meant no harm to the disciples. No cloud means any harm to a disciple when God is in the cloud; and always, if we only listen, we may hear words of love.
There was a voice out of the cloud testifying to the Divine sonship. The disciples had been staggered at what Jesus had said about His rejection and death. Now they are assured that He is the Messiah, and that they must hear Him. Even if they could not understand, and if the things He said seemed to destroy all their hopes, they still needed to hear.
There are times when God's ways with us seem very hard, and we think disaster is going to ruin every good thing in our lives. At such times we should remember that He who rules over all is the Son of God, our Friend and Savior. Our trust in Him should never fail. We should always listen to what He says. When everything seems strange and dark we should never doubt nor fear.
The events that staggered the disciples then we now see to have been the most glorious and loving wisdom. So in our hardest trials we should discover true wisdom and God's richest love for us. It was out of the cloud that this voice came. Out of the clouds that hang over us come often the tenderest voiced of Divine love, the most precious revealing of God's divine grace.