Grayson Cole

Our little man, Grayson, is 4 years old and has a double diagnosis of Autism Spectrum Disorder as well as a very rare Chromosome Deletion of 6q25.2-25.3.

Grayson first received the diagnosis of the Chromosome Deletion at the age of 15 months and not until recently (just after his 3rd birthday) did we receive the additional diagnosis of Autism Spectrum Disorder.

Here is a brief history of Grayson:

Labor/Delivery:
For several days leading up to Grayson's birth I felt as if something was not "right" I just had the constant feeling of pressure and every time I stood up I felt as though he was just going to drop out. I also felt as if I was leaking fluid...but every day that I went in to the hospital with these concerns they tried to tell me nothing was wrong (this was a military base mind you).
Finally, when I went again for about the 7th time...they took an ultra sound and noticed that I had just about no fluid left and realizing this they rushed to get me induced. I had to be induced and manually dilated.
I was in labor for 21 hours, never reaching past 5cm as well as having to be taken on and off Pitocin as Grayson's fetal heart rate dropped very low several times. Each time they took me off, I shook uncontrollably for about an hour...this went on for hours.
Eventually I developed a fever (I remember my Mom and Mother-In-Law saying I looked very flushed) and as soon as my Mother-In-Law too my temperature panic happened as the fetal heart rate plummeted :( In the blink of an eye, a team of doctors and surgeons came rushing in and took us straight into the O/R for an emergency c-section.....by the way, I was shaking uncontrollably again during all this because they of course had to stop the Pitocin.
When they opened me up and pulled Grayson out he was covered in Meconium.

You could tell Grayson has been "stuck" in the birth canal for awhile. He looked like he had just been in a boxing match :(

I had to be put on antibiotics (which I wasn't excited about seeing as how I would be breastfeeding immediately as well). We only had one more scare where my Mom was holding Grayson and she called for the nurse saying "He is blowing bubbles" and they rushed him off and had to aspirate.

Grayson also failed his New Born Hearing Screen. We went back a few weeks later to do the test again...he failed again....so we set up an appointment with the Audiologist who ran further testing in which he still failed but also indicated a lot of fluid build up.

Fast Forward ---We moved out to TX to stay with my family while my husband was deployed and got set up with an ENT/Audiologist there as well. The ENT suggested tubes and a Sedated ABR. Tubes went in successfully when Grayson was about 5 months old and the ABR followed directly after surgery which presented Moderate to Severe Hearing Loss. They wanted to re-do the ABR in 2 weeks just to see what it would say once the fluid had enough time to drain out. 2 weeks later, still Moderate to Severe Hearing Loss Results.

Grayson began to wear Hearing Aids at 8 months old and boy did he look cute in them. He tolerated them for awhile but slowly and slowly they seemed to be bothering him.

Grayson also started PT and SLP at 8 months old as he wasn't crawling, I had to really teach him to roll over...he just was not meeting the "typical" milestones for gross motor development.

He also began wearing a Cranial Band/Helmet around 5 months old due to severe Plagiocephaly and Brachycephaly. He also has moderate Toricollis which the PT helped (he still slightly has it on the right side but not to much).

He wore 2 cranial bands as he grew out of the first and had to have another one to continue the "correction".

Around 15 months old Grayson was really having a hard time with his hearing aids so we took him to see his Audiologist and much to our surprise Grayson gave normal/perfect hearing with AND WITHOUT his hearing aids. His Audiologist was pretty befuddled so we came back again a week later and did the hearing screen just without the hearing aids this time and sure enough ---normal/perfect hearing! His Audiologist had no explanation for this amazing yet strange "cure" to his hearing but ever since, during his hearing screens, he has given normal hearing :)

At 15 months old is also when we received Grayson's first diagnosis.

Genetics had already ran tests that showed to be normal but during our last visit with the Neurologist before we moved back home as my husband was to be returning, he asked if I had ANY last questions and all I said is, "I just want some answers...I want to know WHY my son is having these developmental delays so I can do whatever I can to help him in the best way possible".... the Neurologist finally put in for one more lab to take his blood and urine...and whatever test he ran, sure enough there is was...a Chromosome Deletion.

Chromsome 6q25.2-25.3 is Grayson's deletion. The Genetics Department knew nothing about it except for one little print out about 4 other cases in which the children had SIMILAR deletions that overlapped into Graysons 25.2-25.3....but still nothing close enough to give us any idea on what goes with this deletion and what to expect in a prognosis of his development.

1 in a Billion we were told...makes Grayson a very special boy but also makes it very hard to find answers or be able to know what his future could possibly look like....

Will he ever talk? If he will...when?
Will he ever start developing "normally"...when? Will he ever catch up to other kids his age?
Will he always be "smaller" in size or will he just suddenly start growing?
Is this behind the reason he gets sick so often?
Will he develop any future medical issues like these kids whose deletions overlap his?

We had no answers...and we really still do not have any of the answers to any of those questions and the million more we come up with on a weekly basis.

The doctors said, "Grayson will show us how this is going to go".

Since then we have seen doctors in TX at Cook Childrens, NC at Chapel Hill, NYC at Morgan Stanley Childrens Hospital/Columbia University Hospital and MA at Boston Children's Hospital and doctors a part of Harvard Medical.

No one can really tell us a whole lot about his deletion.

We even were told that if Grayson was to start speaking it would most likely be around age 3-4...we are at age 3 right now and still no words but we are hopeful and he continues to make more and more noises!

We have also been told that Grayson has an undeveloped Corpus Callosum and Delayed Myelination of the Brain.

We have done a lot of research on our own and have been able to connect the dots on certain things but there is still so much unknown.

We found an amazing group on FB for parents of children with C6 Deletions and it has been amazing having that group of people to share things with and to pick the brains of parents whose children are a little older than Grayson and find out what they are doing, when they started doing it ...etc...

Grayson does get sick...a lot..high fevers that go up to 106, lots of tummy bugs and lots of upper respiratory viruses/infections and the occasional ear infection and strep throat. But boy is he a trooper when he is sick. He is already the sweetest kid -totally un-biased opinion of course ;) -but when he is sick he truly is the easiest sick kid to take care of.

We also know he has an extremely high pain tolerance...which is both a blessing and a curse because the fact that he also is non-verbal makes it very scary to not be able to know how hurt he really is when he does get hurt and not know how sick he is really is because he barely acts sick until he gets a fever or is throwing up.


Double Fast Forward --- Grayson is now 4 years old. We received an Autism Spectrum Disorder diagnosis as well last summer (just after his 3rd birthday). This did not come as any shock to us as all of his "symptoms" of "traits" about himself resemble a child on the spectrum. We are still waiting for the full evaluation to find out "where" on the spectrum they believe him to be.

He is currently in a full day preschool program and in a class of special needs children and as he meets certain criteria he will move to classes with more neuro-typical children than special needs children. We LOVE his school. His team there is amazing.

He is still non-verbal but has his own ways of communicating. He uses a communication book that goes from school to home and he is doing quite well with it. They are also practicing with a communication device. He also communicates by taking our hand and walking us to where he wants to go or what he would like (taking us to the refrigerator or pantry). Even though he is non-verbal he is very clear in his communication of certain wants/needs.

He is progressing well in his Gross Motor development. He is walking great and starting to run. We are working on jumping and dancing as he does not do either. He will kneel to play which is great and he is good with his great with his transitional moves (sitting to standing, standing to sitting, sitting to lying down, lying down to sitting...etc) and he is finally able to climb up on furniture. He is also able to play on playgrounds pretty well (he still does not have a good sense of safety awareness so you have to hover over him still) but he can play quite well on them and slide down slides of all sizes and shapes all by himself safely. We are still working on stairs as well. He can go up stairs by "climbing" them and he can walk up them if there are bars to hold on to. He cannot really go down stairs yet unless their are bars he can hold onto.

His fine motor skills are also coming along great as well. He is getting really good at fine motor manipulation which is great to see. He still uses his thumb to press buttons and point but he is starting to use his index finger which is huge for us!

His highest scoring area is in Problem Solving and he is a brainiac at problem solving skills.

He is also great at matching games --colors, shapes, numbers, animals, you name it, he can match it. He is also great at memory games. He has started showing us he is able to count and understand letters.

He receives all his therapies in school as well:
PT = 2x30
OT = 3x30
SLP = 3x30
and as of this past week his school and team have decided to add in ABA into his IEP and they are graciously offering us In-Home 1:1 ABA Therapy for him and because the company offering this to Grayson contracts through the school, it will be at no cost to us! I cannot begin to tell you how grateful I am for that!

Grayson has a big team of doctors as well:
Neurologist
Geneticist
ENT
Audiologist
Ophthalmologist
Orthopedist
Cranial/Facial
Nutrition
Feeding
Homeopath

As of right now the diagnoses Grayson has along with any other medical findings are:

-Chromosome 6q25.2-25.3 Deletion Syndrome
-Autism Spectrum Disorder (non-verbal)
-Underdeveloped Corpus Callosum
-Delayed Myelination of the Brain
-Optic Nerve Hypoplasia
-Hypotonia (low muscle tone)
-Global Developmental Delays



I will be updating this part of the page often as things change with our amazing boy :)