Yesterday was Sam’s neurology appointment at Texas Children’s. Dr. Holick is really wonderful with him and with his anxious, worried parents. She has been his neuro since he was born, and she performed the EEG when he was just a few months old. I am thankful for her thoroughness and the time she takes for him. His formal diagnoses are: Global Developmental Delay, Autism Spectrum, and Hypotonia.
There are links at the bottom of this blog for each disorder that can better explain them than I can, but I will give a brief run through of each.
Global Developmental Delay is a kind of all-encompassing late development in children. He is delayed in most every area, hence the global title.
Austism Spectrum is exactly what it sounds like. He has autism, but until his appointment with the autism center and further testing, we just don’t know where he falls on the spectrum.
Hypotonia is low muscle tone. Samuel is “loosey goosey,” as we all call it. He has core muscle problems, slouches deeply when he sits, poor coordination when walking, has a wide stance, and cannot use his hands at the level that a 20 month old should be able to.
So, with all that said, the neuro is concerned that he may have some type of muscle connectivity issues, and she is doing some genetic testing for metabolic, and muscle disorders. She is fairly certain, by the MRI results, that whatever it is that it is not degenerative, which means that he should not progressively get worse. That is pure and simply put, a blessing.
She is having him add OT to his regimen at the hospital to work on sensory skills, as the head banging is just awful now. She is also having him fitted for a helmet to protect his little noggin.
So, that is what we know now. More answers, and more questions.
On somewhat of a side note, I would like to mention some things that can encourage and discourage parents of autistic children:
We love prayers. We covet each of them, as we know God listens to every one of them. He is the great physician, and I believe he will help Samuel through all of this. Please pray.
Please do not tell us that our child “Doesn’t look autistic.” Autism does not have a “look.” It is not a dysmorphic syndrome, with signs of a different outer appearance than “normal” people.
We do love support and kind words. Words can make or break a person’s day when they are struggling.
It is unsettling when people who have only briefly interacted with our child say, “He can’t be autistic. He seems normal. “
Remember, you are only getting a glimpse of such a large panoramic. For example: Samuel smiles in pictures. That’s the glimpse. But, the reality is that he does not smile in response to others, and that the picture you see on facebook took many, many tries with various toys and noises that interest him.
I truly would pay a million dollars to see that smile every second of the day, so I try to get as many as I can.
People don’t know that Samuel uses his head to “feel deeply” what he cannot sense enough with his hands, or
that he refuses to walk on grass and concrete.
There are many facets of day-to-day life
that only those closest to him see.
We appreciate suggestions of resources and advice so much. We are reading everything we can get our hands and minds around to help our child. We love book suggestions, sensory resources, and we find peace in others’ stories, as well. Knowing we are not alone helps immensely.
I realize that this particular post is
very matter of fact. But, sometimes that is easier to deal with than the worry and grief that comes when our life plans don’t work out. That is when I remember that our plan was never meant to be, but that God’s plan was. And, when we follow
His plan, things will be just fine. He knew Samuel before he put him in my womb. He has a purpose.
Thank you so much for all your messages, prayers, love, support, and kind words. We love you.
thisblandlife 
We must let go of the life we have planned, so as to accept the one that is waiting for us… I love this….. So true…thank you for sharing….for giving us a glimpse inside of Jannan's world. ❤️
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