Loving Blake

by Susan G
(Falcon, Co USA)


Blake was born March 24, 2000 and was our first blessing of life. Immediately he went into the NICU as I had an infection from prolonged labor.


We brought him home from the hospital at 7 days old and constantly held him for we were happy he was there.

We had noticed at a young age that he was very picky with certain things, but being our first, we didn't read much into it and our family Dr. said he was fine.

It was at about 20 months when we noticed that he may not hear properly, yet the ENT's said he was fine. At 3 1/2 he got bi-lateral ear tubes.

We moved in June 2004 and got a new Dr. They did further testing that directed us to Denver Children’s Hospital where it was found he had a birth defect of the inner ear. EVAS (enlarged vestibular aqueduct syndrome). He was given a hearing aid and we were told he should now catch up in school.

Now, in 2007, he is still delayed and the Dr.'s decide to give him a developmental evaluation. He was diagnosed with Global Developmental Delays along with Sensory Processing Disorder.

FINALLY, we are getting help!!!!!

As an Infant:

* Would hardly sleep or nap
* Always needed mom's touch to sleep
* Would fall asleep and wake every couple of hours
* Would cry anytime a stranger would come near
* Would only be held by mom, dad, Nana and Papa

As a Toddler:

* Loved to place cars and blocks in rows
* Had to put bath toys away in specific order
* Could not tolerate anything on hands
* Would scream if on grass or sand without shoes
* Meltdown with loud noises like a horn or our parrot.

As a Young Boy:

* Very cautious of surroundings
* Needs specific routine
* Melts down if siblings touch him at times
* Loves to hug and kiss at times
* Needs to sleep with bathroom light on
* Can not tolerate tags in clothing
* Wears long sleeve shirts year round
* Can't stand to have his hair cut
* Craves specific foods like carbs and starches
* Cannot tolerate loud noises
* Cannot tolerate soft noises of certain things
* Inflicts pain on self if agitated
* Any scrape or cut or fall he thinks he needs a Dr.
* Excessively ticklish
* Difficulty with fine motor tasks
* Moves slowly and cautiously
* Fearful of feet leaving the ground
* Loses balance easily
* Frequently slumps

He has MANY more symptoms and too many to list... thus why he has been diagnosed as Severe SPD.

For us getting these diagnoses has been a blessing because we had the "AHA response!”. Many people said "Oh my goodness, I'm so sorry to hear that." But that in itself hurt, though I know they were trying to be nice and supportive. But for us it was more of a blessing to have an answer to what Blake has been dealing with, it has helped us to get him the care he needs. It has helped us to become more patient and understanding.

It has been a HARD 7 years once his more severe symptoms have come out. Just not knowing what was going on with him and not understanding why he would melt down if I moved a toy or put it away. Not understanding why he'd scream he hates me or how he would hit me.

Now I understand that he has no control over these actions at times. I understand when he hates me he loves me. I understand that I can always calm him. I know what he needs and when he needs it.

There is much hope out there for SPD and learning to get through each day and move towards a better future.

This is for our son...

Dearest Blake,


You scream hit and fight
Yet you dream and see the light

At times you seem unfocused
And others you are so clear...

You laugh and love like no other
You are truly our gentle giant.

You can be so agitated,
But mom can always calm.

You are so loving and honest
When others detest and are corrupt.

Many do not understand
But mom and dad always can.

Your life is full of hope, love and laughter
Though it doesn’t always seem.

We will always be here for you
Even when you don’t believe.

There are times you may hate us
And that is ok because we
Know the real you and know this will pass.

We understand your needs
We understand your fears.

We are here to love, nurture and teach you
For we have been blessed by you with the
Gift of patience and understanding.



Dedicated to our loving son Blake who has been diagnosed with Sensory Processing Disorder, November 2007.

Love Mom and Dad
Susan and Justin G





Michele Mitchell responds... not a dry eye here! Beautiful! What a gift you are to him. What a gift he is to you. Thank you for sharing your beautiful story... hugs to you all and wishes for continued successes.

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Jun 06, 2008
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Would be very interested in your opinion
by: kay

I have a (just turned) 3 year old son who was diagnosed with SPD about 6 months ago. Sensory seeking, impulsive, picky eater, speech delay but understands everything-and listens to everything. Although he is very compassionate, loving and social with adults and children. He is imaginative and creative in play. He has most of the other symptoms your son Blake has. Our school district without seeing him, or even reading his file basically said he was autistic. We saw a developmental pediatrician who said she might consider him borderline autistic, after asking us questions and seeing him for about one hour. Which by the way (being honest no excuses- it does not help my son) My son was acting very strange when he got there, uncomfortable, clingy, scared- like when you bring your cat into the vet for shots. He is always very extroverted.

So here is my question:, with the utmost respect have you met with any doctors who have suggested autism? I am really trying to get a more clear picture of the difference. My understanding was always that autistic children are not social, and do not try to "bring people into their world" and not imaginative. I feel very lost and very upset about this entire situation, and just want my son to have the correct diagnosis so that we can help him, although what does it matter really? He needs the help he needs no matter what label he gets. I just don't want him labeled with something he does not have. I hope that makes sense. I would very much appreciate any comments.

thank you sincerely

Apr 30, 2008
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You're amazing ; your son is soo lucky
by: Anonymous

I have severe SPD. My mom knew early on what was wrong. I have to say you are an amazing mother and your son will always be grateful. iI havea mom like you who loves me for who I am. It is hard, but I deal with the sensory stuff with my mom's help. I'm now 20 years old and I can always find the sensory input I need.

Apr 16, 2008
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To Jessi...
by: Susan

Hi Jesse,

Thank you for your comment and it does seem they are similar.

I've had people ask me if I ever wish Blake were N.T. and I'm happy that I can honestly answer "NO". Even though there are rough patches there are far MORE better! I could not imagine him being any different than he is today nor would I want him to be.

He has a specific love about him that my 2 N.T. kiddos don't have. Though I love all my kids the same Blake is more intune with the feelings of others. I just could never imagine him different than he is now and I wouldn't want to because in our eye's he is perfect.

Thank you for your comment!

Susan

Apr 15, 2008
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I understand...
by: Jessi

I can relate to the part of your poem about your son being loving when others aren't. Even though my son AJ has acted out violently in the past, he has a sweet innocence about him. He's very concerned if I get a 'boo-boo' and wants to kiss it. And even when he's being naughty on purpose, the mischievious fun-loving glint in his eye keeps me from ever really getting mad. The fussy whiny stuff I see in other kids is a rare event for him. When he argues, it's usually only because he doesn't understand something. It sounds like your son is the same way.

Even though AJ's difficult sometimes, I can't imagine a better kid to call my own, and I can tell you feel the same way about Blake. He's lucky to have a mom that loves him unconditionally. There are so many parents in this world who can't show that kind of love, even when they feel it.

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