Friday, February 19, 2016

Somewhere on the Spectrum. Written by Anna Grym

Somewhere on the Spectrum

*This story starts with a letter about when was first diagnosed.  Then entries about how much progress he has made over the next 3 years, almost like a diary.  Enjoy!


Gavins Story.

Gavin was a full term beautiful 6lbs 13oz baby boy.  There were 10 tiny fingers and 10 tiny toes and no signs of anything to be concerned about.  His big sister Gabriella was a thriving typical child.  Autism had never even crossed our minds!

When Gavin was about 18 months old we noticed he was delayed in a few areas, speech was lacking, fine motor skills were not developing and this baby never slept.  Our pediatrician started getting concerned, but not enough for an evaluation yet.  By the time Gavin turned two he barely spoke at all, and still no gains in fine motor and sleep was nonexistent!  We were referred to early intervention for an evaluation. Gavin qualified for speech and occupational therapy in home 1 hour of each a week.  This continued for a year and at 2 ½ he also started private therapy speech and ot every week.

We were approaching his 3rd birthday and still not much progress.  His therapist recommended an evalshe had even dropped the word Autism.  We began to panic.  Our hearts sank.  How could our son be or have that!?!???!!?  No way!  Not our perfect baby boy!  I mean he has eye contact, he speaks some words, and he doesnt slam his head on the floor!  Our son is fine.  After some research and hours, which became days of crying, the call was made. 

We saw an amazing psychologist who was very nice and saw him privately so we would not have to wait the 1 ½ yrs to get him into a developmental pediatrician.  And that was when we received the first diagnosis.  Our baby is on the spectrum.  

Therapy was bumped up.  He has therapy at school twice a week, at Good Shepherd speech and ot, he has behavioral support full time at school, and 15 hours a week in home.  And finally we have PROGRESS!! 

Since then and after multiple evaluations, we have seen a Developmental Ped and received our second diagnosis of Autism, and recently he went for a diagnostic Autism test to confirm for a third time his diagnosis Autism Spectrum disorder.  Each and every time I cried, but each time I cried less.  No matter what he is labeled, to us he is perfect!


Sincerely, 
Proud Parents of a typical and a neurotypical child
Floyd and Anna Grym
And the most amazing Big Sister ever,
Gabriella

Thank you for reading our story.  


Here are entries about the past 3 years.  

Gavin is now 6 years old; our 6 pound baby boy is getting so big!  He has been in therapy for well over half his life, so for him this is just the norm!  He has realized he is different.  We have talked to him about autism and told him thats why he has therapy and home support.  We have explained to him that is why he struggles with many sensory issues.  He still gets overstimulated easily, and needs deep pressure and jumping and running to calm down and self regulate.   

We started Aromatherapy a few months ago.  So far he seems to be responding well.  Sleeping 6-8 hours a night, more focused, and less stimming. All in all he has progressed so much!  His speech and fine motor is just about at age level now.  I wish I could say that we were the reason for all these gains, but honestly we have had a village of support!  I can't thank Miss Amy, Miss Judy, Dr Jibilian, Sandy, Miss Donna, Miss Jen, Dr Kinney, Miss Nicole, Miss Maren, Miss Lacy, Miss Michelle, Miss Lynn, Miss Laura, Miss Desireah, Miss Holly, Dr Iyangar, (in no specific order) and all the therapists who have filled in over the years, and all our family and friends who have helped and supported us through this journey, enough for all their help!!  And my dear friend Katie who introduced me to Young Living oilsthey are giving us hope!  They werent lying when they said it takes a village to raise a child!

Gavin is now 7 years old.  I can remember the day I thought Gavin may never speak.  Would never be able to put a sentence together.  There was a time when I thought my son may never tell me he loves me.  Yet now at seven years old his vocabulary is better than most his age, he is writing, reading, excelling in math, coloring in the lines, able to participate in gym and art class, he knows more about the planets and animals than anyone I know.  Music is still a challenge as it's much to loud for his sensitive ears.  He is behind in reading.  Socially and pragmatics are still concerns.
Gavin still struggles to stay calm in some situations.  We still have safety concerns as normal fears have not set in for Gavin and he will still wander and roam.  He will stim and need sensory breaks often.  His food selections are down to about 20 total items in his diet so I need to be very creative and puree many veggies to hide in spaghetti sauce.  

Gavin still struggles controlling his body and has issues with change and anxiety about many things.  Still using Aromatherapythat's been a life changer for us!  It's true what they sayYou need to look back to see how far you have come!  I have many more thanks to add to our village these days, Miss Nora, Mrs Seagar, Mrs Merril, Mrs Seaman, Mrs Keller, Miss Joyce Dr Matt.  We have been truly blessed with an amazing team of support.  I appreciate all the teachers who have worked with Gavin since he was 3 years old and their patience and understanding with him.  I know Gavin can be difficult at times, but if you open up and let him in you will see and meet an amazing little boy!

Gavin is turning 8 years old.  Where has the time gone?  He is on grade level for all academics including reading and above level for math.  Even in the advanced math class.  There was a time he was so far behind I wasn't sure he would ever catch up.  He works hard everyday.  He is such an inspiration .  

We still struggle with food, loud sounds, socially, still needs sensory breaks, and often it hard to control his emotions.  His teacher is so kind and patient with him this year.  Thank you Mr Molitoris!  Progress is still happening even though we moved.  He had some setbacks with the loss of a dear friend due to the move.  We stopped all home support.  We continue aromatherapy which is part of our natural lifestyle, and use essential oils daily.  We have been able to support his body and he rarely sick which is huge because that throws him off big time.  He's calmer, and almost never stims.  We are working on some anger issues and working to build his self esteem.  But againprogress is being made!  

Huge shout out to Gabriella who is the most amazing big sister.  She is so patient, kind, and caring.  I thank god everyday for giving Gavin the best sister a brother could have!  Here's to another amazing year!


Anna and her family.

**If you want to be a part of this series and share your story, please email me at grapejellyonpizza@gmail.com for more information and be sure to join us daily at the GJOP page. 

3 comments:

  1. Good Shepherd is great with kids Kevin my son had speech problems also, while I worked over at racer center he got speech therapy in months he was talking. Your a amazing mom give time time he will blossom and it will all come together

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  2. I love reading my daughters story, about my amazing grandson!! Anna is such a wonderful Mom!! She will do anything for her kids! And the difference in Gavin is totally amazing!!

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  3. Thank you for sharing your story! GS is great, my boys have been receiving speech therapy there for years

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