Support and Validation

A day six months in the making finally arrived - a day that has been much fought for, much anticipated, and very, very needed.

Jack’s school feeding evaluation was yesterday.  The journey that brought us here has been a long one, but worth every moment.

Jack’s feeding issues have been…well…an issue since birth.  We’ve worked so hard.  Jack has worked so hard.  He has made so much progress.  Really, he has, but he still needs help.  He still needs assistance to eat, regulate, interact, and do the things that preschoolers do.

Feeding not only causes Jack anxiety, it causes ME anxiety.  Never knowing when he’s going to choke, gag, or vomit has done a number on my stress level over the past couple of years.  Not knowing how he was managing at school, except to see food come back uneaten, was hard for this mama bear.

Six months.  That’s how long it took to get the feeding team out to evaluate Jack.  It took six months of referrals, discussions, and strongly worded emails, but it happened.  Finally.

Honestly, I wasn’t 100% certain it was going to happen this week.  So, you can only imagine my surprise when I arrived to pick Jack up and saw that the feeding team was still evaluating him.

I held my breath, not wanting to disturb the situation, but intensely curious as to what was occurring.  When they looked up from their paperwork and attending to Jack to speak to me, I felt like time was standing still.  Did they see the problems we were having?  Did they acknowledge it?  Or, was this going to be pushed under the rug and not addressed as feeding is “not an educational issue”?

They started by saying that they saw some positives.  They saw that Jack was far more successful at breakfast as he is in a smaller group and the sensory stimuli are minimal.  However, once snack rolled around and more was going on, Jack became dysregulated.  A child in his class cried at one point and Jack pocketed his food immediately.  He also began to stim and perseverate.  Feeding began to break down.

They didn’t see the oral-motor problems, but they saw enough.  They saw sensory issues that cause my boy to struggle at school.  They also saw that little was being done to address it.

And they got it.

They saw that verbal prompts weren’t helping when Jack got too dysregulated.  They recommended more visuals.  They recommended sensory, sensory, and more sensory prior to meals/snacks.  They recommended sensory during meals/snacks.  They didn't like the visuals that are being presented to Jack right now and they plan to make new ones for his teachers to use.  They also are going to encourage more use of visuals with Jack as his ability to process verbal instructions decreases with stress and sensory overload.

And I wanted to scream up to the heavens.  Thank you!  Thank you for seeing it!  Thank you for seeing that sensory processing problems don’t just manifest in the child that screams and disrupts!  Thank you for seeing that a sensory kiddo can simply shut down, start stimming, and become closed off to the rest of the world.  Thank you for seeing the need, for listening, and for acknowledging it!

The best thing to come from it?  A meeting and accountability.  A meeting between the feeding team and Jack’s school team - all of them - to discuss strategies that should be implemented to help Jack eat safely at school and with less stress.  Accountability due to a reevaluation after a few weeks of implementation of sensory and feeding strategies.  That's what I really wanted - a way to get my boy the support he needs and accountability to ensure followthrough.

It was a fight - it was one hell of a fight - and it was frustrating to get to this point; however, getting that validation that they see what I see and they see a problem that needs to be addressed is so validating.  It makes me happy to see that the advocating does come to something - that the fight was worth it.

But then I remember, results or no, Jack is always worth the fight.

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