2013-05-15 09:18:55 by Sarah Sanford, Patient Family, as posted on the inside.akronchildrens.org blog.
Swings. Fans. Nirvana on the CD player. Weighted clothing or blankets. Blacked out rooms for hour after hour of sleep. Extreme tastes. Bubbling fish tanks. Joint compression and deep, tight hugs.
These are the things that make Baby Jude the happiest. The calmest. And the most at ease. Some of these things (we call ‘em bells and whistles, which is totally ironic because Jude HATES bells and whistles that startle him) are not available at the ready.
Not all the time.
So, we have to do a little prep work to take Jude places.
Then go anyway. Too tired, too much or not. We will at least go. And at least try.
That’s a snapshot of leaving the house with a toddler with Sensory Processing Disorder (SPD) and Autism Spectrum Disorder (ASD) – a snapshot of leaving the house with Baby Jude.
Baby Jude’s diagnoses (and they keep on coming) should never be a real surprise to us – not even the initial cerebral palsy (CP), fetal alcohol effect, cortical visual impairment, hemiparesis, dysphagia, or developmental delays. We could see something was off.
Disorder after disorder has been diagnosed. However, no matter how we assumed or expected a new diagnosis to be, it can still knock a parent onto their heels a bit. Just for a minute.
It happens in small ways. Big ways too. When your boy is scored as “Definite Dysfunction” in ALL categories on the most recent Sensory Survey (and kind Miss Angela tried to help him out and score him gently), it knocks you onto your heels.
When the third neurologist on his team finally puts into writing what you, as his mother, have been trying to avoid – an ASD diagnosis to contrast, yet somehow complement, his SPD diagnosis – it knocks you onto your heels.
When his team and awesome vision therapist suggests we test his sense of smell with two different vinegars, and he is not at all offended by the aroma, and in fact tries to drink them, it knocks you onto your heels.
When during a well orchestrated (thank you Help Me Grow Tim, Cleveland Sight Center Brenda and Summit DD Donna) team meeting with Akron Public Schools, we all agree that our boy is a good bet on landing a slot at an incredible APS Special Ed (where the teacher has her master’s in visual impairment) for a January start date, it knocks you onto your heels.
When you attend, participate and agree to go to the next support group for parents of children with visual impairments and multiple disabilities, it knocks you onto your heels. Just for a minute.
So, here is what I ask of you, the general public. When you see someone with a challenge in their life, or a challenged loved one, do them, me, my husband, Jane and Jude a favor, don’t stare.
Don’t wonder why an almost 3 year old is in a high chair at a restaurant eating pureed foods or bite-sized bits of bread. We know it looks odd.
If he melts down and beats his head into my collarbone, don’t take too much notice. If he uses a bright, red, heavy blanket on his lap or a DynaDisc to sit decently, no need to pay attention.
Because, just for a minute, in some festival, restaurant, zoo or church, we are just a small family trying to take a minute. A minute to our perfectly imperfect, diagnosed (or diagnosable) selves.
Just for a minute.
And you can rest assured, we ALWAYS take all 5 steps of Baby Jude preparedness before leaving home. If big old ceiling fans could travel, we’d pack those too.
Grateful, Prayerful & Hopeful.
Read more about Baby Jude in the rest of Sarah’s blog posts.
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