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| Because every baby deserves to be as content as baby Marshall |
Last year, I mentioned that Mads had somewhat of a speech delay. That was a little bit of an understatement, at this time last year Marshall was virtually nonverbal and mainly communicated with some sign language, pointing, grunting, and physically showing us what he wanted.
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| Like fighting superheroes |
We dealt with, what we thought at the time were tantrums- now we know the difference and these are 'behaviors', on the daily. I could see the desperation in his eyes to be understood and how hard he would fight to try to form words but nothing but jibberish fall from his lips.
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| Pictured here 'groping': a term for when they are trying to reach those words. If you see a child doing this, ignore it. Its made worse by nerves (being embarrassed when pointed out). |
I fought for a year to get him help. Every alarm in my mama brain was going off that something was different here- that it was more than just a speech delay.
Eventually we were told he was suspected of having Apraxia of speech (also known as Childhood Apraxia or Developmental Apraxia).
The short, official definition for Childhood Apraxia of Speech is "a motor speech disorder. Children with CAS have problems saying sounds, syllables, and words. This is not because of muscle weakness or paralysis. The brain has problems planning to move the body parts (e.g., lips, jaw, tongue) needed for speech."
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| So what does that really mean? |
Like I said, that is the short and official definition.
For us, Apraxia meant Marshall being called "dummy", by a child who couldn't have been any older than six, at the playground because he couldn't respond with his name and could only grunt- resulting in silent tears and trying to hide his embarrassment. It meant him having daily behaviors, and us being watched and judged by others assuming these were tantrums and we were bad parents for not spanking him to shut him up. It meant begging our pediatrician for six months for help. It meant Children's Mercy doing a full work up only to say "He definitely needs help...but we can't help you" because he isn't "disabled enough" due to his high ranking cognitive ability- despite his verbal abilities ranking at that of a 13 month old (and then being charged $800 because insurance doesn't cover it). It meant explaining to people that he is intelligent, can understand all that is being said, he just can't communicate back; only to be met with confusion, blank stares, and sarcastic "oh sure, all kids are geniuses". It meant asking "please just say that again" to your son as he so carefully tries to form words with desperation in his eyes- only for sadness to flood over him, realizing his own mother & father can't understand him. It means advocating fiercely, like you never knew before. It means literally crying to a case worker, begging that the state help him since he's been turned away from the private sector. It means getting lucky with an amazing speech language pathologist who went home after her initial test and wrote pages to the state explaining why Marshall can't fall through the cracks one more time. It means hearing him described as a mute and trying not to have an outburst at the jerk who coldly labeled your child who can so beautifully express himself in other forms. It means getting turned down for play dates because they're "wanting a peer that is more at their level". It means hiding in the bathroom during the fifth behavior of the day to cry and give yourself a pep talk on patience and support. It means, once your child becomes very good at America Sign Language (ASL) he refuses to sign any longer because yet another person referred to it as "baby sign" making him self-conscious since he knows he's not a baby. It means advocating LOUDLY for the silent. It means iep meetings with the school district. It means filling out paperwork acknowledging that they can so simply label your beautiful boy as a "disabled student". It means being fearful of who you can trust to leave him with because everyone knows he can't say what happens around him or to him- or who will have the patience and understanding for him. It means being irritated when other parents complain they're child won't "shut up" when you would kill to hear what's on your own child's mind. It means wearing a fake smile when someone says "one day he will wake up and be totally normal" knowing they mean well, but your son isn't 'abnormal' now and saying he'll wake up one day 'fixed' totally disregards all of his hard work (and he works SO hard). It means making short PSA videos on Instagram to raise awareness to particular facets of Apraxia. It means correcting people when they laugh as your son desperately tries to form words, sometimes resulting in 'groping' (the lips moving to one side of the face like a stroke patient). It means sometimes not knowing which 'community' you fit into, since he is considered 'not really handicapped' by some in the special needs community and 'not neurotypical' in the mainstream community. It means having a pediatrician who has been practicing medicine for thirty-two years say "what's that?" when you say apraxia. It means having your son want to stop trick or treating because he's heard "no candy until you say 'trick-or-treat'" for the umpteenth time. It means hearing "he could have something worse" which is totally true and I'm so thankful for his health and cognitive ability- but in the same breath it is dismissive and brings an air of guilt. It means so much more than I can properly list here.
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But none of this compares to what apraxia means to the child suffering in silence. Imagine that you could understand everything said to you, see people younger than you easily speak words they don't even know the meaning of, and despite your best efforts not a person in the world understood you? To be locked, alone, in a world of silence. The frustration, self-consciousness, and heartbreak they suffer is easy to see. They understand the cold words spoken, they understand that some underestimate them or consider them different.
CASANA helps fund much needed research, raise awareness, help children get Speech Language Services, give tablets to children with severe cases so they can communicate, fund training to speech language pathologists because painfully few specialize in- or have proper training dealing with Apraxia. That is why we picked this charity and champion it all year long- not just these short 25 Days or just on #GivingTuesday.
Because of CASANA, Apraxia doesn't have to mean the daily battles I listed above. Kids can get the help and tools they need and parents can get the support and resources that they need. Because of speech therapy, Marshall's vocabulary has exploded and behaviors have drastically declined. His confidence is slowly building and his very hard work is paying off. We still have a ways to go, but we have hope and a team now. That is something every family with apraxia needs and deserves.
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| Because he deserves for his voice to be heard |
This cause really does mean the world to us. It would be so meaningful if you would help us with our mission to give every child a voice. The simplest and easiest way to make sure there are funds going to CASANA is to make the switch from 'regular' Amazon to Amazon Smile (https://smile.amazon.com) and select CASANA as your charity of choice. Amazon Smile has all the same products, at all the same prices, as regular Amazon- BUT Amazon will donate a small percentage of your purchase to CASANA. Spread the word, it is such an easy switch and costs you no money to help these children.
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| Be a hero |
You can also donate directly to CASANA here or make apraxia related purchases to raise money and awareness at the same time here or here. I even spotted a pretty sweet ornament! If you donate to CASANA using any of the various forms I just listed (or find other legitimate ways) please email us at dingmanholidays@gmail.com! We would love to hear from you- and if you take a screenshot of your Amazon purchase verification, donation directly to CASANA, etc feel free to give us your mailing address and we will send you a thank you card made with care from Marshall himself! If snail mail isn't your thing, no worries as we can also send you a digital copy of a picture just for you.
We have been and continue to try to do our part constantly, for CASANA, on behalf of our son. Please join us in our mission; because every child deserves a voice.
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