Imagine that you want to invite a new friend to a party. You’re a little bit nervous, and you have trouble getting the words out. Your mouth doesn’t want to work at all. You stutter, you mumble, your speech is “bumpy” and halting, your voice is too loud or too soft, and you leave endings off of words all together. The more self-conscious you feel, the harder it becomes. After what feels like a painfully long time, you finally get out your question… and are then asked to repeat it because she didn’t understand what you said.
Or imagine that you’re asked to fill out a simple form, asking for basic information such as name, phone number, and address. You’re a teenager and you’ve been reading and writing for a decade. You know how to make a 5, or an 8, or spell McGrail, but a connection is lost between your brain and your fingers, and writing is difficult and slow… your words too big for the box, and your penmanship hard to decipher.
Or think about shopping for shoes. You’re faced with pair after pair with laces, so many options, so many choices… and you look at them all, try on several pairs, but ultimately end up choosing one of just a few that slip-on. Because even though you CAN tie, the process is arduous, and you – like everyone else – want to be able to just toss on your shoes and go.
Now imagine that because of all of the above, people make automatic assumptions about your intelligence, about your future, and about your other abilities.
In the simplest terms, it’s a motor-planning disorder. Your brain correctly tells your mouth (or your hands, or any other part of your body) what to do, but there is a breakdown in the motor planning necessary to complete the action, making said action difficult or in some cases impossible. Apraxia behaves differently in each person, and can affect any motor system. Some people with apraxia may have trouble with the large motor coordination necessary to ride a bike for example, but not struggle at all with handwriting. The examples I gave above are specific areas that Spencer (16 at the time of this writing) finds most difficult, but we’ve been told that he likely has other, more subtle apraxias as well.
I am so thankful that I’m able to unschool all my kids, but particularly Spencer. I can’t think of any other type of education, or life, that would be more respectful and uniquely individual to his needs while still keeping his amazing self-confidence and tenacity intact. Apraxia doesn’t define him, and he knows that.
Still, it’s frustrating both for him as an individual and for us as his parents to deal with something that is in most cases not even on anyone’s radar, and poorly understood when it is.
What can you do to help?
Next month, our entire family of six is participating in a walk to raise money and awareness for this cause that is so deeply personal and important to us all. Any contribution you could make (even if it just means passing on the link to share with others) would be so appreciated.
Click here to view our fundraising page. We thank you, and Spencer thanks you.
*Please note that this post was written and posted with Spencer’s approval and blessing, because he wants to get the word out. I wouldn’t have posted it otherwise.*