Thursday, May 15, 2014

When Something is "Wrong" With Your Child

Meet Miles.
He just turned 2.
Dream cake made by Grandma Borden!
He loves bouncy balls....(Actually, that's a dramatic UNDERSTATEMENT.) 

There is no word to adequately describe the way he obsesses over sports equipment. 
"Ball" was his first word. Ball is still his best word. It's also his most used, and the most universally understood portion of his vernacular.

And yes, sometimes he needs a large bouncy ball in his crib so he can fall asleep peacefully and wake up happy - like this one that I found him curled up next to just yesterday.


Would you look at this kid?
He has more cowlicks than anyone should ever have to deal with, but they force his hair into wild hair-do's that make me fall in love with him every day.

Miles is so cute. 

I don't know why, but for whatever reason, he deals with a speech delay, as previously discussed in this post & mentioned in that post.   After working with him, he caught up with his age group, and didn't need further services for the time being...or so we thought.

Amid the process of coercing Miles to speak, we introduced him to Signing Time and fell in love with it!  It's saved our lives, because we've found that Miles is a visual learner, and I am amazed at what he understands through signs.
  • Sometimes I will say something and he will stare at me blankly.  Then I will say it and sign it, and he shows understanding IMMEDIATELY. 
  • Often, when I try to explain WHY he can't have or do something, using words doesn't always help me, so I'll use the words and the signs, and "click", he quits crying and he gets the "why" of what I told him.
  • Signing motivates him to be verbal.  Just the other day, he wanted a chip.  We tried and tried to get him to repeat after us and say chip, and he wouldn't.  I looked up the sign.  I showed him the sign and said "chip".  AFTER I signed it to him, he finally attempted to say "ip!" 
  • Sometimes Miles will be eating and his mouth is full, so he just signs what he wants to tell me.  Other times he tries to say a word with his sign, but most the time his repeated words sound like, "Eh" or "Uah"
  • He knows & uses 75-100 signs.  He can say 20 or so words that you can understand.  He makes some letter sounds pretty well, but he doesn't do blends very well.  He doesn't speak in 2 word sentences, but he can sign 2 to 3 word sentences...once in a while.

As we've been striving to pro-actively work with him, we have watched all the volumes of Signing Time over & over, we have been on so much I'm sick of it (but Miles isn't - he asks for it multiple times a day, "R?  R?" "R?").  We pray for him to keep learning and growing, we read books, we surround him with people he loves - parents, siblings, grandparents, aunts, uncles, cousins -, we have playdates with friends (including my deaf friend who helps us learn more signs...), I take him places to give him new experiences, and I let him participate in Messy Art Class.

A few months ago we took these videos of him signing - he uses what I call "baby signs". His fine motor skills aren't fully developed so sometimes the location or hand shape isn't exact, but he uses the motion & modified hand shape to do the sign. It's like "baby talk", but with your hands. I love it:

Our pediatrician recently told us at his 2 year appointment that we need to get Miles (1) a hearing test, (2) a speech therapist, and (3) back in Early Intervention.  Truth be told, about a week or two before this well-check, I had already started hunting around for a place to do hearing tests on 2 year olds, and I considered asking Early Intervention for another screening.  But when the doctor told me something was wrong...even though I already was hard to take.  I had this sudden feeling well up inside me that I've never really felt before.  I guess in some ways it was similar to the first time he was referred, in some ways it was worse because I didn't want to have to be back here again.  I nodded my head kindly and thanked him for the referrals and numbers like a good parent would do, but at the same (probably also like a good parent would feel) the Momma Bear inside of me was angry and upset someone would dare to infer something was "wrong" with my child.  I just wanted to yell - "NO HE DOESN'T NEED THIS!  HE'S PERFECT! WHAT DO YOU KNOW ANYWAY?"
I made it to the car before my angry tears slipped out of the corners of my eyes, and I drove around to sift through my feelings. 
Today we had his speech screening.  The little questionnaire turned out confirm the need for intervention more than I wanted to believe he'd need. 
The lady asked me, "How do you feel about this?" 
I cried and told her it feels like everything we've been trying so hard to do to help him just wasn't good enough.  
"No, no, no!  Don't feel that way!  No parent should ever feel that way," she reassured.  
My mom says my son wouldn't be where he is today if we hadn't been doing all these things to work with him & help him learn. When she says that, it strikes a chord in the center of my chest that gives me peace and makes me tear up at the same time, so I KNOW what she says is true.   I just need to remember that when the "it wasn't good enough" doubts and feelings come back to taunt me.
A few weeks ago, my friend, Alyssa, was at my doorstep.  She's been through similar experiences with her own little boy.  Miles looked up at her from the entry way.  I think he smiled or lifted up his eyebrows for one of his cute expressions, and she paused, and with a little intake of breath said, "Wow!  Who needs words when you've got eyes like that?"
So anyone who ever has to tell me something is "wrong" with my child can just TAKE THAT.  Miles doesn't need words anyway!
We will obviously do everything we can to give him what he needs to keep learning & growing.  And I am well aware that the doctor really is on my side & that we're both on Miles' side.  I just still feel like this is a fight, because in my heart it has caused a battle. (If I feel like this over a speech delay, I can only imagine the depth of the pangs of fears & worries that come to parents whose children face harder challenges.) 
I don't know what the results are going to be with his hearing test...I don't want him to have hearing loss...but I might be more afraid of what's next if he doesn't.  If it's not hearing related, what will that mean?  Could a speech delay affect his ability to do well in school? I don't know how many more times I might feel like I'm giving my whole heart and soul but will still feel like I'm falling short as a parent.
But what I do know is that Miles really is perfect.  Nothing is wrong.  He came to our family straight from Heaven, exactly the way God meant him to be & the Lord is still looking out for my little boy. 
And I know that the love Mitch and I have for him is enough. And in case it's not, he has been blessed with 2 brothers who adore him, 4 grandparents, and many aunts, uncles, cousins, and friends who love him, too.

This is how Miles tries to sign "I love you".  It melts my heart every time!

When it's all said and done, LOVE will always be enough.