It Will Come — 5 Minutes for Special Needs

It Will Come

by Debbie



                               

“It will come.”  Three simple words meant as encouragement.  Meant to give hope.

They don’t.

In fact, often they are received as a dismissal.  As a means of telling me it’s not a big deal.  Because I know this phrase is not meant in the way I perceive it, I simply smile and say, “I hope you’re right.”

What will come?  Speech.  Peanut is 6 years old and is still non-verbal.  I don’t mean she has a limited vocabulary.  I mean she is non-verbal.  She say’s “No.” clear as day.  She says a version of “Yes.”  The rest is grunts, babbling.

These words come from other parents of children with Down syndrome.  Other parents who perceive they have been down the same road.  Maybe they have, I don’t really know.  But often, I doubt it. Like the parent who told the story of how her son simply had not been given the chance until she was busy on the phone and he was forced to use his words.  He was 5.  Now he’s in college.  Somehow, I don’t think she really understands my position.

After “It will come.”  I get the next dreaded five words: “Have you tried sign language?”  Really?  I have a 6 year old daughter with speech issues and you think I have never heard of sign language?  Where the first three words frustrate me, these five little words enrage me.  It takes much more to remain polite.  In short, yes, we have explored sign language, but that is a post for next week.

Sometimes I feel that Peanut’s lack of speech is dismissed as not a real disability.  Granted, she is our third child and it’s easy to talk for her or just know what she needs and not make her use her words.  But it’s more than not giving or the chance to use her words.  It’s more than just Down syndrome that is delaying her speech.  In addition to the complications that come with having Down syndrome, she has verbal speech apraxia that limits her ability to form words.  She struggles to make the vowel/consonant or consonant/vowel combination much less form a full word.

I hope people are right.  I hope one day the light will come on and one day her brain and her mouth will work together and she will be able to get out the words I know she longs to say.  I hope we will one day have conversations like I hear her peers having with their parents and friends.

Until that day, I’ll have to hold on to the hope that “It will come.”

Email Author    |    Website About Debbie

Over the years I've worn many hats, but the hat of mother is one of my most special. I am not a perfect mother. I make many mistakes, but I have my share of triumphs also. When our youngest daughter came along, she came with a little something extra: Down syndrome. That's when the hat of advocator was added to my hat box. It a hat I try to honor every day and one I like to share with others to let them know they are not alone.

View all articles by


                               

This post may contain affiliate links. When you use them, you support this site. Thank you!
See our Disclosure Policy for details.
1 Laurie Wallin March 10, 2011 at 6:41 pm

I am right there with you today. Some days I spit at hope, others I grab on with everything I have. We’ve been in a 6 year waiting time to find the right therapies with one of my girls and I know what you mean… so glad you expressed this in your post. You’ve got a friend in the waiting. 🙂

2 Debbie March 10, 2011 at 10:31 pm

Finding what works can be so difficult. What seems to work one day just doesn’t the next. Good luck on your quest, and glad to have another friend who understands what it’s like for us moms.

3 Lisa March 10, 2011 at 7:33 pm

as a special ed teacher, currently working with mostly non verbal preschoolers, I hope your child has been given an individual assistive technology assessment and a voice output communication device she can use or is at least using pictures to communicate her wants and needs to others.
Lisa

4 Debbie March 10, 2011 at 10:28 pm

Yes, we are exploring both. The school provided an AAC that we have not been thrilled with but they refused to explore other options until she proved she could use it. We have just recently gotten our way and are using our own iPod Touch with the Voice4U program but it’s been a little slow in getting implemented. We used PECS in the past, but are concentrating on the AAC system now.

5 Elizabeth March 10, 2011 at 10:25 pm

I know exactly how you feel. My son is 2 and is totally non verbal, no words at all, just babbles. It does get hard to remain polite when people, including your own mother, says it will come when you’re scared it won’t because others with his same diagnosis don’t talk at all. We got an iPad for him in hopes he would be able to use it to communicate, not yet but I will keep hoping.

6 Debbie March 10, 2011 at 10:29 pm

Sometimes you just want an honest answer from someone of what you can expect. Not that I want to put limits on my daughter, but I want to be realistic also! I hope he figures out the iPad soon. It can be very helpful.

7 Beth March 11, 2011 at 8:39 am

Hi Debbie,

Hugs to you.

Although I have not had the same issues with speech with my daughter with DS that you do, it’s the potty training that gets to me. She’s now 8 and we’re still at it. And when I vent or explain what’s up with the potty training, people ask me if I’ve tried xyz approach. Really, I’ve been potty training for over 5 years, don’t ya think I’ve thought of that? grrrrrrrrr.

Thanks for your very honest post. I really appreciate parents who admit to their struggles (cause a lot of parents don’t).

Beth

8 Debbie March 13, 2011 at 8:40 am

Beth – Ugh. Potty training! Don’t get me started! 🙂 That’s another area we continue to struggle in.

9 Jo March 11, 2011 at 9:31 am

Thanks for sharing. The words people use are meant to help but they don’t. At 12 months by son had significant delays in all areas and I was scared what all this meant.
He made great progress with specialized therapy for which I am hugely grateful for. Yet I can relate to how you feel because in those early days a friend(at the time but no longer) gave him a baby walker for his birthday. She said “I thought that it would help bring him on……” At the time I wasn’t even sure he would walk so it hit me hard.
I hope you are able to find things that help you and your daughter.
Peace

10 Debbie March 13, 2011 at 8:39 am

Jo – that is the important thing to try to remember when we get frustrated with others. They truly are just trying to help, even if they really aren’t! I’m glad your son has made a lot of progress. 🙂

11 Janet March 11, 2011 at 10:33 am

I think speech is a hard one for “normal” people to grasp – speech comes so easily for them, more so than walking or running or even eating, that they don’t even think about it. It’s the first thing they expect from kids of a certain age, and when they don’t get it….clearly there’s some failing somewhere, because everyone talks, you know?

My little guy is non-verbal too – he says go, but not in context, “oh” sometimes for open and “ar” sometimes for car, he will do a dozen or so signs…but clearly he understands every word (and pushing 200 signs) – he’ll follow directions given either way. But still….now that we’re not hauling around a ventilator, the fact that he doesn’t talk like other almost-3-year-olds is the thing that people comment on and assume is the most horrible part of our lives.

12 Debbie March 13, 2011 at 8:37 am

Janet – The funny thing is we take it for granted but speech is a very complex thing to learn and really hard to teach because you can’t show how your tongue is making all those changes inside your mouth.

13 Lorinda March 12, 2011 at 7:03 am

Hi Debbie, Funny, I HAVE been in the same boat, and in a lot of ways, still am. My son will be 7 next month, has DS, and has an apraxia of speech. We used a dynavox for awhile, but then school decided it was better to “put the importance on his words” rather than pushing buttons. We had some success, because he did want to be understood by his peers. We also have been in PROMPT therapy in addition to traditional speech. I’m not sure where you live, but this focuses on tackling the apraxia, and is a “hands on” approach to the motor activity of the mouth, tongue, throat in getting those words out. It has helped. He has some words that sound fantastic, but still has a lot of grunts and utterances that nobody understands. Just know you’re not alone, and there are plenty of Moms out there doing the same “I hope so” and polite smile routine that you are!

14 Debbie March 13, 2011 at 8:36 am

Lorinda – thank you so much for your information! We are currently using a AAC system and just switched to a program on her iPod touch because the system the school supplied was so big and bulky. It really isn’t but for Peanut it is. I’ll have to look into PROMPT therapy. I believe they are currently using the Kaufman method in therapy. It is nice to know I am not alone and to hear from someone that truly understands.

15 Chris March 17, 2011 at 8:41 am

Definitely look into PROMPT!! We are not dealing with apraxia, but John’s SLP does use PROMPT to get him to say certain sounds. The physical prompt really seems to help with the motor planning (how the mouth should form, where the tonge should be.) Actually, its pretty funny, he sometimes does the prompt on himself. Eventually, when he is proficient with the sound, the prompt goes away. Loved this post! Sharing the struggles at times can be more helpful (to yourself and others) times than always being the cheerleader.

16 Debbie March 17, 2011 at 7:40 pm

Chris – thanks for the reminder. I really have to look into this!

17 KDL March 17, 2011 at 7:13 pm

This happens in lots of areas. For us it is social skills. When my 7 year old still hasn’t figured out how to share and take turns as well as her 3 year old siblings and people try to make me feel better by saying their kid does/did the same thing it is hard to even know how to begin to tell them how confusing and hurtful their comments are. It’s just not the same…by now she should be figuring out much more complicated social dynamics than how to wait your turn, and that’s the part they don’t get. It’s not so much where she’s stuck at, but as a parent watching their chronological age outpace their developmental age and not knowing what, if anything, will help them catch up or at least gain enough skill to be independent.

18 Debbie March 17, 2011 at 7:42 pm

I know what you mean. Peanut is our youngest, so it’s not as obvious for us, but there are other kids on the street or cousins who are younger and you see it when she plays with them.

Comments on this entry are closed.

Previous post:

Next post: