Thursday, May 01, 2008

More About Allison

There is something about Allison I have never mentioned here. I just felt like it was too personal and wanted to protect Allison's privacy. But now I feel like maybe it's not so personal, and I would love to connect with other bloggers in similar situations. I hope that maybe I can encourage someone when they need it, and someone can encourage me when I need it. :-) I would also love to be able to talk about Allison's accomplishments here. So here goes:

Allison has a severe speech delay. She sees a speech therapist every other week, and on the opposite weeks she sees an occupational therapist. The latter is for some sensory issues and fine motor delays that she originally had. She has almost fully "recovered" from those delays now, but she is still behind in many ways, so she still sees the OT. Her therapists have mentioned the possibility that she has verbal apraxia but she is too young to be diagnosed yet. (Some children her age can be diagnosed already, but due to various reasons it is too soon to say Allison has this.)

I wanted to discuss "what not to say" when talking to someone whose child has a disability. If you have said any of these things to me, I am not upset with you. :-) I'm sure I have made MANY "open mouth, insert foot" comments to people going through various issues. When you've never gone through something yourself, sometimes it's hard to know what to say and what not to say.

When I tell someone that Allison has a speech delay, the most common response is:

"Oh, my (son/daughter, niece/nephew, neighbor, friend's child) didn't say a word until she was 3 and then one day she just started talking in complete sentences! Don't worry, ALLISON WILL BE FINE!"

Especially if I just shared that I was discouraged, that response is *not* helpful. First of all, it is dismissive of my feelings at the time. Second, just because said child eventually talked, that doesn't mean that my child will. Or she may, she may be fine in the end, but it may takes years of therapy to get to that point. Just please don't tell me stories of children who were "fine" in the end. It may seem like it would be encouraging, but it's really not, because again there is no guarantee my child will end up the same as the child you are talking about. Not every child with speech issues has a speech "delay". Sometimes, as possibly in Allison's case, they have a speech "disorder" and it's not a simple "fix" or not just a matter of time.

I'm not sure how I feel about this next one. I can't count how many times people have said to me, again "my son/daughter, niece/nephew, etc." wasn't talking by age 3 and someone asked me, "well have you had his/her hearing checked? My son/daughter, etc. wasn't talking and we finally had his/her hearing checked and lo and behold, he/she couldn't hear! They cleaned out her ears and now he/she talks great!" I'm sure there are many people whom it would help to bring this up, but I think *usually* if someone has been dealing with a problem for any length of time, they will have researched that subject to death and there's not much new information you can tell them. So anyway, YES, we had Allison's hearing checked shortly after she started therapy and her hearing is fine.

Another thing that drives me crazy, is when people say "Well Lindsey talks so much, she probably just does all the talking for Allison." That is just not the case here.

Or, "well she didn't hear any English for her first year of life, that's probably why she isn't talking". Lindsey didn't hear any English for her first year of life either and she had no speech issues. She started talking within a month of coming home. There are also many children adopted from China who were over a year at adoption who talk just fine. This may have something to do with a child not talking at first, but we've been home with Allison now for over a year and a half. This is not the problem.


All that said, Allison is making GREAT progress lately! She is up to about 25+ words and seems to learn a new word and/or sign almost every other day. Now I know for a typical 2.5 year old, 25 words is not much. Both Ben and Lindsey were talking in complete and sophisticated sentences at Allison's age. But considering that at Allison's 6 month follow-up meeting in January she had only 1 or 2 words, this is big. Her receptive speech gets better and better all the time too. When she first started speech therapy late last summer, she really didn't have a clue about much of what you told her or asked her to do. Now she responds properly and quickly to most things you ask of her.

Here are some of Allison's words: Mommy, Daddy, more, off, read, open, water, ball, bye, please, hi, oww, yes, eyes, potty, walk, brush, juice, baby, wash, push, shoes (she says "eh-shoe", sounds like a sneeze!), socks, uh-oh, and eat. And some of the signs she knows: more, eat, open, milk, brush, potty, drink, shoe, book, read, please, shoes, bike.

One thing about Allison's speech delay, is that every new word is such a triumph! I get so excited about every new development. It's very rewarding. Allison has such a sweet personality (although she sure can stomp her foot when she's mad, it's actually pretty comical!). She's a very happy little girl and cute as a button. She makes me laugh, and drives me nuts. LOL She is SO into everything, gets into the same things over and over and over and over until you think it's never going to end (is it???). She's been such a joy and I am very thankful she's my daughter!


Ma said...

Well, that was good to read. I think we are about 1/2 step behind you with our daughter. She turns two this month and says maybe three words. It's all very discouraging. And whenever we get her to try to repeat words, it's all very sloppy on her part, like she's not getting it at all.

And her hearing? Ha ha ha. If she hears a snack bag crunching, she'll come running. :)

Magi said...

Hi Eileen,

My niece is also speech delayed. They suspect she may have verbal apraxia, too. She was just adopted in November, but she's almost 4 and was delayed in Chinese as well. I'm not sure if her foster parents spoke Mandarin or Cantonese.

Her therapists are hopeful that she will be able to work through the issues. We're the ones who have to learn that she's learning to speak in a different way.

Good luck!

Stephanie said...

Thank you so much for sharing. My friend's daughter also has Apraxia, so I know a little about it. I am going to send her an e-mail with a link to this post.

KiT said...

Delurking to say I get it. B is not so much speech delayed (any more), but articulation is still an issue. People say silly things, like they assume you haven't noticed. I am glad Allison is getting speech and ot and that it is helping her. Any interest in "Signing Time?" B loved it and learned lots of signs that way. ASL was a great tool for her until her expressive language caught up with receptive.

Mom of 5 said...

Ok -we hear you completely !!
Mia says very few words and the words she says don't sound correct.
We have her IEP in a few weeks.
I am going to mention this...

Anonymous said...

Hi Eileen
My friend Stephanie sent me a link to your blog. My daughter, almost 6, has been treated for verbal apraxia for several years. The link above is for a wonderful site that provides a wealth of information about apraxia. The group also has a listserv where people can email questions, share ideas, etc. It sounds like your little one is making some great progress in the last few months - best wishes!

Michelle said...


Allison is just so darned cute!! I am so happy to hear that she is making progress..I am sure that is so exciting for all of you!

Beth said...

Hi Eileen. I bet this was a tough post for you to write. It sounds to me as if you have the whole thing under control and you're doing exactly everything you should be doing. You're a wonderful Mom and God knew that you were absolutely the right person to walk with this perfect little girl through this journey.

Thinking of you!!!! - Beth

P.S. I know you home-school, but I was wondering if you've checked into some possible 'birth-3' programs. I don't know what is available in your area, but there might be another resource available through your district.

Mom of 5 said...

Eileen-jot me an e-mail. Your e-mail keeps bouncing back and I have your #'s.

Alyson & Ford said...

She's a beautiful child.
I don't have advice. Sounds like you are doing everything right!

Alyson LID 01/27/06

Val said...

I'm so glad you are getting milestones to celebrate! I hope with therapy she'll become more able to communicate and less frustrated in not being able to. I found Ava acted out so much more when she was struggling with speech (she still does to some degree). I'm certain Sophie's speech problems came from not being spoken to for nine mos. She slowly began to communicate (from near silence, no babbling) after several years.

Looking forward to celebrating more with you. The girls are just beautiful...can't believe how they've grown!!! Seems like just yesterday we were waiting for The Call (#1).

Oh, and glad that Screen Cleaner worked for you. I thought it was hysterical...ugliest dog in the world. :o)

Monica said...

One of my friends ( )
has a daughter with speech issues that she didn't know about until she was a bit older. She has apraxia I believe it is. Her daughter, Erin Joy, is either 3 or 4, I can't remember which. She has issues with pronunciation and drooling. You might want to email Stacey (the blog owner) and talk to her.

Big sis to Reese

Leslie said...

Had to comment on this post. We are waiting to bring home our little girl from Kunming. I found your blog over on the yunnan yahoo group. Our little girl is 2 1/2 as well! Anyway, she has an unrepaired CL and I was shocked at first at what people would say when I showed them her picture. Things like, "Oh, THAT can be fixed once you get her here." Or "My friend's son had that too and he looks so good now." Why do people say things like that?! I am so sorry you have been discouraged by others. I know too that people "mean well" but it still hurts. I posted a similar post on our website (in May too!). I got some mixed reactions from a few close family members, but I just thought it was time to speak out. Our little girl has some other needs that will need to be addressed first, so I hope people take her feelings into consideration. But I have heard that is not always the case either!