Record Breaker...

THE FIRST TOOTH!

Meghan was 13 months.  Evan was closer to normal at 9 months.  Esther is doing everything much faster than the two of them.  Remember how she rolled at 11 weeks (and it was NOT a fluke)?  I'm a little frightened to think what will come next as my baby is growing up.

(And no, that is not a new picture.  I just really like it.)

Amazing....Speech Update (and Speech History)

This is a bit emotional...filled with gratitude and amazement at what God has done.

In February of 2009 (at age 27 months) Meghan was diagnosed (not just suspected) with verbal dyspraxia (also know as apraxia).  You can read my original post here, if you like.  Her therapist suspected, and after reading about it (which was incredibly hard) and clearly seeing the signs for myself, I scheduled a formal evaluation through AI DuPont Children's Hospital.  So it was over a year ago that she was diagnosed with it.

In short, apraxia is a neurological disorder that affects communication (and often movement).  It is not outgrown, nor is it a muscle issue.  Instead, the brain is not able to tell the muscles what to do.  You can read more about dyspraxia/apraxia at www.apraxia-kids.org, if you like.

I knew something was different about Meghan as a baby.  She didn't babble.  Not even at age 1.  She did not have throaty sounds...her only sound was mmm-mmm when she was eating.  (She still does this a lot of the time at 3 1/2.)  Though she giggled and laughed, that and crying were her big ways to communicate.  Most people tried to encourage me/us telling us about how children learn to walk when they are one and talk when they are two or how lots of kids are late talkers (like myself), and then start talking in sentences.  Many thought we were crazy to teach her sign language to facilitate communication since she would use signs but not words.  Some thought we just didn't try.

So when Meghan was 27 months old, she was diagnosed with verbal dyspraxia along with a few other things.    When I was researching about apraxia I cried-after just five minutes of reading.  At its worst it's horrible, and doesn't only impact speech.  Often children with it have a very difficult time in the classroom, especially with math and reading.  I'm certain my emotions were no different than any other parent who has a special needs child...mild or severe.  With Meghan's diagnosis, I was able to request additional therapy for Meghan at home.  She went from once a week therapy to twice a week with an SLP and a once a week teacher visit.  Both the SLP and teacher were excellent, and I truly believe what they did with her (and taught my husband and I to do) made the biggest difference.  We understood we were our child's advocate and what we did with her was incredibly important.

By age three, Meghan still could not say a nursery rhyme or sing happy birthday, but her progress was remarkable.  Her vocabulary always growing.  She was attempting words on her own, unprompted!  Her birthday brought sad changes though.  We said goodbye to her teacher and therapist which was really hard.

The day after her birthday we sent her to a special needs preschool with a speech and language classroom through the Intermediate Unit.  Oh, and our little girl rode a school bus, complete with car seats.  Our social little girl blossomed at school where she was not only in a classroom with an SLP for a teacher, but she was also working with another SLP three times a week.

Recently, the teacher and SLP let us know that Meghan would benefit from being in a regular classroom next year for both speech and academic reasons.  (She is at the top of her class with both.)  But this week I spent some time talking to her SLP at school.

From her evaluations, Meghan is speaking age appropriately!  Though many three year olds sound like little adults when they speak, it is not actually expected that a three year old would have all, or even most, of the sounds used when speaking.  Not only that, but the SLP has also said that she no longer sees signs of apraxia.  

What does this mean?  In my opinion, the fight is not over, but WOW!  Meghan has overcome the apraxia for now.  She will continue to need therapy, likely for many years.  However, her speech doesn't need to define her.  (I know that this is more my issue than hers!)  When she goes to regular preschool in the fall, she will continue with therapy.  I don't know if it will need to be intensive, like in the past, but it will continue.  Obviously, her apraxia is fairly mild, but it still excites me to think where she is no compared to where she has come from!

Meghan continues to be difficult to understand, especially with multi-syllable words.  But we do understand a lot.  Her vocabulary is huge.  She retains information amazingly well.  As her SLP said, she learns really well (better than others her age) from her experiences and  environment (watching others, books, television), and does not need to be instructed in many things to understand them.

Derek and I have prayed for her speech, just like we prayed about her SVT, and Evan's seizures.  To God be the glory!  We know that Meghan's hard work through early (and intensive) intervention and people that care have been used by God to help her in this journey...and He will help us through the next part, too!

(Please note that I spoke mostly using the words I/me in this post because I was speaking from my perspective and my emotions.  Derek has been extremely involved in all of this, too.  Though it was not as natural for him at first, he has learned to facilitate speech in both of our children that would please any SLP.)

Speech Update

Meghan has made such incredible progress in her speech. Amazingly, her vocabulary is now a decent size (though not easily understood without context clues). Meghan even talks throughout the day without prompting, though she doesn't string words together to form sentences much.

If I think about it, probably the phrase I hear the most is, "No no, Evie." If Evan touches the wrong toy, talks at all, fusses, or cries she tells him no. Meghan is happy to give toys to Evan...but only the "baby" toys...not toys she likes to use!

We really struggle to understand her. The other day she woke up warm from a nap. She kept saying, "bath" but I had no idea what she wanted for over a minute. On another occasion, we were having dinner. Set out for Meghan was a small bowl of macaroni and cheese to eat when her green beans were gone. She ate the beans. She told us, "cheese, cheese" but Derek didn't understand her though she repeated it over and over. (In this particular instance I did know what she was saying.) Several times a day she communicates with us, and we just can't understand her. I have an advantage with being with her all day and all night, but it's still hard.

At this point I thought we might be working on articulation in therapy, but her SLP has explained to me that more damage could be done by trying to do this too early. She expects that when Meghan is three years old and with a new therapist through the Intermediate Unit (instead of Early Intervention) they will begin to work on clarity of speech.

Speaking of turning three, we still have hope that she will be in the developmental preschool. It's a scared hope for me. I do think that would be best for her, but it will be hard for all of us. Very hard. I guess I really didn't expect for her to need to be there four days a week, but if they recommend it, that is what is most effective. At least it isn't all day. Of course we don't know if the IU will even think she needs to be there, and it is totally up to them. Honestly, I just try not to think about it. I can't plan for it because we just don't know. That's the hardest part (for now), I guess.

If Meghan does not go to the developmental preschool, we will keep her at home. :)

Meghan is 2 1/2. We sing and read daily. She knows nursery rhymes. She can't say them, but if I say them, she'll fill in the blank for me. Here is an example. (All capitals are what she says when I pause.)

Twinkle, twinkle little STAR. How I wonder what you ARE. Up above the world so HIGH. Like a diamond in the SKY. Twinkle, twinkle little STAR. How I wonder what you ARE.

We can do something similar with a couple of books, especially nursery rhyme books and a few others that are repetitive. It's a start. Some day she'll sing with us! (And I can guarantee she'll sound better than me!)

She's also counting to ten (not consistently) which is an academic and speech accomplishment. She still likes to skip one! Oh well.

We're thankful for the progress. Thank you for caring!

A Size Comparison and Counting

So here is a picture of the two from mid November. Evan was a month old. He was still curled up most of the time, it seemed. Somehow Meghan sat still for a picture.

Below is a picture of them this week. I barely was able to capture them side by side. Evan quickly rolled over and turned at the same time. The backside of Meghan was all she was willing to show. I know the pictures aren't great for comparing, but you can still see how big Evan has grown. Meghan is getting to be taller, too, though I'm sure she'll always be short.

You might remember how special it was when Meghan first called me Mommy. Well, I am sad to say I have become Mom. No more Mommy...or at least not as often. The good news is she is using Mom to address me. Most often it's in the form of "Mom, help." If she were to say, "Mommy, help" that would be like a three word sentence in the speech world because it is three syllables.

Some things are frustrating, even in the midst of progress. For example earlier this week we were finishing up breakfast. Meghan said what sounded like, "red dog." So I asked her if she wanted to read Clifford, The Big Red Dog books. It was a good guess. She really likes the Clifford books we get from the library. But I was WAY off. It took us a long time to figure it out.

Meghan wanted to use Play-Doh. She can say play. She can say dough. But now that she is trying to put more and more word combinations together, they sometimes get fuzzy. We work on it and work on it, and we are making progress.

FYI: Meghan's two most spoken sentences are "Read book." and "Mom, help/Help, Mom." I love that Meghan has a passion for books already.

Many parents may not understand why this would be "post-worthy" material, but with apraxia this is: Meghan can count! She will count 1,2,3 without help. She tries to count to ten, but doesn't quite have all the numbers yet. Her counting is slow. Some numbers are harder to understand than others, but she is doing it! It thrills me!

Reading Aloud!

Meghan said to me, "Read book."!!! Then SHE proceeded to read this book to me! It has a simple picture on each page. Some of the words/pictures are girl, house, ball, sun, and others. She attempted each word on her own. Some were pronounced pretty well. Others were not. But the fact that she initiated reading a book is wonderful.

Did you notice that Meghan put two words together? "Read book" is a sentence! She has said this sentence twice now on two different days! We are very pleased. She certainly is overcoming the apraxia!

Oral Dyspraxia

I already shared that Meghan has verbal dyspraxia. Friday she had an occupational therapy (OT) consultation. Though very mild, she seems to have oral dyspraxia/apraxia too. Verbal has to do with not being able to form words. Oral apraxia is more about Meghan not having a sense of where her mouth is and being able to manipulate it to do what she wants (blow, touch nose with tongue). Her brain can tell her mouth to say something or move, but there is an obstruction making this difficult. There is no muscle weakness.

Some orally apraxic children are more obvious. Meghan is not; she smiles and eats decently. She drinks from straws and is not clumsy.

This is also showing as a sensory issue. She over-stuffs her mouth because she can't feel a small amount of food in it. She also needs horse-play to stimulate her. We thought it was just her personality. in part, the OT will be to prepare her for preschool since she is not a sit and listen child.

The OT that came to our home asked a question that had never been asked before. She asked if Meghan had been intubated when she was in Cardiac ICU. Yes, she was (at 17 days of age). She considered that the trauma from the intubation could possibly have led to these sensory issues related to her mouth which are related to the speech issues. Interesting. Of course we can't know the orgins of this though, but with Meghan's heart problems, seizures, and medications it is easy to wonder.

In addition to the therapy she already receives, she will also have OT, but only every two weeks. The therapist already gave us several suggestions to stimulate Meghan. One of them is having her use (play with) an electric toothbrush. (I just bought one a couple weeks ago after my dentist recommended it for me. I like it; Derek is not impressed. Since we have replacement heads for it, it is easy for all of us to share.) She's been using that each day. She likes it in her mouth and on her fingers. We have also been using lotions daily, especially on her hands.

As I said, the oral apraxia is very mild. I suspect she will need OT for only a short time. The verbal apraxia is probably considered moderate, even with all of the progress she has made in the past two weeks. We know the verbal apraxia road will be long, but we're here to support Meghan.

Dx: Dyspraxia

Earlier this month, Meghan was diagnosed with a motor speech disorder called verbal dyspraxia. It's why she didn't babble until she was more than 1 1/2 years of age and why she is struggling with language in so many ways. She has great communication skills, just not verbally. Dyspraxia is often called apraxia. Though they are actually different, the problem is the same. Though Meghan may want to talk, she has to learn how to say each sound because her brain cannot tell her mouth how to move correctly to form the sound. Or at least that is my little summary.

If you want to understand more about dyspraxia, check out the Apraxia-Kids and Can We Talk sites I have listed.

Meghan had her speech and hearing evaluated last spring. We have had her hearing tested twice, and will have it tested once more. She really does understand everything we say, but they have suggested for us to return again because it wasn't conclusive. Last spring, when Meghan was 15 months old, her one word was /mah/. She used it mostly for more or to tell us she was frustrated or wanted something. It was not for Mom.

Although she was borderline in need of speech at that initial speech eval, they knew I was a former teacher and that I was working with her already. So they gave us some tips and suggested calling if we felt the need and they would check in with us after three months. Three months later she had not progressed, so she began speech therapy. We were only in Maryland's program for about 5-6 weeks because of our move. Before we moved, I had lined up an eval here in PA. We are very pleased with her therapist and have seen Meghan make great strides, especially recently.

We suspected apraxia in December and scheduled a private speech eval. We did it in hopes of getting Meghan more services. She now has speech therapy twice a week and an early childhood/special educator comes in once a week. (Of course they are all scheduled when I would prefer to be making dinner.) Thankfully they are all in our home (until Meghan turns three).

The problem with apraxia is that it is not outgrown. It is overcome with intense therapy though. So we have a long road ahead of us. Please keep us in your prayers as we advocate for Meghan and really try to work with her. We know God has great plans for her!