Therapy for Childhood Apraxia of Speech

Our 3 year old was recently diagnosed with Apraxia, so we are still at the beginning of our journey–not experts. My understanding is that Apraxia is best treated with therapy sessions 3 to preferably 5 times per week. We have been using a private therapist a couple times a month, and the school system sees our daughter 3x per week (we homeschool but she does have an IEP for speech).

My daughter also has high anxiety in therapy settings, so much of the time I have been functioning as the “therapist” and her private SLP therapist has been more like a consultant, monitoring our progress and telling me what to do. She is doing better with her new therapist from the school, but we had to start out very slowly with letting her just get adjusted and play, therapist bringing gummies, or the therapist “working” with a doll while I copied her (doing with my daughter what she did with the doll), and the SLP pretending not to notice we were there.

Over time she warmed up and will work alone with her SLP now, though sometimes I still have to be involved, or one of her siblings–it is a day to day thing, depending on her mood. I spent a lot of time in the past month reading through the parent AND the Speech therapist sections on the CASANA website, and trying to utilize the ideas there with my daughter, so I am working with her more strategically at home. I directed her speech therapist there, also, and thankfully her therapist is willing to learn and open to my ideas based on my research.

We are currently using Gemiini discreet video modeling, which is $100 per month but we can use it every day to extend therapy–they have some apraxia protocols, which we are using, and I think it has been helpful (not a miracle cure but I believe it is worth it and my daughter is benefitting from it). They do offer scholarships to lower the cost.

Maggie only communicates through sign and we have started just this week requiring her to make a sound to go with her signs–she has several consonants and vowels, though only a handful of words. If she signs “more” she needs to try to vocalize “mmm” or “mo”, just to get her into the habit of making a sound, rather than be silent all day, which is more comfortable for her. It is helping, she is starting to be more spontaneous in making vocal utterances.

Update on Maggie

December 2015

December 2015

It has been over a year since I posted an update. I can only say, things have been extremely busy as a mom of 6, and I haven’t found much time to journal or blog as I would like. Still, a lot has happened and is currently happening, and I would like to have some of that recorded here, especially as we are heading into a New Year in a few days! Maybe getting back to writing on my (ahem, three!) blogs will be one of my resolutions?!

Maggie has done really well in so many ways. We celebrated her 2nd “Gotchaversary” of being an Evert in September, about a month after celebrating her 3rd birthday. She is extremely smart, very funny with a great sense of humor, and she has a generally cheerful and sweet disposition. She is extremely close to her 5 year old sister, and the first question she asks each morning when waking up is “where is sister?”

Medical update

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Playing at the park during a 24 hour EEG

Over the course of the past year Maggie has had 3 very brief partial seizures. The first was in August 2014 and was triggered by vibration. The other two were back to back in June 2015, and those were triggered by light reflecting off of water at the swimming pool. Each seizure only lasted a few seconds, and were marked by her briefly losing consciousness (the first one) or her eyes rolling back in her head (the 2nd one), but no jerking. She has had two MRIs and 3 different types of EEGs to try and determine what has caused the seizures, and whether she has Epilepsy, but all of her tests have been normal. The neurologist has been unwilling to diagnose or treat her since we have no abnormal test results so we are in a “wait and see” mode. She typically wears sunglasses now whenever she plays outside on a sunny day, just in case.

June 2015 at Telfair Museum in Savannah

June 2015 at Telfair Museum in Savannah

Speech

Maggie has really struggled to learn to speak. At first we attributed this to the fact that she wasn’t hearing well when we adopted her, due to multiple ear infections and a lot of fluid in her ears. We attributed it to her clefts and the need for surgeries and healing from surgeries. We attributed it to a language barrier. We attributed it to a personality trait, as she doesn’t like to “perform”. For the longest time she wouldn’t let anyone outside our family even know that she had a voice or could make any noise at all. Maggie has been in speech therapy since healing from her cleft palate surgery in July 2014. By February 2015 she really had made virtually no gains in speech. We had started teaching her sign language to help her communicate and she was clearly making language gains, learning to sign, and gains in understanding us–but very little in the way of speech gains.

Remembering Orphanage Trauma 

We decided, on the advice of her speech therapists, to put her in a preschool 3 days a week to give her a push in her speech. The thinking was that being around people who didn’t know her signs and especially around other children would motivate her to speak. Instead, it caused her a tremendous amount of anxiety. She seemed fine when we dropped her off at preschool, so we didn’t immediately make the connection…but after 3 months of preschool she had become very anxious and clingy with me, unwilling to leave my side or let me out of her sight, and she had stopped sleeping much of the night. Her anxiety was so pervasive that it was causing problems for some of our other children as well, as she didn’t want anyone else to look at or speak to her mommy. Instead of helping her to open up and be more willing to speak, preschool caused her to shut down almost completely.

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Maggie loves to help mommy cook

We took her to the International Adoption clinic and to the Cleft Clinic in Birmingham in May for her regular checkups. The family therapist at the adoption clinic immediately recognized that preschool was the cause of all the anxiety that we were seeing at home, and she advised quitting it immediately. Maggie had also become extremely resistant during therapy. During our time in Birmingham we saw 8 different specialists. Maggie was open to being examined by 7 of them, but when the physical therapist came in (the only person who made immediate eye contact with her and who carried a big basket of toys) she jumped into my lap, buried her face, and refused to cooperate. She can smell “therapy” a mile away and she wanted none of it.

The clinic also advised pulling her out of therapy altogether for the summer, and taking a complete break to recover from all the trauma that preschool was causing. She needed time to re-establish our bond, as her bond had gone from secure to ambivalent. Her emotional needs trumped her therapy needs at that point.

We can only guess that something about being in a classroom setting with two teachers and a bunch of kids triggered orphanage memories and feelings that Maggie didn’t know how to process, and which caused her a tremendous amount of sadness and stress. She has done fine in the church nursery and fine in our home school co op nursery. She plays great with other kids, even strangers. There was just something about the “school” environment that was different, and she was very stressed by it. But once we stopped preschool and therapy, things got better almost immediately and continued to improve week by week until by the end of the summer everything was back to normal.

I was surprised that she could remember anything, since we adopted her so young (13 1/2 months old). Therapists at our adoption agency told us that kids as young as Maggie have not started replacing their short term memories with long term memories yet and they can still access memories from their babyhood. She also would certainly know the “feelings” that things produce in her, whether or not she can remember exact situations. She has recently been wanting to read and re-read an adoption book about Chinese orphanages, and she points to a picture of a crib and signs “Maggie”, and to a picture of a nanny and signs “not mommy”. She clearly remembers and is processing those memories at some level. It is astonishing.

Apraxia

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At the cleft clinic they told us that her surgeries were completely healed and that her clefts and her adoption had nothing to do with her speech at this point. She may have had articulation issues to deal with, but she should be trying to speak and she wasn’t. Her hearing was normal, anatomically she was capable of speech, and she had been home for almost 2 years. They mentioned Childhood Apraxia of Speech, and although one of her therapists had also mentioned this possibility before, it was the first time we began to realize that we might be dealing with something more serious than we had thought.

We came home and worked over the summer to build trust, increase sign language mastery, and start to focus on getting Maggie to make some verbalizations.

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She started therapy again in August, continuing once a week with her private therapist and starting with a new therapist from the school system 3 times a week. Thankfully, we live very close to the school and her school therapist has been willing to come to our home for now to help Maggie avoid the school setting. We are so grateful, and Maggie has been willing to work for her, which is wonderful!!

I have been able to find 3 therapists who will come to our home so far (2 speech and 1 PT), so that has made therapy so much more do-able for us. We gave both therapy outside the home and preschool a very fair (lengthy) try, but she wouldn’t work for the therapist in those settings and she was having meltdowns at home, stopped sleeping well, etc. Because of this, all of her therapists are willing to come to our home, since she is so much more relaxed here and willing to cooperate. We are hoping to add one more therapist an hour away soon, to see someone with more expertise–I hope that she is old enough now (3 years old now) that maybe she will relax more in a therapy setting. Up til now any kind of therapy setting or school setting has apparently been too reminiscent of the orphange–she completely freezes up or becomes terrified.

After her 3rd birthday we started to hear the word Apraxia more and more. Recently Maggie was tested and her receptive speech (what she understands) is at 3 year 6 months while her expressive speech is at 19 months. She has over 130 signs, and has started signing in 3 and 4 word sentences, but she has made only small speech gains and those very slowly.

Childhood Apraxia of Speech is a neurological motor planning condition in which a child can think of what they want to say but their brain is not able to communicate with the muscles in their mouth to tell their mouth how to form the words. There is some kind of a short-circuit. Maggie has to learn every sound and every word over and over until she has learned it to the point of muscle memory. This is a little bit like you or I practicing and practicing and practicing to become a concert pianist–it takes a lot of work and effort and it won’t happen overnight. One hallmark of Apraxia is that she has no consistency, either–she can say something one day but the next day she struggles to reproduce it.

Here is a brief video that gives a little more insight into Apraxia. For more information about  Childhood Apraxia of Speech, visit the CASANA website.

There was a time several months ago where I was very fearful that Maggie would never learn to speak. Kids with Apraxia can eventually learn to speak so well that no one would ever suspect they had a speech problem–or they can remain essentially mute for life, or a range in between. There are a lot of variables and it is hard to say what Maggie’s outcome will be, but at this time I feel we have a lot of reason to hope. She is a fighter, and she is willing to try. She is working hard and our family is committed to giving her all the help she needs to learn to speak, and we are all working with her to develop her speech.

Currently, she is working on learning to say her long and short vowel sounds. She is working to say “mommy” and “Maggie”, two words that she has said a handful of times, but which she finds very hard to reproduce. She may say “Maggie” one time but then she can’t remember how she said it. It is often two steps forward and one step back.

She can say “yeah” and “yum yum”, “up”, “eye”, “mine”, “me”, and a few other simple words. She has many word approximations, also, such as “mah-ee” for “mommy”, “Kee Kee” (what she calls her sister), “eye-ee” for ice cream, “ah-ee” for daddy, “oh” for orange (her favorite fruit), “aa-puh” for apple and “oh-puh” for open. We are practicing every day, multiple times a day.

In future posts I will talk about the speech therapy methods we are using right now, in hopes they may benefit others struggling with Apraxia. It is a long, hard, frustrating journey. We are so grateful that Maggie is a part of our family, as I think her outcome would have been very different if she had not been adopted. We are grateful to be part of what God is doing in her life!  She is truly a precious little girl who brings so much joy to our family!

 

Talking about adoption with a nonverbal child

Maggie has been trying to communicate with me about her adoption recently, even though she is little–just 3 years old. She is not verbal yet and communicates through sign language.

A couple weeks ago we were reading a child’s board book about Chinese adoption called Love You Like Crazy Cakes. She got excited and started pointing to pictures and signing words to ask questions about the pictures of the orphanage, babies, adoptive mother, etc. She signed “The babies don’t have a mommy. Where is the mommy?” She also pointed to one of the babies and signed her own name. After we read about the adoption she signed “hold me like the mommy in the book does”. I was blown away.

I verbalized for her–she points and signs and I said “is that baby Maggie?” and she signed yes. In that way we were able to “talk” about the ideas in the book. She has been wanting me to read that book several times a day for a couple weeks.

Now she has moved on for awhile but I am sure we will have more “discussions” as she gets older. I do have fears that she may have a hard time expressing all that she wants to, but as we work on speech we are also teaching sign and looking at Assisstive Augmentive Communication options. I know if she had not been adopted she would never have gotten the help she needs to be able to speak.

Meanwhile, I have found several adoption related board books for preschoolers on Amazon–I read the reviews, and some look better than others, but I have gotten a few as that has been a good vehicle for us to begin talking about her adoption. The pictures really seem to resonate with her.

Benefits and Limitations of sign language

I was hospitalized recently for 10 days, unexpectedly, and Maggie had to spend some time with grandma and her aunt and uncle part of that time.

It really showed us how important it is for her to be able to communicate with others–she knows sign language, but no one outside our immediate family knows ASL.

We put together a small photo album with pictures (very simple clip art type images, about 8 images per 4 x 6 inch page) and she points to things when she wants to communicate with someone who doesn’t know her signs, or when she wants to say something she doesn’t have a sign for.

We included foods she likes, emotions (happy, sad, sick, etc.), family members, activities (play, TV, eat, go outside), and “yes”, “no”, “like” “don’t like”. It didn’t take her any time at all to figure out how to use the album, and now she has another tool in her arsenal.

With that said, she is 3 years 4 months at this point. Her apraxia is severe, and it is going to be a long road for us to get her talking. She can say uh oh, mama, and yeah clearly. She says “ow” when she is hurt but it is a little distorted.

She has about 130 ASL signs, and she is starting to approximate–though many of her approximations are only vowels (aaa eee for daddy or iiii-eeee for ice cream) or a single consonant (mmm for milk). Sometimes she can say her name, with lots of practice, but then the next day she may not be able to do it again–her apraxia makes even her gains inconsistent, so it is often one step forward, two steps back. Our family members who don’t understand sign language ALSO don’t understand her limited vocalizations.

We decided recently to pick 10 target words to focus on for speech. We are choosing the words based on their frequency as well as what sounds she can already say. I am thinking of focusing on bye bye, her own name, more, and no as she needs those words and she has the “B”, “M”, and “N” sounds and the “I” and “E” and “O” as well. At this point most of her vocalizations are just babbling. That is progress, though, as she only started babbling recently.

She already says yeah, which has helped a lot in narrowing down her wants and needs as we can ask her questions. I read recently that it is a good idea to figure out what sounds they can already say, and pick your initial target words using those sounds… So I am working on that with her speech therapist, trying to think of high function words that use the sounds she already has and make those one focus for her therapy.

We are also continuing to expand her ASL vocabulary. Most of her time is spent at home with us, and to be honest, we are her biggest limiting factor. She can learn the signs faster than we can, but they are only useful if we can understand them too! We use a lot of sign language board books (check on Amazon, there are many good ones), and signing time videos to learn the signs. The board books are better as it is tempting to put the Signing time video on and then get busy doing something else. Using the books forces the reader to learn along with her as we read and demonstrate and help her little hands form the signs.

She loves signing and picks it up so quickly. She has only gained a handful of words in the last year, yet she has learned over 100 signs in the last year. Now that she is becoming more verbal we require her to pair a word or word approximation with her signs, and she is making the transition to speech for the words she can say or approximate.

This is a long road and ultimately a child needs to be able to communicate in some way. We have to keep moving forward with ASL while we work on speech. Using sign language helps develop speech as it develops a capacity for language. Maggie has many very useful signs for family members, eat, drink, change diaper, sleepy, it hurts, I want, favorite foods, color signs, and verbs (swing, walk, play, read, etc).