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Speech, To Take a Break or Not?

Speech, To Take a Break or Not?

Our son was born with a bilateral cleft lip and palate (BCLP) and has been in speech therapy since he
was 18 months of age.  I value private speech therapy and we are faithful in keeping our weekly appointments, incorporating speech techniques at home to gain consistency and working on a great deal of repetition.

speech therapy

It’s just that at this point we have now added orthodontic appointments to our ‘have to’ weekly list and he has a palatal expander and permanent bar on the bottom.  We’ve been told that his cleft will temporarily widen due to the palatal expander and that his speech intelligibility is going to degrade because of the widening cleft and cumbersome contraption in the roof of his mouth.  All of which we are currently witnessing.

This kid has weekly speech and reading therapy already and now we have added orthodontic appointments!  His therapist believes that there is value in continuing speech therapy and that other things can be worked on while suffering through the changes taking place due to Phase 1 of his orthodontic treatment.

My husband and I have been seriously discussing our options and are leaning towards giving speech therapy a break.  His speech is not going to improve while undergoing orthodontic treatment in preparation for his bone graft surgery, so why not give him a break?  It’s not forever and they are estimating that he is going to need the bone graft in 6-9 months.  Speech therapy can resume after healing from the bone graft.

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Has anyone else gone through this and found value in continuing speech therapy while undergoing orthodontic treatment?  Did you take a break and regret it?  Or was it a much needed break for your cleft kiddo that allowed them to just deal with the ortho stuff?  We have a lot to consider and once we make a final decision I will post an update.  Any input or feedback, even from a therapist’s point of view, is welcome!

 

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Early Speech Intervention

Early Speech Intervention

Early speech intervention will make a difference in your child’s development and progress with regards to his ability to communicate effectively.  Having a multi-disciplinary approach to our son’s care through the Cleft Palate Center has been a crucial part of his development over the years and especially in the beginning stages for his speech development because we had all of our resources in one place.

I remember thinking that the suggestion for him to begin speech therapy as soon as he started babbling seemed a wee bit aggressive.  However, after speaking with his team therapist about my concerns and the reasons why starting speech therapy so early on were suggested, we decided to give it a try.  Eventually, we were able to see for ourselves the difference it made.

Due to our son’s cleft palate and his inability to suck properly, his  intraoral muscles were underdeveloped. He started speech therapy at 17 mos. of age. I would sit in the observation room watching the therapist and the techniques she was using with him. As a toddler he was pretty busy moving about the room, checking out all of the new toys, and seemed to drift from one activity to another pretty quickly. His therapist figured out what would engage him and became a true friend to him. He still mistakenly refers to his current therapist as “Becca” from time to time. 🙂

I recommend developing a good relationship with your team members because being involved in your child’s care is crucial to carrying over the techniques at home and incorporating their methods into your daily routine, thus having consistency and seeing overall improvement.

One technique our therapist shared with us was to simply practice blowing bubbles at home. As simple as that sounds for you and me, I promise you it is not so simple for your cleft affected child. It was a frustrating experience for both of us, but we kept at it and the moment your child is finally able to blow bubbles is one you most assuredly will not forget.

We had several small bottles of bubbles at home and periodically throughout our day we would venture outside and try to play with them. Our son was pretty frustrated because he couldn’t get any bubbles to form and I got to see first hand that he was in fact blowing through his nose and nothing was happening for him on the bubble front. When he would let me I would gently pinch his nostrils and have him try, which began resulting in some bubbles forming. This was a great confidence booster and got him to want to keep trying. I would catch him pinching his own nose and trying to blow bubbles. Sometimes it would work and sometimes it would not. I purchased one of those swim nose clips at Walgreens and decided to see if that could help him at home. He was resistant at first but after a bit he would let me put it on and when he saw that he could actually blow bubbles better with it he began pointing to it  for me to put on him when we would practice “bubbles” in the backyard.

Blowing bubbles and pinching his nose helped him to distinguish between blowing through his nostrils and redirecting the airflow through his mouth. It took awhile but eventually he did catch on. We would then try bubbles without the clip or pinching of his nostrils and he seemed to get stronger and better the more often we did the bubble game. It was rewarding for both of us to work on this at home and go back to therapy with a marked improvement to share with his therapist.

Another fun way to work on his air flow and to strengthen his intraoral muscles was to play a game where we would take cotton balls and put them on the dining room table or any flat surface and use straws to blow the cotton balls around. We would set the cotton balls at one end of the table and both of us would blow through the straw trying to move our cotton balls to the other end of the table first. Again, this was frustrating and a lot of air was escaping through his nose and not the end of the straw but making sure that he kept at it was key. He would pinch his nostrils and see the difference in getting those cotton balls moving and get so excited! This is definitely a game you want to play interactively with your child and I recommend you do not leave them alone with cotton balls and straws. Toddlers like to put everything in their mouths, nose, ears, etc. so playing this with them is important.  Do not leave them unsupervised.  

I especially liked this suggestion from our therapist and that was to make freezer pops at home and let our son have them throughout the day. As simple as this sounds, and it is simple for a typical child not dealing with a cleft palate, it is another activity that can help them to strengthen their intraoral muscles. For you or I this task doesn’t seem all that involved but consider your cleft affected child. Having to use their tongue to really get at that freezer pop is work and the more work the stronger and better they get at it.

I didn’t want to buy sugary pops for him so I would take fruit, fruit juice and unflavored Greek yogurt and make my own freezer pops for him. If I didn’t have any of these on hand I would simply take orange juice and fill the molds, which he liked just as well. It doesn’t need to be complicated or expensive. These were fun treats and unbeknownst to him an activity we were incorporating into his therapy.

These are just some of the techniques we used to crossover therapy at home and I’m sure your therapist will have some more fun, creative and interactive ideas tailored to your child’s needs and interests that will work for you and your family.

If you are considering whether or not to begin therapy at an early age, I recommend it. It helped our son tremendously. I believe that taking what we learned during therapy and working at home with him was an invaluable learning tool for all of us.

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Cleft Palate Team Meeting

Cleft Palate Team Meeting

Today we had our 6 month check up with his Cleft Palate Team at St. John’s.  It was a long morning for all of us!  Gavin was a champ though, as usual.  He knows that everyone wants to look in his ears, his mouth and listen to him talk so he gets through all of their requests with minimal fuss.

I packed a bag with books he needs to practice reading, his therapy homework to work on and his school project.  The Center had a volunteer dog that came to visit the kids and help to pass the time so in between playing with “Mike” the black Labrador we were able to work on our therapy and homework getting quite a bit done.  Daddy packed a snack bag so that got our little guy through lunch.

Not much has changed since our last check up.  There was discussion of having his frenulum clipped, again.  The speech pathologists believe it will give him more tongue movement and the team dentists believe that it will prevent the erosion of his gums behind his bottom teeth because of the constant pulling.  The frenulum is the soft tissue that is attached to the underside of his tongue.  His is fairly taut.  He can stick his tongue out but not very far and because of the tension there, the tip of his tongue is pulled back giving him a “lizard” tongue, which he thinks is kinda cool.  We do not want any unnecessary procedures so in the future should he need to have dental work done or another surgery then at that time they can clip the frenulum.  At this time though we are opting to simply wait.  His speech continues to improve so it’s not a “have to” situation.

His ears are still looking good with the one ear tube hanging on by a mere thread…still. For now we will continue on as planned with our reading and speech therapy.  His team will wait for his dental age to progress and then we will begin planning out his alveolar repair surgery.  Overall, it was a good check up and we got to visit with the nurses and he even got some playtime in with the other cleft affected kids there waiting on their team visits.

I appreciate these team visits that are uneventful.  Makes me less anxious and we know we have some time before we have to start worrying about the next big surgery.  In the meantime, we still have a lot of work to carry out but we are a work in progress and progress we are making!

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Education Specialist for reading therapy

Education Specialist for reading therapy

As part of our son’s growth and progress, reading is yet another challenge we are working towards overcoming. The first step has been to find an Education Specialist for reading therapy.

His first grade teacher called us in for our parent/teacher conference and what we already knew was confirmed.  He was struggling with his reading. This should not have come as a complete shock but hearing the difficulties he was having and knowing that I did not personally have the skills to assist him was hard to hear nonetheless. Of course I set about researching and trying to figure out what steps we needed to take to get him on track and to help me learn how to teach him and get him over these hurdles.

First, we went to his speech therapist that he visited weekly and talked to her about our concerns.  We went to her first because she is working with him weekly on his speech and we believed she could point us in the direction we needed to take with regards to reading. Speech and language are all connected and I simply did not know where to start.

Through a great deal of research and phone calls I was led back to his initial speech therapist, Julia Hobbs Speech Pathology  and I’m so glad I did!  She and her staff, Angie of course kicked it into high gear and began putting things into motion.  Gavin was coming up on his Spring Break and they were able to maneuver schedules and get us in for an evaluation with an Education Specialist they were raving about.  We went and it was a 2 hour evaluation with a break at about the 1 hour mark.  Gavin was a champ and made it through the evaluation giving them everything they needed to get a true assessment of what specifically were his challenges.

It was interesting to hear the specifics of where he was faltering and they assured us that he would overcome these obstacles and be well on his way with his reading and writing.  The only thing was the cost of seeing a specialized therapist and the insurance not covering it. Our son needed this help so we were going to have to figure it out but it was not going to be easy.  That and his speech therapist quit in the middle of it so not  only were we in the middle of trying to figure out how to get him the help he needed reading but we needed to find a new speech therapist that specialized in working with cleft affected children!  Geez, when it rains it pours people….

I am happy to say that there are very generous people out there and our fabulous extended family over at Julia’s office took the liberty of applying Gavin for a grant through St. John’s Hospital to cover his Education Specialist.  We got this fabulous phone call from Julia informing us that it would all be covered for one year and we could begin therapy the following week.  On top of that the therapist lived near us and was willing to come to our home to work with Gavin rather than having us drive all the way to the West Side during the week.  Great news!  I don’t have to drive on the 405 and I don’t have to pay?  Ah, the catch. There was one.  There always is, isn’t there?  The therapist was full with her  schedule and could only see our son at 2 p.m. even though he gets out of school at 3:12 p.m.  ( I know, 3:12 right?  Seriously…) I was able to get in touch with his teacher after school and explain the situation to her.  She understood his need for this specialized therapy and told me not to worry about it that we would figure it out so that he wasn’t missing everything in that last hour each week.  She would double up on his homework and send it home for us to do or move things around so that he was learning those lessons earlier in the day.

What a blessing it is to be able to have all of these people around us working together to make sure that Gavin gets what he needs.  It makes things hard for everyone and schedules are thrown off but somehow it all comes together and begins to work.  Gavin is getting the help he needs and I am learning how to help him even more here at home.  He is starting with a new speech therapist and she knows his Education Specialist quite well so they are keeping in contact and making sure they are coordinating their efforts to make sure Gavin is getting the absolute most out of his therapy.

A great deal has happened and all in a short time but it is true when quoted that all things happen for a reason.  Perhaps this is the change that we all needed in order to facilitate this next phase in our son’s care.  It’s a new chapter for all of us and I continue to be amazed and grateful to those we have around  us caring for Gavin and wanting him to succeed and share in his successes as much as we do.

So much love to Julia Hobbs and her team of specialists!  Angie –  you are a force to be reckoned with and you get things done just like you say you will!  To Mrs. Z. for her willingness to work around Gavin’s school schedule and allow him to leave an hour early each week for his therapy while making sure he is still getting the work  he needs to complete in class, done.  To my parents who enjoy getting a weekly dinner with our daughter as we are no longer at home in the evening one night a week for speech therapy – thank you!  My village – my people – I love you!

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Speech Therapists Come and Go

Speech Therapists Come and Go

As you begin your journey through speech therapy you will find more often than not that you are going to go through speech therapists as if you are popping bon bons while sitting at home watching Dr. Oz.  Totally do not know what a bon bon is but most people think it’s what I’m doing at home all day so I like to reference it whenever I can.  Sorry – off topic.

It seems that every time we finally get some momentum and start seeing some real leaps and bounds with our little guy that our speech therapist, who specializes in working with cleft affected children, gets married, pregnant, or just decides to quit in general.  I’m not mad at them for their life changing experiences, I’m not. It just adversely affects our schedule and we lose momentum so I tend to not be as thrilled as one could be at such news.  Selfish I know.  As I’m being informed of their departure I’m usually smiling and nodding, offering congratulations when appropriate – all the while thinking to myself “crap, how am I going to find another therapist that we like, what days after school do we have open to try to schedule, what is the insurance going to say and why is this happening to us, again?”  I know!  Selfish selfish selfish…Marsha Marsha Marsha!  That is the reality of what is going on in my head.

You will also learn that when your child begins school and has an IEP (Individualized Education Plan) for speech therapy that you shouldn’t try to get on a first name basis because you will have no idea that your child has been moved around from therapist to therapist for various reasons or that he did not even attend therapy for weeks at a time due to some budget constraint, etc.

This whole process weighs heavily on you and if you are anything like me YOU will make sure that you are informed and be on top of everyone’s behind because this is  YOUR kid and no one is going to make sure that he/she is getting what they need unless it is YOU.  Yes – I AM THAT MOM.  And you know what?  I really don’t care what any one of these administrators thinks of me because if they are NOT doing their job I will surely let them in on that not so secret topic.  I look at it as me helping them to be better employees, managers, etc. in that they will at least try to be mindful of a parent on the other end of that child so often getting lost in their admin crap, after having dealt with ME.  I am not mean and I strongly believe that you get more with honey than you do with vinegar but my sarcasm at someone’s lack of due diligence when pertaining to my child is not lost on anyone.  Believe me,  it’s sooo NOT.

At this juncture we have lost another therapist after only a year with her and my son has already gone through a therapist change at his school earlier in the year.  It’s difficult to find a good speech therapist that specializes in working with cleft affected children.   You need to make sure that you find a therapist that has experience in this area.  Time after time I have been told that any therapist can work with him because they are working on articulation and that a cleft palate repair is not something that needs to be taken into consideration. WRONG!  There is  a huge difference in my child’s ability to work with a therapist that understands his palatal repair, remaining fistula and speaking nasally to compensate for the sounds he has trouble making.

He has speech therapy through his school and is on an IEP.  It is in a group setting and is only for 25 minutes compared to his 50 minutes of private therapy weekly. We have gone back and forth on this issue but for now we keep him in the school therapy to assist with repetition and to just reinforce being around his peers, hear them talking and really hear the sounds they are making.  I do not believe that the therapist at school has a real understanding of his deficits from a cleft affected standpoint but any assistance my child can get with cleaning up his sounds is helpful.  So be mindful of that and make sure that you find a private therapist that does understand speech from a cleft palate repair that can truly focus on your child’s specific needs.

We are fortunate to have worked with Julia Hobbs Speech Therapy in his early years and she is my go to for assistance and recommendations for new therapists should the need arise. We only moved therapy to someone closer to us when our son started school because driving to the West Side on the 405 to the 10 was not an option at 3:30 p.m.  Trust me.  It is a small community and Julia knows everyone so when we lost another therapist I contacted her and got her recommendation to Megan McCormick of  Shoreline Speech Therapy in Hermosa Beach.  It’s not as far as Julia and Megan used to work in Julia’s office so she has a real understanding of working with cleft affected children.

So far we have seen her twice and our little guy is responding to her and we are seeing progress.  Every time we start with someone new he has to push and figure out what he can get away with at each appointment and really feel out how his therapist is going to respond to his jokes so the fact that she is getting him to work in these first few sessions is pretty outstanding to us.

I urge you as a parent to stay super involved in their therapy and to ask for homework so that you can implement the same techniques the therapist is using at home.  It’s important that you are correcting your child in the same manner that the therapist is because repetition is  the key to seeing real progress and being able to hear it for yourself is a big deal.  When I have asked for homework I have been met with a surprised face as most therapists have told me that parents generally do not get involved and merely bring their child in weekly and expect for that to carry them through.  I strongly believe that it takes a village (I’ve said that before I know) but it’s true.   Even though having strong villagers around us to assist our child is awesome the responsibility is strictly ours and I take that seriously.  Our entire household gets in on it and my husband and daughter will hear the corrections I’m making at home when our little guy is speaking or reading and they follow suit.  I know he must feel like everyone is all over him all the time but these reminders really do make a difference in that he begins making the changes beforehand so as not to have to hear all three of us correcting him and asking him to repeat what he just said.  So you see – progress. That is our goal after all.

Even though another one bites the dust for us (speech therapist in case you missed that) we continue to move forward in our journey.  My son has learned to roll with it and to see it as an opportunity to play with new and different toys at this office.  Plus he gets to practice his manipulation skills out on the new therapist until she finally realizes she has been “charmed” into giving him extra time with a game or 2 treats instead of one at the end of therapy.

Take everything in stride and keep the voices in  your head to a minimum, if possible.  It’s a constant for me.

 

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Sign Language

Sign Language

As your child grows and begins to babble you will notice that it is going to be slightly more difficult for them to form the words you and I are used to hearing.  This is going to cause a great deal of frustration both on  your part and your child’s because they are not going to be able to express themselves in quite the way that they want to.   You may experience anxiety of your own because you simply cannot understand what your child is asking for and so tension tends to run high during your already busy day.

Early on our son began going to private speech therapy and for us this was at approximately 17 mos. of age.  This was important because they worked with our son to improve his tongue movement and strengthen his oral muscles so although you might think that going to speech therapy so early when they can hardly speak sounds ridiculous it truly is an important step in your child’s progress with language.

At speech therapy we spoke at length to his therapist about our frustrations at home and our child’s inability to communicate with us what he wanted and  how tantrums were becoming the norm for us.  Our therapist suggested we begin introducing sign language as a way to communicate and to eliminate the frustration between us so that he could then focus on his language building skills yet still have a way to get out what it is he is trying to say.  They showed us a few “signs” that we could get started with and to go to the internet to look up signs as we needed them.

This was incredible!  We went home and the first  sign we tried with our son was “cup” so that he could begin telling us that he wanted his milk.  He picked up on this within the first day of showing him and would get such a big smile on his face after he was able to “tell” us what he wanted and actually have us get it for him.  We began introducing more signs for him while continuing to say the word we wanted him to say.  Most of the time  he could only get out the first letter or sound and that was okay because he was trying and he was still getting what he wanted and we were able to understand what he wanted.

My daughter picked up on the signing as well and he was able to communicate with his sister and shortly  thereafter the grandparents also began seeing us sign and would keep with it so that he could go to any one of them and express what he wanted as well.  We saw a change in our son that was immediate.  He was no longer throwing himself on the ground out of frustration and we were no longer wanting to pull our hair out over not being able to understand our child.

We found it easier to get him to try and say the words of things he wanted even if he could not get the whole word out we were getting to understand his language.  For example, “milk” came out as “miii” but he was trying and he could say the beginning sound so eventually the end of it would come.  I encourage you to speak with your therapist about getting some guidance on a few “signs” you can use and incorporate them into your own household as a way of communicating with your little one.

Here is a link www.babysignlanguage.com to help get you started.  The website has a few print printable charts and you can even look some of the signs up on YouTube to see how to actually do the sign correctly.  Early sign language with your baby is not something just cleft affected children can  use to communicate.  A lot of parents with typical children incorporate it into early learning and find it useful so this is just another tool for you to experiment with and see how it works for your family.

 

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