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.

tdowell22

I live in SoCal with my husband and two kids. Love reading, writing, being a foodie and coffee aficionado. I support other moms of cleft affected children. Our family is continuing along on this journey and we seek to help other families navigate terrain we've already covered. All Smiles is what we want for all cleft kiddos!