International Stuttering Awareness Day! (October 22, 2010)

Tomorrow is International Stuttering Awareness Day!  My 8yo, Nate, has a severe stutter.  He began speech therapy last year, and made significant progress.  I've shared parts of his story over the last year, and I want to share another part today.

He has stuttered since he was about 3, but we were encouraged by different pediatricians that he would outgrow it.  The stuttering seemed to come and go, and since we homeschooled it wasn't much of an issue in school.  He's friendly, and even though he stuttered he still talked to strangers and shared his thoughts with others.  The stutter never seemed to hold him back.

We noticed it getting worse when he was 7, so we approached our local school and had him evaluated.  He qualified for speech services, and received one-on-one therapy from the school's speech pathologist twice a week during the last school year.

This year, we made the decision to enroll both boys in the local public school.  One of the biggest surprises I had was to find out that he no longer had one-on-one speech therapy.  He was grouped with 3 other boys, and he told me that none of them stuttered.  As the year has progressed (they just finished first quarter), I noticed that his speech has gotten worse not better.

At the end of the last school year, he could speak 2 or 3 sentences before stuttering.  Right now, he can rarely speak 1 sentence without stuttering.  His stuttering is becoming more pronounced, and secondary behaviors are increasing.

I had the opportunity to sit in on one of his speech therapy sessions, and found that he received about 5 minutes of practice during the 20 minute session.  The other children in his group have completely different problems with their speech, and while I understand their goals may be similar (fluent speech), they can't possibly learn anything from each other.  I also understand that budget concerns and great need stretch the speech pathologist's time.  I have the highest respect for her, yet at the same time feel that I must advocate for my son.

I sat in his session the week before Fall Break, and my husband and I had many conversations about what to do and what our next steps should be.  On Thursday of that week, Nate came home with a huge bump on his head.

After many false starts and stutters, he was able to tell me that he was walking and talking with his head turned.   He slammed into a metal pole pretty forcefully with his head because he wasn't looking where he was going.

I asked, "Did you go to the nurse?" as I got an ice pack out of the freezer.  (It was a very large lump!) He told me "No".  I asked, "Did you tell Mrs. 3rd grade teacher?"  He replied that he tried to, but she pretty much ignored him.

After a few phone calls (and voicemails) I was able to speak directly to his teacher.  She had no recollection of the conversation at all and felt terrible that he was hurt and didn't receive help.  She asked him if he struggled telling her, and he told her that he was able to get it all out.  She then asked if it looked like she was paying attention and he told her "No".

She & I both told him that he MUST push for help when he needs it!  He has to make sure that he has someone's attention, maybe start the conversation with "This is important!", or even write a note if he is having a hard time talking.

This was the first time that I ever realized that stuttering could be a safety issue.  Nate is a sweet, kind and sometimes shy child.  He sat the rest of the day with a big lump on his head, and never said another word about it.  The lump is still noticeable (much smaller, though!) 2 weeks later.  I worried about what would have happened if it was something more serious?

I am sure that he did manage to say all that he needed to, but didn't feel up to trying to repeat  himself a second time, so decided to let it go.   I hope that we have impressed upon him the importance of speaking over and over again if necessary, but I am also even more pushed to find additional help for his speech.

Tomorrow Bo, Nate & I are attending a National Stuttering Association conference.  I am eager to connect with parents and professionals, while Nate has the chance to connect with kids who also stutter.   I want advice and help on how to handle the oral fluency reading tests he has to take regularly in the classroom.   I want to find out what other resources are in our area.  I want Nate to know that he is not alone in his stutter!

I know this is long, but I'm going to close with some pointers when you encounter someone who stutters.

• Please don't complete their sentences for them.  (believe me, their siblings and other family members probably do it too much as it is already!)
• Pause and let them finish.  Even if it looks like they're staring away, they may have a silent block and they're still trying to get the words out.  Even if it means that you'll have to keep silent for 30 - 45 seconds, you're doing them a favor by letting them complete their thought.
• Never, never, never mimic their speech.  As difficult as it may be to believe, we've had adults as well as children mimic Nate's speech.  It is not funny, and it does not help.