Regarding Bellamy

 

 

Many of you that follow this blog or me on twitter probably have read me mention some issues with our youngest daughter, Bellamy. 

Here's the story so far...

It started this past summer when she was about 18 months old.  My wife and I realized that she wasn’t talking much, this coming after several other "delays" we noticed such as walking much later than any of her sisters did.  After consulting with our pediatrician, she recommended that we take her to the state of Nevada's Early Intervention Services to be evaluated.  After 4 other children, you get used to certain milestones and Bellamy just wasn't hitting them.  If you were to listen to family and friends the cause would be due to the fact "she doesn't have to talk, her sisters do it for her".  We weren't buying it.  Like I said, we've been through this four times prior, we know what to expect.

Through the NEIS evaluations we found that she was at least 50% delayed in speech and communication.  She also had quite a few developmental red flags that are sometimes seen with autism.  Also through the  NEIS we were able to be seen by a developmental pediatrician.  Parents whose children show signs of autism will understand how limited the resources are and how hard it can be to find a "specialist".  When you do, good luck on seeing said specialist within a year and good luck having your insurance pay for anything.  But that's a rant for another day.  We are extremely fortunate that Nevada has such a good program with some really good people involved.

The doctor felt that Bellamy did not have autism, but possibly a hearing problem.   From infancy, Bellamy had one ear infection after another, and we came to find out that she had fluid trapped in her ears for an extended period of time.  Simply put, she probably couldn't hear much at all for almost 10 months straight.  The next stop was to an Ear, Nose and Throat doc.  Ear tubes were placed, and adenoids were removed.  We were told that we should expect to see results in about three months.  Well, it’s been three months, and although we have seen some progress, we haven’t seen anything dramatic.  In the meantime, she wants to communicate so badly that she gets frustrated very easily.  This has lead to her pulling her hair out and a lot of heartbreak.  In fact I joke frequently (to hide the pain) that she has "anger pattern baldness".  She also has some other outlets for her frustration that breaks a parents heart, such as banging her head against tile floors when she gets upset.  With a child that cannot communicate properly, figuring out what is upsetting them is almost as frustrating for the parent as it is for the child.

We went back in to ENT this week and we had another "failed" test.  Not because Bellamy actually failed the test, it's because she doesn't understand what is happening and gets upset.  Things deteriorate rapidly when she gets upset, and because of this we are always on pins and needles anytime we take her out in public.  Public "meltdowns" where your kid starts pulling their own hair out and head butting you get old very fast.  I won't even go into the "looks" you get from others.  They have no idea, but that doesn't matter as their "looks" make you feel like a failure.  The ENT has prescribed a sedated hearing exam called an ABR that will measure her brain response to sound.  This will let us know once and for all if she can hear and process any, some or all sounds.  Hopefully this will take place next week (thus the cancellation of my trip to France).  In a highly condensed nutshell, this is where we stand at this point. 

At three years old she will be re-evaluated by the developmental pediatrician, and then we’ll know at that point if the diagnosis has changed.  In the meantime NEIS has behavioral, speech, and occupational therapists visit our house every week to work with Bellamy.  For the most part, she really enjoys these sessions as do we.  Even with all the frustration and meltdowns, Bellamy is mostly a happy kid.  She loves playing with her sisters, running around, jumping on the trampoline, playing peek a boo, and most of all finger painting.  It's tough on a parent though, especially for my wife to have never heard your child say "ma-ma" let alone mommy.  She does say da-da a lot, but we've found that really doesn't mean me.  Her speech is fairly limited to "ba" and "da" sounds, although she does have a few others such as "ning" when she is really mad.  We work on speech therapy daily and love when she makes new sounds.

Please keep Bellamy in your thoughts and prayers, and I will keep you updated on her progress.

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About

My name is Craig Bender aka ThinGuy. I'm a Principal Software Developer for Oracle's Virtual Desktop Engineering group.

I architect and evangelize the use of Oracle's Desktop technology including Sun Ray, Secure Global Desktop, and Oracle VDI.

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