Posts Tagged by Sensory Processing Disorder

Mr. Miyagi

E is losing her occupational therapist at the end of December.  She is a victim of school district budget cuts.  It is cheaper for the school district to hire independent contractors (read no medical insurance) than to keep their own OTs on staff.  E will of course continue to get services but it will be with a different provider.

I’m sad we are losing her as part of our team but resigned to what is happening at the same time.  It wasn’t always this way.

There was a time when I knew E had CAS but couldn’t get anyone to diagnose her.  I finally found an SLP who diagnosed her and we began therapy with her immediately.  I put all of my faith in her.  I knew we were in for a marathon and she was going to be the coach – our Mr. Miyagi if you will.  Then four months into therapy she decided to stop seeing E because we didn’t fit into her schedule.  E continued to see another SLP in the practice but she was not as experienced dealing with CAS.  E didn’t really care but I was devastated.  Mr. Miyagi had abandoned us.

In reality, it was I and not E who needed a Mr. Miyagi.  E was completely dependent on me and I needed someone to tell me what to do.  I would do anything I was told, I just needed someone to tell me what I should do.

In the three years since that happened, I have come to the realization that there will be no Mr. Miyagi for me.  Instead, I have to be my own Mr. Miyagi.  I do the research.  I make the treatment plan.  I find people to put on our team to help make this happen.  The buck stops with me and it’s scary as hell.

Losing that first SLP was the worst.  We’ve gone through several more – well, eight to be exact.  We’ve found another specialist, one who knows her stuff, one who wants to be on our team.  She treats me like an equal.  She’s the expert in treating CAS and I’m the expert in E.  The two are not synonymous so we have to work together to come up with the treatment plan that works best for her.

I’m really going to miss our OT.  She has worked with E for two and half years, longer than anyone else has worked with her in the school district.  She’s knows her stuff and she genuinely cares.  She’s going to be a real loss to our team.  E has come a long way in her sensory processing and fine motor delays journey because of her.  I’ll be forever grateful but we must pick up and move on.

We’ll have to wait and see what January has in store for us


E slept in our room until she turned two.  We’re co-sleepers and it works for us.  At two, just like we did with her older sister, we moved E into her big girl bed in a room the girls shared.  Whereas S had begun sleeping through the night almost immediately, E struggled.  At her developmental pediatrician’s recommendation we began giving her melatonin to sleep.  It worked to help her fall asleep but without fail she woke up in the middle of the night every single night.

We tried everything except to let her cry.  It was impossible because she was sharing a room with her sister.  Moreover, it just felt wrong to me on so many different levels.  I didn’t feel like she was waking up to be manipulative or because we hadn’t taught her how to sleep.  For a lack of a better description, it just felt like something was wrong with her that neither she nor we could figure out.

Soon after she turned two, E stopped taking naps as well.  Whereas S slept 11-13 hours a day at this age, E only slept about 9.  Everyone told me that all kids are different and not to compare the two.  E probably just didn’t need as much sleep.  When I looked at charts for the amount of sleep needed for her age, E was on the very, very low end of normal.  But my husband and I did not think it was normal.

E was tired.  She fell asleep anytime we drove somewhere in the car and she was hyper.  Some of this hyperactivity was certainly due to her sensory seeking needs so we looked into that first.

The girls’ room shared a wall with ours and if I was awake in the middle of the night I could hear E slam her body into the wall just moments before we heard, “Mama?” If we checked on E in the middle of the night we’d find her sleeping in all sorts of contorted positions.  She looked very uncomfortable and I couldn’t imagine the sleep she was getting was particularly restful sleep.

Was she seeking sensory input in the middle of the night?  We tried a weighted blanket.  She wanted nothing to do with it.  We tried giving her more sensory input before bedtime.  Nothing.  We tried giving her less sensory input before bedtime.  Nothing.

Eventually we just settled in to not only broken sleep for E but also for us.  Our son A was born and we began rotating beds.  Sometimes E in her bed alone, sometimes my husband or me with her, sometimes E in bed with us.  We were all exhausted but we didn’t know what to do and just hoped that she would eventually outgrow this stage and learn to sleep all night on her own.

A little over a year ago, E started getting ear infections again.  She had had ear tubes put in at sixteen months.  They had helped but now, at three and a half, they had fallen out and she needed to have a second set put in.

While we waited for our appointment with her ENT, I scoured the internet hoping that other parents had miracle stories of their child beginning to sleep through the night after ear tube surgery.  I didn’t really find any but I did find stories of children having their adenoids removed and then sleeping through the night.  Most of the references were of tonsillectomies and adenoidectomies.  However, E had never had tonsillitis.  No one had ever even mentioned adenoids to us before.

Adenoids are lymphatic tissue where the back of the nose and throat meet.  There is no way to see them by looking into your child’s throat.  The only way to tell whether or not they are enlarged is by X-ray.  Enlarged adenoids can block the flow of air, especially when a child sleeps.  This can lead to sleep apnea – basically the child is not able to breathe when asleep and so she wakes up.  This can lead to dozens or even hundreds of apnea episodes during the night.

I told my husband about my research and he read some of it himself.  One of the symptoms of enlarged adenoids was snoring.  He pointed out that E snored.  This was true but she was not a loud snorer.  It was more that if she was asleep in the same room with you, you would notice that she snored.  Her snoring was not loud enough to keep us awake but did happen just about every night.

My husband told me to tell the ENT that she snored.  Exaggerate if I needed to but get him to order an X-ray.  Without an X-ray there was no way to tell if her adenoids were swollen.

When the time came for her appointment that is just what I had to do.  We had an HMO and we could not just request an X-ray ourselves.  The ENT, a very conservative doctor, wanted to know how much she actually snored.  How often?  I lied through my teeth telling him it was every night and that she kept us all up with it.  He ordered the X-ray.

The X-ray was an experience in itself because E was terrified of the technician.  He was a huge older man who limped and used a cane.  I couldn’t get her to hold still and eventually he had to hold her head still with his hand.  She screamed bloody murder and it was yet another experience that I hoped didn’t scar her for life.  The X-rays that were taken actually show his fingers superimposed over her brain to keep her still!

Rather than mailing the X-rays to the doctor, they gave them to me to take to our next appointment.  Immediately I came home and looked on the internet for pictures of X-rays of swollen adenoids.  There were a few good ones out there so as lay people my husband and I were pretty convinced that her adenoids were indeed swollen.  However, we would not know for sure until our next doctor’s appointment.

We had to wait several more days but at her next appointment, the ENT confirmed that E did indeed have very swollen adenoids.  Her airway was nearly cut-off.  We didn’t need a sleep study or anything else to confirm this.  The X-ray did the trick.  We scheduled her surgery which would be both for ear tubes and an adenoidectomy.

E’s surgery was March 7, 2011.  It was more painful for her than just ear tube placement but she came out fine.  Her ENT warned us that even though the adenoids had been removed, the tissue around them would be swollen for a little while so it might take several weeks for us to notice a difference in her sleep.

The days went by and nothing happened.  I was afraid that E was one of the non-success stories.  Maybe the swollen adenoids hadn’t been causing the sleep problems after all?  My husband told me to just be patient.

Then, at just about two weeks post-op, E slept through the night, in her own bed, all night long!  And it happened again the next night.  And the night after that!  E started to sleep through the night just like that and she has done it ever since.  I can count on two hands the number of times she woken up in the middle of the night over the last year.  Each time has been because she was sick or had to go to the bathroom.  We have not had one unexplained wakeup in a year’s time.

E now gets about ten hours of uninterrupted sleep each night.  She has A LOT of sleep to catch up on.  Is her recent progress due to increased sleep?  It’s certainly not the only reason but I think it definitely plays a part.

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