The Domino Effect — 5 Minutes for Special Needs


                               

For the last two years or so, we hadn’t had many appointments with specialists.  Precious doesn’t have any serious medical issues.  She’s got minor ear, nose, throat issues, so we go every 6-12 months, and she has dental issues, but these only require regular dentist appointments for now.

She has an undiagnosed congenital (she was born with it) issue.  It started out as low muscle tone and turned into a global developmental delay with a more noticeable cognitive delay.

A few months ago, we got a call from the geneticist, asking us to come in to be re-evaluated.  While we were there, she noticed we hadn’t seen the opthamologist for a couple of years.  The opthamologist had told us to come and see her ‘as required’.  As Precious has nystagmus (shaky eyes), the geneticist figured we ought to go even though nothing had really changed with her eyes.  The geneticist also noticed a slight curvature of Precious’ spine, which warranted a back x-ray and a follow-up visit to the orthopedic surgeon to confirm the scoliosis.

We had called the developmental pediatrician ourselves to get an appointment, as she is the lead in Precious care, as we needed to get a renewal of Precious’ speech prescription so it would be covered by our work health insurance, and because we wanted to see where Precious is developmentally.  We saw the pediatrician last week, and she noticed that we hadn’t seen the neurologist in 4 years and the chart said “follow up in 1-2 years”.  She’s put in the referral for that so we should be getting a call soon.

We will be seeing the psychologist this week to help us with placing Precious in the correct program at school, and the first visit is a 1.5 hour assessment for Precious.  We’ll get the results a few weeks later; adults-only.  I’m pretty sure the psychologist will tell us that our daughter needs to go to a special program, and that should spawn further appointments.

All this to say that we have been busier than usual lately, compounded by Precious illness two weeks ago and her older brother’s flu that came this week.  He only missed 2 days of school; she missed 5.

Also this week, we’re meeting with the school’s occupational therapist, physical therapist and speech and language pathologist to discuss our daughter’s program and progress.

I went back to work full-time 5 months ago, after a 2-year period of few appointments, only to be inundated with them now!  If I could have seen the future, I would have tried to get some of these appointments before I went back to work.  Luckily I have a wonderful manager who has been very patient and understanding, and I’ve done everything I can to minimize the disruption to work.

Email Author    |    Website About Beth

Beth is a mother of three, happily married, Canadian, and working for the government full time. Her youngest daughter, Precious, has a global developmental disability. The family keeps themselves busy with piano lessons, swimming, school, work, gymnastics, skating and hockey.

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1 TammieMP February 13, 2011 at 11:27 pm

I know exactly what that feels like. We haven’t seen anyone in a while and this month alone, we have 5 visits to various specialists. But thanks I really should make an appointment with the optomotrist 🙂 squeeze him in this month?? who know. When it rains it poors. Glad your work isn’t giving you a hard time. Left my last one for that reason, they weren’t so flexible.

2 Beth February 20, 2011 at 9:26 pm

Ouch – sounds like you are really busy right now. We met with the school on Thursday and have at least two psychologist exams in March, plus another meeting with the school in March. Add to that all the winter illnesses and I feel a bit like cracking!
I hope your new employer is good. I have to thank my boss next week for being so understanding the last couple of months.

3 Jo February 14, 2011 at 4:04 pm

Just wantd to wish you all the best as you face the next round of appointments.
Peace

4 Beth February 20, 2011 at 9:27 pm

Thanks!
Peace is just what I need.

5 Maggie Mae February 16, 2011 at 8:57 am

Been there, anticipating I’ll be there again. If I knew then what was coming, I used to think I wouldn’t have gone back to work just yet. But the timing was right financially, if you get my drift… and the 2 part-time work-at-home jobs that fell in my lap at our moment of need fit the bill more than not despite adding stress and scheduling complications when illness and special needs appointments fill up our calendar. I see it as our new normal and picked up a professional planner to help manage all of our appointments and time.

6 Beth February 20, 2011 at 9:28 pm

Wow Maggie Mae! My boss suggested I get a personal assistant and you’ve gone and done that! Is it working well?

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