| Chapter 13: First Days of School |
Last
Bto3 to School Transition Meeting
January 31, 2002
|
|
|
Cheryl
and I had spent last night nervously cramming for our first official P.P.T.,
or Planning and Placement Team meeting.
We thought we’d be setting down detailed goals and milestones for
Rose’s first IEP or Individualized Education Program.
Things have been a little crazy lately so we’re trying to play
catch up as usual. We took
turns reading through negotiating the Special Education Maze book
(Anderson, Chitwood, Hayden) and worked on writing out some questions and
comments about Rose and a very rough first pass at few goals. Today
we met with the PPT team (I think, “team” in redundant because the
“T” in PPT also stands for team, but I’ll let that one go.
I think I might already be in danger of asking some absurdly
detailed questions). The team is made up of the school principal, psychologist,
occupational therapist (OT), an OT intern, physical therapist (PT), speech
therapist (ST) was out sick, Rose’s soon to be classroom teacher and
Cheryl and myself. We were
joined by Karen T (birth to 3 PT) and Jane R (birth to 3 ST).
Rose didn’t make it to this meeting.
She’s been feeling a little sick lately, getting over another
cold so she stayed home with Erin and Kate.
The team was a little disappointed to not be able to see Rose again
and it was nice to hear them say that. The
meeting started out with Karen T. and Jane R. giving summaries of their
birth to 3 final assessments to the PPT.
Then we spent some time going through all of our questions.
One thing that came up, although bus service is available, we are
just not ready to put our little 2’10” tall, 25 lbs, Rose on a school
bus. Cheryl drove Erin, and
Katie to their 3 and 4 year-old preschool classes.
They didn’t take a school bus until the first day of
kindergarten. Right now it
just seems like too much to ask of Rose (or of Cheryl and me).
It seems like there’s time for this one later.
This is enough transition for us for now. Rose’s
new teacher invited Cheryl and Rose to come and visit the class a few
times a week for a couple of weeks before Rose’s official first day of
school. She thought it would
help ease Rose’s transition in to the classroom with the comfort of
having her mom along side her. All
in all we talked for over an hour, the conversations were very enjoyable
and gave us a chance to start to get to know Rose’s new team of
teachers. Towards the end of the meeting, the principal went through
and outline of what type program they were planning for Rose; 4 mornings
per week, Monday through Thursday, 1½ hours of speech therapy per week,
two ½ hour individual sessions and one ½ hour group session, one hour of
physical therapy in two half hour sessions and another hour of
occupational therapy in another two ½ hour sessions. I
attempted to use my one pearl of wisdom I had picked up from another
parent of a child in special-ed in town, ‘Don’t let them schedule any
therapy on Mondays, with all the holidays that fall on Monday, you end up
missing a lot of therapy sessions.’
It made sense at the time and I passed the comment along to the PPT,
asking that Rose not have any therapy scheduled on Mondays for that
reason. The
principal thought about it for a minute, and then very nicely pointed out
that there is only one Monday holiday left in this school year, Memorial
Day. The team discussed it
some more and figured out that Rose probably wouldn’t have any therapy
on Mondays anyway, just because of how all the different therapists
scheduled their weeks. We
talked a while longer about a few other things and the I asked the
question that had been floating around in my mind since the night before
when Cheryl and I were up late cramming, “Were we going to set some
specific goals for Rose’s IEP today?” The
principal answered, “Oh, no, not at this meeting.
The purpose of today’s meeting is just to determine if it’s
appropriate to place Rose in our program.
And, of course, based upon the recommendations from the birth to 3
therapists and our home visits, we think it’s appropriate that Rose be
placed in out program. As far
as setting firm detailed goals, we feel it’s just too early.
We really haven’t gotten a chance to know Rose well enough yet to
set meaningful goals. The way
we like to do it is to have another PPT after the child has been in school
for six weeks or so and then work out detailed goals.
I think that would be about mid-April for Rose.” We
all kind of took this in for a second.
I thought that it certainly sounded reasonable, but it was
different than what we were expecting from the stories we had heard and
from advice we had read in Negotiating the Special Education Maze; ‘have
clear definable goals.’ I
glanced at Cheryl, Karen T. and Jane R.
They seemed okay with it. I
thought about it some more. It
did seem to make a lot of sense. The
team of teachers and therapists the school was offering seemed wonderful.
All the classroom hours and therapy sessions sounded great.
I definitely got the feeling that this was a school determined to
make a difference in our daughter’s life.
And I knew that Cheryl and I were still so new at being Rose’s
education advocates. We had a
lot to learn about when to challenge and when to trust, when to be
demanding and when to be a team player.
It reminds me of our medical experiences when Rose was first born;
initially we were more demanding of progress and information: but
eventually we learned to trust and to work better as a team, putting more
faith in the medical folks abilities and complementing that with the
understanding and comfort and care that a mom and dad do best.
I think we still asked as many questions, if not more, but our tone
changed, from expecting or demanding results to trying to understand what
was happening and why and where we could best fit in and work together.
We were fortunate that Rose’s care was in wonderful hands then
and I think we are fortunate again. I’m
sure I’m making it sound like more than it was, just a brief moment of a
few words and a few glances. I
thought about it and all these feelings did run through me because they
are always with me, just below the surface of my conscience thought. “Wait six weeks? Get
to know Rose better?” It
did make sense. It did sound
like a good idea. “April?” I said, “April sounds good.” I realize now, like when we were in the hospital with Rose, it’s a matter of trying to get the balance right, the right balance between knowing when to push as Rose’s advocates and knowing when to let go and trust the people that do this for a living.
|
|
|
|
|
|
It’s
hard to believe it’s almost been a month since my mom passed away.
Even six weeks before, as she first showed signs if her illness,
the time has swept by unbelievably fast.
There
are days I often think back on my memories of my mom.
I think back to the time, during Rose’s heart surgery, when I
would call my mom to give her the progressively worsening news.
Some how my mom had the strength to answer each impossibly bad
piece of news with a clear, steady, strong voice, “We’re all praying
for her.” Never even a hint
of panic in her voice. I was so unsteady myself that it wouldn’t have taken much
to unhinge me, but my mom’s strength helped carry me through. As
I think back on my mom’s illness, I’m grateful for the time we spent
with her and the comfort I hope we brought to her.
One of the enduring lessons our experience with Rose’s surgeries
taught us was that, when faced with a mortal crisis, drop all the
distractions of your daily life and stay close.
|
|
Last Birth to 3 Visit February 21, 2002 |
|
|
|
|
Our Parent's Letter to Rose's School February 24, 2002 |
|
|
Early Childhood Education Center Dear Principal and Teachers, We have enjoyed Rose’s first two transition meetings, her visits to the classroom and we are very much looking forward to Rose starting school at Roger Wolcott, learning new things and meeting new friends. Our primary goal is that Rose’s experiences with first the 3 year old and then 4 year old classes will prepare her to enter Kindergarten in the fall of 2004 in a fully inclusive setting with her age group peers. Although Rose is our third child to enter the Windsor Schools she is our first child with special education needs. This is very much a new experience for us as parents. We are looking forward to this being a very positive experience and we welcome your guidance on how to accomplish our child’s education goals. Included below is a information about Rose that we hope will help prepare you for Rose and hopefully help smooth her way. Thank you for your help and support and openness to our many questions. We are very much looking forward to Rose’s next big step. Please do not hesitate to e-mail us at mack1200@aol.com or call us at our home phone number if you have any questions or concerns. Chris McAuliffe Cheryl McAuliffe
- ~ -
Toilet
training: Rose is very comfortable on and around the toilet. Rose has been getting on the toilet with help since she was about 18 months old. She will sign toilet when she needs to go and she will usually make an extra effort to get somebody’s attention. Usually making a point of seeking out Mom or Dad if we weren’t already in the immediate area and signing toilet and yelling, “Baaahhhh!!!” to get our attention. Rose still needs much help with getting on and off the toilet. She is starting to become more aware of her clothes and is working more to pull her pants and pull-up down and then pull them back up after she’s gone. Rose uses both a small potty seat and a regular toilet depending on whether she’s near our upstairs’ or downstairs’ bathroom. Rose can not climb on to a regular toilet. She needs to be lifted up and placed on the side edge of the toilet. While Rose sometimes does all right without any additional support she does much better if she can place her feet on a small foot stool. Often Rose, who’s very flexible, will bend over completely and place her hands next to her feet on the foot stool. This is her most comfortable and secure position. Also, Rose does need to be watched closely while on or around the toilet. Every once in awhile she will lose her balance and slide duppa* first into the toilet. She will also, every once in awhile, reach into the toilet bowl. (*The term we use for Rose’s bottom is the Polish word “Duppa”. Cheryl is second generation on her mother’s side.) Eating / Oral Motor:Rose still has oral motor issues. Rose often uses straws to drink. When sucking from a straw Rose will place her tongue on top of her lower lip. Also, Rose still puts toys and other non-food type items in her mouth. If she is working with anything small enough to go in her mouth she needs to be watched. In particular she seem to enjoy chewing on crayons. Rose does still stick her tongue out from time to time. We obviously never encourage her to do this by making a game out of it. We have used different strategies and cues over the last few years to remind Rose to pull her tongue back into her mouth. Right now, we just call Rose’s name to get her attention and then tell her, “Rose, close your mouth.” Sometimes we touch our right index finger to our chin as we talk to her. Gross Motor: Rose needs help walking up and down stairs. Usually we hold one had and Rose will reach for a railing with her other hand. She has a harder time going down stairs then up stairs. Rose’s balance is shaky, not nearly as good as her older sister’s when they were 3 years old. She also doesn’t always watch where she is going. Literally walking one way while looking another. Rose could also use improved peripheral awareness. She frequently trips over obvious objects like dad’s feet. Also, Rose does not bend her knees well when she walks. The slightest change in terrain can be difficult for her, like stepping over a door threshold or walking from grass to driveway. Rose’s
current spoken vocabulary: Rose is starting to talk more and more in the last few months. She still signs with most of her spoken words. Here’s the list of Rose’s current spoken words: No, go, yaa, maa, daa, wow, whoa, more, tah (for stop), bye, hi, dow (for down) Rose’s
current signing vocabulary: These signs Rose really has down pretty good. She will sometimes use them herself without any prompting from us. Rose does approximate many of her signs. Some are pretty accurate but many are not quite perfect although we can usually understand her fairly well in the context of our conversations. Also, Rose appears to be left-handed. Most times she writes or draws with her left hand. And she consistently signs with her left hand as her primary signing hand. For the most part Rose’s signs are from the Signing Exact English dictionary with a few olds ASL signs from when she first started signing. If you are interested in exactly how Rose signs a particular word the best way to find out is to ask her. Although, usually if asked to sign any one particular word Rose will not typically do it. She needs to warm up. If you start with 5 very familiar signs first as in, “Rose, sign Mommy, sign Daddy, sign Erin, sign Katie, sign Pepper.” And then ask for the sign you are interested in, she will almost always sign it. In fact I would suggest sitting with Rose some time and running through her entire vocabulary in this way. Also, please let us know the name signs for her teachers and classmates so we can use them in conversations at home.
Here’s a list of signs Rose is currently using to varying degrees:
Signs Rose has learned Signs Rose is learning |
|
Turning 3 February 26, 2002 |
|
|
We had a big extended family party on Sunday and then, today, we had a smaller party with just the five of us. Including the small party with Karen and Jane, this was Rose’s third run through the singing, candle blowing, cake eating and present opening. Like in everything with Rose, the practice helps a lot. Rose had the routine down and enjoyed herself a great deal. She’s developed into an especially good candle blower. She enjoyed the big reaction she got from all of us when the candles went out. |
|
Re: Week #1 of School 2/28/02 8:49:16 AM |
|
|
(These are some e-mails back and forth between Cheryl and Rose's aunt, MaryRose, about Rose's reaction to the start of school.) Hi Cheryl. I've been thinking of you
a lot this week and how things must be going for |
|
Re: Week #1 of School 2/28/02 10:47:07 AM |
|
|
Hi MaryRose, It's been a
trying week with Rose and this separation thing. The first day she
was fine when I said goodbye but then had 3 meltdowns of crying but
recovered. The second day I got a sad look when I said bye and she
cried once so that was better. The 3rd day she cried as I left and
the teacher told me she held her and sang every song she knew and Rose
fell asleep on her lap for 1/2 hour then she was fine. Today she
started crying as we walked into the school and I said goodbye at the door
and she continued to cry as I left. I'm getting ready to go pick her
up so we'll see how this 4th day of school went. The good part is
I've been walking and exercising all week and feel great and very sore.
I've come close to crying myself but I know this is the best thing for
Rose and the teacher is great. She's been so reassuring to me too.
Well have a good weekend. Cheryl |
|
Three
Year Check Up
March 1, 2002
|
|
|
Cheryl took Rose in today to see Dr. Mascolo, an unusual wellness visit.
They discussed Rose’s frequent illness through this past winter.
It seems like since last October, Rose has had one cold a month,
with each cold lasting 2 to 3 weeks.
Rose might have been healthy for a brief week before she picked up
the next cold. This pattern has been going on for the last five months with
an ear infection and a few sinus infections thrown in. It has been a tough winter.
The rest of us have had more than our share of colds, too, but it
seems to hit Rose first and much more often and take more out of her.
Often at night the congestion would be more than she could manage
and she would wake up crying. The crying would make it worse, with the tears adding to the
congestion, Rose would have gagging and coughing fits that would get her
pretty worked up and upset. Cheryl
or I could usually get Rose settled down and back to sleep after a while
but I think the lack of sleep took a toll on the three of us (I’m
convinced Erin and Katie could sleep through a train wreck).
We were getting overtired and mildly cranky but Rose in particular
was often losing her appetite. She
was eating and drinking even less than her normally small servings. And all that frequent congestion had Rose mouth breathing a
lot. That, combined with our
cold, dry New England winter, had left Rose with a bad case of dried,
cracked lips. As these colds
stretched into weeks. Cheryl
often took Rose into see the doctor, either Dr. Mascolo or one of the
other doctors that was covering, to check for ear infections, usually
negative, and sinus infections, usually positive.
Rose also had this routine down pretty good, including the weigh in
on the doctor’s scale. A
while ago, one of the Family Medicine nurses figured out how to get Rose
to stand free from everything and get an accurate weight.
After Rose stepped onto the scale she just said, “Rose, put your
hands on your stomach. While
Rose complied with her request, the nurse would quickly adjust the balance
weights on the scale and get Rose’s weight. Each time, about once a month, the answer was the same, “25
pounds” The
lack of weight gain and the changes in Rose’s temperament had Cheryl and
me concerned. Each time Rose
would get sick, within a day or two she’d go from being generally good
natured, inquisitive, independent kid to needing to be consoled and
comforted a great deal, wanting to cuddle on mom or dad’s lap for hours
at a time, or, sometimes it felt like, days at a time.
Eventually, after two or three weeks, Rose would slowly recover,
usually, but not always with the help of an anti-biotic, and we would be
rewarded with the return of our old Rose.
Her energy and appetite would come back as would her
inquisitiveness and her desire to play on her own.
And often during the brief windows of good health we’d see her
suddenly taking big developmental leaps like showing us three or four new
signs in just a day or two, or starting to use a spoon to feed herself. This was always a welcome encouragement to us.
It seems silly but each time, as Rose got sick and cranky and
rundown, we’d almost start to believe that her personality was really
changing, that this was the way she was going to behave from now on, and
then she’d bounce back and we’d be reminding, to our relief, of just
how good a kid she really is. It’s
amazing how many times we’d ride through this roller coaster pattern.
You would think we would know better and anticipate it by now but I
think Cheryl and I are still much more worn down by Rose’s challenges
then any we’ve ever experienced with Erin or Katie. Cheryl
relayed much of this to Dr. Mascolo.
She listened empathetically and then said that she’d like to test
Rose for allergies but first she’d like to see Rose get clear of all of
winter illnesses before doing any tests. Possibly an allergy to something
could be causing Rose’s problems or it could just be that she’s a
little more susceptible to everything that’s been going around.
Cheryl had to agree, it has been an unusually hard winter for our
family, we had the stomach-bug-puking-thing go through our family twice
within a month, and many other families we know in town had been sick as
well. Dr. Mascolo
suggested that if Rose’s congestion and sinus infections continued into
the spring then it would be a good idea to get her tested for allergies. Dr.
Mascolo did schedule a number of other tests and doctor’s visits as part
of Rose’s three year old checkup; a blood test for anemia, Celiac
disease, and thyroid health, neck x-ray for atlantoaxial instability, a
third visit to the audiologist, a third visit to the eye doctor, a first
trip to the dentist and her three year old checkup with the geneticist at
Children’s Hospital. And the final tail of tape, Rose is now 34” or 2’10” tall and weighs 26 lbs. This puts Rose at about 60% on the height curve and about 40% on the weight curve for a 36 month old. |
|
How's Week # 2 Going? 3/6/02 12:52:25 PM |
|
|
how
is week # 2 at school going for Rose? I hope there
|
|
Re: How's Week # 2 Going? 3/6/02 2:43:10 PM |
|
|
Hi MaryRose, Well
overall it's better but part of that is I'm expecting some issue.
Now Rose has figured out a stall tactic---the toilet. Before we
leave she signs toilet and of course I can't ignore it so we go to the
bathroom and she sits and sits and sits. Finally I say well Rose we
can try again later and she starts to get a bit weepy as we go out the
door. To make it a bit more complicated Katie was home Mon. and
Tues. with Strep. throat so Rose says why is Katie home and I have to go
to school (you know in her way and my interpretation)?
|
|
Re: How's Week # 2 Going? 3/6/02 2:55:47 PM |
|
|
Cheryl, I've always said
that Rose is one clever girl. Apparently she's got
|
|
Week # 3 3/13/02 2:24:36 PM |
|
|
Hi MaryRose, Well week 3
is going much better. On Friday I took her to the Dr. and she was
positive for strep. so with 3 days on the antibiotic she started
this week fairly healthy. The assistant has been meeting Rose at the
front door of the school and taking her to the classroom while I put her
backpack in the locker and leave. This has been working much better
and we have not had a meltdown or crying spell at all this week and she's
participating in most activities when she's not in therapy.
|
|
Check-Up
Update
March 15, 2002
|
|
|
Cheryl talked to Dr. Mascolo on the phone today.
All the blood tests looked good except for the thyroid.
It looks like Rose might have a borderline case of hypothyroidism.
The indicator the test checks is TSH.
Normal is 4.20. Rose
was “normal high” at 4.48. Dr.
Mascolo recommended that we have Rose re-tested in 2 or 3 months to
confirm the finding. She said
that if Rose did have hypothyroidism it would be easily treated with
medication. She also said
that she would forward the test results to Dr. Greenstein, Rose’s
geneticist, so he could review them and give us a second opinion. Tonight
Cheryl and I pulled out a few reference books and read up on
hypothyroidism. Babies with
Down Syndrome ~ A Parent’s Guide ~ 2nd edition had a brief
summary. It mentioned some of
the side effects if its left untreated.
The symptoms are listed as “decreased energy level, show physical
and mental development in young children, thickening of the skin,
constipation, and sleepiness.” Further
on the book said, “hypothyroidism is a potentially serious problem and,
if undetected or untreated, can cause developmental delays and other
serious complications.” The book also reassured us, as Dr. Mascolo had, that it can be detected early by the blood test before any symptoms show and that it is readily treatable with medication. Cheryl and I found this somewhat of a reassurance but we were both a little bit shaken by even the small chance that Rose would have to struggle through some other cause for developmental delay. |
|