Big Accomplishments in Small Ways                                June, 2002

Many of this years Rose page stories have dealt with being slightly overwhelmed by all of Rose’s 3 year old checkups and struggling a little to begin understanding Rose’s entry into the formal school system, and getting through last winter’s cold and sinus infection season.  But when we take a step back and look at Rose she’s doing great.  She is healthy and growing and surprising us all the time.  Rose has had a wonderful start to her school career and is now in the middle of a summer session that offers all most as much as the regular school year.  Sometimes all that she has done and all that she has accomplished gets lost in our concern that we, her parents, will miss an important health cue or educational or developmental opportunity. 

We do need to step back sometimes work to try to find the right balance.  She is doing amazingly well and has accomplished much even over the last few months.  Rose has made friends at school, who run to play with her when they see her around town.  Rose has seen one classmate, in particular, at few of our town’s weekly summer concerts.  Rose was starting to tap her name sign, and R-hand on the chin in anticipation when we mentioned we were heading down to concert.  Her big excited “O” face told us how much fun she was having looking forward to having.

Rose is talking more, some words but lots of sounds, just about every sign is accompanied with a word, sometimes clearly understood like, “mom” or “da-dee”, usually not so clearly like “eeze” for please, but with the signs combined with the sounds we know what she means. 

And she’s picking up new signs all the time.  Rose has been working particularly hard at more intricate hand shapes.  She had been approximating the  “I-Love-You” hand sign with her thumb, index finger and middle finger.  We were glad to see it in response to our spoken and signed I-Love-You’s and only occasionally corrected Rose’s sign.   A few months ago, one of these corrections must have coincided with Rose making a leap in her understanding of hand shapes.  She started really working on her ability to extend her pinky finger and fold her ring and middle fingers into her palm, using her right hand to form her left dominant hand into the correct shape.  Within a day, she had it.  From then on Rose’s bedtime ritual of our hugs and kisses and good night’s and I-Love-You’s were answered with Rose’s proud signing back of a very clear I-Love-You hand sign, sometimes coyly withheld to the last possible second as she heads up the stairs to bed.  She’s starting to develop a sense of humor and a sense of dramatic timing. 

Rose has also made the big leap from a crib to a bed with no problem at all and even gave up her pacifier.  The switch to a “big-girl” bed went very smooth despite concern and hesitation on Cheryl and my part.  Rose made the transition just as smooth as Katie and Erin did when it was their turn, (almost).

 Rose had used her pacifier since she was born, for napping, for sleeping at night and for, well, pacifying her.  I guess over the last year or so we have been phasing it out.  First we stopped using it to pacify or quiet her down, we’ve come up with other strategies.  They were just simple approaches to use, alternate means to comfort or redirect her. 

Then, the next big break through was Rose finally going to be at night without her pacifier.  OK, this was another step accomplished by Erin.  She was babysitting one night when Cheryl and I were out. 

When we came home Erin announced proudly, “I got Rose to go to bed without her pacifier.” 

I answered, “Really? That’s great.” Another stressful step that we’d been procrastinating had been made with Erin’s help. 

“Ya” Erin said, “she just cried for a few minutes and then she fell asleep.”  More and more Erin is relying on her toughness.  I though about this for another minute, though, and then I hit on a hunch. 

“Hmmm…Erin, you couldn’t find her binky, could you?”  I accused her in a good-natured way. 

“Well….no, I couldn’t,” she answered only a little sheepishly. But that was OK, however it was accomplished didn’t matter, Rose had made another small positive step. 

Today, Rose is pretty much done with her naps, just occasionally now, Cheryl does still let Rose have her binky then but that will go away when Rose grows out of napping, it seems like that will be soon.  We do back slide a little when Rose gets sick and let her have her binky until she’s feeling better.  It hasn’t been that often lately which does help but it is hard to deny her the extra bit of comfort when she’s hurting.  And Rose seems to understand the wrinkle to the rules, they don’t have to be absolute.  When she’s feeling sick she signs for her binky at bedtime and we’ll give it to her.  When she’s feeling better, she’ll ask for another night or two, signing, “pacify” as she lays back in bed.  I’ll remind her, “Now, Rose, you’re feeling better, you don’t need your binky now” she’ll accept it with a shrug of resignation.  When I leave the room, she might cry for a minute or two and the settle down.  Within a day or so we’ll be back into her normal bedtime routine.  As Rose grows older she seems to adapt easily and readily to more complex rules of behavior.  It doesn’t have to be a simple yes-or-no rule for her.  She’s learned that different rules apply indifferent situations and even with different people, like Rose knows Mom’s and easy mark when she wants her binky, Pad’s a little tougher and Erin, you can forget it.  And Katie well, she’s completely random, and Rose knows it.

A Day at the Beach                                                            July 17, 2002

 We had a wonderful time today at our state’s Down Syndrome Congress summer picnic.  It was one of those golden family moments.  The day itself was very comfortable for all of us.  The weather was great.  The picnic was a well run, very low hassle set up with parking, a grassy field, lunch at the pavilion covered picnic tables, bath house and a beautiful beach all within a short walking distance.  And our whole family was healthy and doing well

Rose is doing really well and its nice to have a special moment to celebrate.  I think that’s part of what today was about.  And Rose was definitely enjoying the moment.  We sometimes joke about her ability to work a crowd, to draw people’s attention and to make a connection and she was in top form today.  We had lunch sitting at one of the picnic tables under the pavilion, all five of us at the table with two other families.  Rose finished her hot dog and juice and then climbed down to go meet all the other families sitting at the other picnic tables under our pavilion.  It was amazing to sit back and watch her work her way from table to table, stopping to engage the different new people she meet in conversation for a few minutes and then moving on to explore further.  She was in her element and I’m sure this was a very warm and supportive audience for her but it’s something we’ve all seen Rose do many times before. 

We spent sometime sitting around the picnic table visiting with a few of the other families that we’ve met through the last two years with the CDSC.  One family, a young couple with their first child, were coming to the end of the mom’s maternity leave and getting ready to make the adjustment back to both parents working.  The mom was going back to her first shift job with a little less ambition than she had when she left.  The dad worked second shift, he had accumulated enough seniority to move to first shift but he was going to stay with his second shift position so their child would always be in the care of family and wouldn’t have to deal with day care.

I described our family situation, a more traditional one, with Cheryl staying home with the kids.  I told them that I knew it wasn’t possible for everyone but it has worked out well for our family.  Through Erin and Katie, Cheryl worked par-time as a nurse, working evenings and weekends but that stopped when she became pregnant with Rose.  I mentioned how I’ve cut back on work, too.  I had quite a few years of working ridiculous number of hours.  I stumbled through words trying to explain how, with Rose, our priorities had shifted tremendously with all her medical issues, she certainly needed all of the help her family could give her.  We gladly gave that help but still, somehow, we weren’t prepared for how much a change it was for us.  I often remember the advice of a neighbor with a child with a disability gave us, just get through the first year.  With Rose and her medical challenges that had been good advice for us then.

Now I was listening to this young families story, their child had gone through the same heart repair surgery as Rose but with much less excitement, and the mom and dad were already trying to scale back their careers so they’ll be there for their child.  The dad was talking about staying on second shift even though he had enough seniority to move to first shift and mom was talking about cutting back her career ambitious so her time and energy wouldn’t be diverted away from her young child.

I tried to after some words of support but I’m afraid they may have come out a little heavy-handed.  For us, the all-parent care approach had been the lowest stress solution, for our family, but that’s obviously not going to be the case for every family.  I think when I try to put this into words of advice I put too much emphasis on the fact that this worked for us.  Every family is different, with their own unique set of options and solutions and abilities to compromise.  In the future, I think I’ll just offer our family’s story for the sake of what has or hasn’t worked for us and let other families add it to the list experiences and us it as they see fit.  Or maybe I’m just being overly sensitive and self-conscious again.  That’s another new side effect of life with Rose.  It’s definitely a big help to hear other families stories and to share stories about Rose but it does require a stripping away of barriers and an openness that I was previously not familiar with and am only slowly becoming comfortable with.

While I was in this conversation (or another one) I missed an amazing sight.  Rose was playing with Dr. Mascolo’s daughter.  Rose and Christina, a little two year old, were sitting on the ground between the picnic tables as Cheryl and Dr. Mascolo stood by lost in their own stories of shared experiences.  Keeping a watch on their children with frequent glances.  At one point they were surprised during on of their glances to see Rose and Christina engaged in a conversation of their own, the two of them signing back and forth to each other.  It’s hard to describe how amazing this is.  I know that Rose, for the most part, lives in a world that can’t understand her language.  She can understand much of what’s spoken around her and to her but very few people outside her immediate family and some of her teachers, understand what she says back to them.  How often Rose offers a tentative first sign and then receiving no answer, gives up.  I don’t know, but in this day, either Rose or Christina flashed a sign that the other recognized and they were off, they made a connection.  They had a conversation, no interpreters necessary, and no adults getting in the way, just on kid to another.

Later, after lunch, we moved down the small grassy dune behind the pavilions to the beach and set up a camp of spread out beach towels.  We didn’t spend too much time swimming.  The water was typical for the Connecticut shoreline in July, too cold for any real swimming.  I took a few plunges in with Erin and Katie, more as a dare then anything else.  Erin and Katie and Rose drifted into their usual assortment of beach games, digging hole and filling them with sand pails of ocean water, burying each other’s feet in the sand, filling pails with beach sand and building sand castles.  Rose, in particular, was very focused on filling her beach pail, shoveling scoop after scoop with her plastic shovel, Erin and Katie would help turn over the heavy pail, adding to her sand castle.

The family next to us, just a few towels down the beach from us was one we had met through a local play and talk group.  After a while I fell into a conversation with the dad.  We shared some updates on how our children were doing.  In particular, he was very happy with some medical help they’d been receiving for their child through an out- of-plan geneticist.  Three of four times this geneticist had made an accurate diagnosis and recommendation that had successfully alleviated a medical condition his child was coping with.  This doctor was also an advocate of vitamin therapy and a few other enhancement type drugs.  It was a lot to take in.  The dad definitely believed his child was doing better and had benefited from the vitamin therapy and drugs.  I think the geneticist’s accurate insights on his child’s medical problems may have rightly reinforced the dad’s confidence in the course of treatment. 

Cheryl and I have held back on starting Rose on any vitamin therapy other than the zinc supplement that seemed warranted based upon her blood test showing low normal zinc levels.  It’s very temping to believe such things can help Rose be better but we also feel we have to balance it with the dangers of exposing her to high levels of vitamins and drugs when the long term impacts are not fully understood.  And then again, if we wait until they are safely understood, it may be to late for Rose to take full advantage of them.  It’s a real catch 22, a real case of damned if you do and damned if you don’t.  I have read articles on the topic a number of times on the internet.  From the studies that cover small to large groups of people, I can only find mixed results although there are some compelling cases of a few individuals that seem to have benefited.  But maybe those are cases a few individuals who may have had a unique specific deficiency that was addressed by the vitamin therapy.  It’s had to say but the concern about exposing Rose to artificially high levels of vitamins and other drugs over her life time remains.

I’m sure I only expressed myself less than half as well as I did here.  As much as we dwell on these types of topics far more than we ever have before they are still so new to us and without any precedent from the relatively quiet life we lived before Rose.

It was getting late in the day, both our families were starting the long task of packing up.  We said our goodbyes and headed back to our families.  I saw Cheryl and gave her a quick summary of what we’d been discussing.  Cheryl told me her and the mom were talking the whole time about summer school, comparing notes again.  Cheryl had described the program that Rose was in; same classroom as the regular school year, four weeks through July, a new teacher, a new speech therapist, but the same OT and PT, and the same classroom aide.  Rose has made a smooth transition with no problems at all.  The new teacher and therapist worked in well with the regular school team and it seemed like Rose didn’t miss a beat.

Rose had essentially the same level of support except she was getting only 60 minutes a week of speech instead of the 90 minutes spelled out in the recent IEP.  We were a little disappointed and discussed it with the school, but resources were tight and that’s all they could manage for the summer session. 

Cheryl and I went around and around on what to do.  We’ve been very happy with Rose’s school so far and this was our first cause for concern.  We had assumed that the IEP would be following both during the summer session and the regular school year.  Mrs. D, the school principal, had told Cheryl that it was used only as a guide during the summer session.  We had talked to a few folks in town and had received conflicting interpretations and advice.  And Rose was now through her third week of summer school and we were well on our way to procrastinating through our first IEP issue.  I don’t think Cheryl and I have ever been good at confrontations but especially since our experience with Rose in the PICU.  Cheryl relayed much of this story to the other mom and our dilemma of the 30 minutes reduction in speech therapy. 

The story Cheryl got back from this mom far surpassed what we were dealing with.  Their child, while offered enrollment in a summer program, had been denied any of their regular school / IEP defined therapies.  Their school had taken the stance that until their child demonstrated a loss of ability due to the summer vacation interruption their was no way to justify the summer therapy.  In other words, their child would have to demonstrate set backs and failures before the summer therapies were offered.  Their child, about Rose’s age and like her, was doing generally quite well but, by any standard, was clearly behind in a number of developmental categories.  The mom said how they were very frustrated with their school’s negative approach.  Eventually, unhappy with other problems they pulled their child out of school for the summer.  The frustrations around the lack of therapy and dealing with other continuity problems had just gotten to be too much.  They got to the point where the parents felt the summer school was having an overall negative effect on their child and their family.  It just wasn’t worth the aggravation.  After Cheryl told me this we just looked at each other and shook our heads.  It was hard to imagine how frustrated and stressed out the parents must have been, how concerned they had to be that more than two months were going to go by in their young child’s life without therapeutic help.  Our 30 minutes of missed speech therapy seemed small in comparison.

We started to slowly gather the kids and focus them on packing up and getting back up the small sand dune to our van parked at the back of the grassy field.  Erin and Katie grabbed an armload of beach stuff and started heading back.  Cheryl took Rose down to the water’s edge for the final cleansing dunk after an afternoon spent sitting in the sand. 

A friend of mind from the Ct Down Syndrome Congress was walking down the beach and he stopped to ask me how our family had enjoyed the day.  I told him we had a very comfortable, enjoyable day, the park was a great setup, the people had been wonderful, it’s always nice to see old friends and meet new families and the weather was great and the beach was beautiful.  He agreed it was nice day, one of the more effective events that the CDSC put on.  He went on to ask how our family was and how Rose was doing.  I told him we were all doing well, that Rose had started school this year and that it was going very well. 

Then I touched upon the one school issue we were struggling with.  “We are stuck on one thing, though Rose’s IEP had specified 90 minutes of speech therapy a week and the school is only offering her 60 minutes a week for the summer session.  It’s not a big deal but we’re just not sure how to handle it.” 

My friend stopped for a minute and gathered his thoughts, “you know, my daughter is 8 years old now and she’s doing fine but when she first started we had some problems.”  He stopped for a minute to try to recall the situation.  I’m sure it was buried deep under the many facts and theories and opinions he had been gathering in the 5 years since.  Finally, he pulled the story out of his distant memories and told me what they had gone through.  Basically, they were having some issues at home that they were assuming was not carrying over to school.  They had passed the information along to school and heard nothing back.  After six months they got the first indications that, in fact, their daughter was having the same problems at school all along.  They were very disappointed that the school let the situation go on for so long without letting them know, without getting them involved and starting to address the problem. 

My friend wend on, “We tried to work with the PPT for a while but we were getting no where.  It was very frustrating.  Finally, we got a lawyer.  It made a huge difference.” 

“A lawyer?” I said.

“Ya, a lawyer, I can’t remember her name”.  He looked back down the beach.  “My wife would remember.  I’ll check with her and get it for you later.” 

“But what about a parent advocate?” 

“Don’t bother, I’m telling you, you need to bring in the big guns.  If you’re going to do it, go all the way with it.  And she was really good.  I mean, I’m a lawyer myself but this is not my area of expertise.  You need somebody that really knows what they are doing.  We would meet with her before the PPT’s.  She would listen to our story; help us to focus on what was important to us.  She knew what was required by law and definitely had to be provided by the school.  But she was also fair, if she thought we were asking for something we’d never get or were being unreasonable, she would tell us and then she’d go to the PPT with us.” 

“Well, what was that like?  Wasn’t that really stressful?”  Mentally, I cowered as I pictured Cheryl and myself sitting with a lawyer opposite Rose’s team of teachers and therapists that we had been bonding with the last six months. 

“No,” he said.  “It was the complete opposite.  All the stress was gone, for everybody, for the school and for us.  If our lawyer said, “this is the law.  This needs to be done and the school knew it, they’d go along with it, and they’d get it done.  I tell you, it was a tremendous relief for us.” 

“Wow, a lawyer?  I don’t know.” I said, still stunned.

“It’s really worked for us,” he went on. “We keep her on a retainer, it’s not too much.  Now we call her in if we think we need help, she doesn’t go to every PPT.  If we think we can handle it on our own, if there are no major issues, we just handle it.  But, I tell you, the school knows we still have her.  They don’t fool around with us.  It’s worked out really well for us.”  

I struggled to comprehend ever bringing a lawyer into help settle an education issue for one of my children.  “How do you know if it’s the right thing to do?  How do you know if it’s the right time for something that big?” 

My friend stopped and considered my question and then answered, “You’ve got to decide if it’s important to you.  For us it made a big, big difference but you have to decide for yourself.  That’s what it comes down to, is it important enough to you?”  As he finished, he shrugged his shoulders, and held his hands palm out, unconsciously using Rose’s  “all-done” sign.  He seemed unsure of his ability to answer such a hard question on such a short notice but he had answered it well.  It seems like these days the best answer to the hardest question is often another question. 

I looked back to where my family had been, Cheryl and the girls were gone, just a few things were left on the beach for me to bring back to the car.  I realized that it was getting late.  I thanked my friend for his stories and his advise and we said our goodbyes. 

I grabbed the remaining beach towels and sand pails filled with beach toys and headed back up the path through the grass covered sand dune.  I get back to our van, Cheryl was getting the kids settled in the card and packing everything away. 

Erin yelled from the back seat, “Dad, where have you been?  We’ve been waiting for you.” 

Cheryl started to tease me, “Ya, I thought I was the one that usually guilty of the long goodbyes.” 

“I got into a pretty interesting conversation.”  As we drove back home, less that an hour ride from the shore, I told Cheryl about the conversation I had with my friend.  We talked it over and both felt pretty much the same way.  We know we were struggling a bit, maybe just with the newness and the uncertainty of everything, but the way we are approaching Rose’s school works for us.  For the situation that we are in right now, with this school and these teachers and these therapists it’s how we want to work.  Building relationships, building trust, finding a common connection, sharing our Rose, works in a very positive way for us.  After our experience in the PICU, Cheryl and I have been left with a very low tolerance for confrontations.  It definitely changed us, maybe that’s pushed us in this direction.  For this school it seems to be working well for all of us.  Rose has three more years in this school, through two years of preschool and then kindergarten, I am honestly expecting our positive experience to continue through those three years.  Of course, what waits for Rose in elementary school, I don’t know.  I’ve heard stories of the “special-ed” kids showing up in the regular classroom for the pledge of allegiance and then heading off to spend the rest of the day in ‘self-contained’ classrooms.  That’s not even close to the ideal of inclusion we are struggling to understand.

But I’m getting ahead of myself, I don’t know how true those stories are and first grade is still years away for Rose.  Today was a good day for the five of us.  Everybody is healthy.  Everybody had fun.  In between all of the serious conversations, it was one of those pleasant golden moments that we’ve been fortunate to enjoy.