Thursday, November 11, 2010

A special question

Hannah often mixes up "question" with "statement" especially when she's excited to tell me something.  Today she emerged from the bathroom and said, "Mommy, I have SUCH a special question to tell you!"

Hannah can go to the bathroom in our house by herself almost totally independently, if she is wearing easy to pull down pants.  But she often asks for help especially if she gets hung up on the "pulling down pants" part.  Today though, I asked her to go to the bathroom and then told her to tell me when she was all done.  She was wearing a leotard because she and Isabelle were pretending they were at gymnastics.  I thought for sure she'd need help getting it off but figured she would let me know as she always did, or maybe she would figure it out herself.

That's when she popped out and made the above statement.  So I said, "What, Hannah?" And she said:

"Mommy! I went to the bathroom ALL BY MYSELF! Here's what I did.  First, I took off my leotard and got on the potty.  Then I peed.  Then I got the toilet paper and wiped myself.  I got some pee on my hand, but then I wiped it with more toilet paper so it was okay.  Then I put the paper in the toilet, got up, and pulled my leotard back on.  ALL BY MYSELF! Then I washed my hands, dried them off, and now I'm all done! Isn't that FANTASTIC?!"

Yep, kiddo, it is.

Thursday, November 4, 2010

botax round #??

Today Hannah had her 3rd round of botax under sedation and I'm not sure how many botax rounds total she's had, maybe 6 or 7.  The first time we went to the Comfort Zone, she did fine.  The second time she was a lot more anxious about the IV insertion even though she had Emla cream to numb the area.  Today any time the nurse tried to get near her arms, she cried so they recommended giving her some oral Versed (Valium) first to take the edge off her anxiety and give her a little amnesia about the whole event.  That sounded good to me so I agreed and within 10 minutes Hannah was in outer space.  The only downside was the post-Versed hangover: Hannah was cranky and whiny the rest of the day. But I think it was worth it and plan to have them give it to her right away next time.  It's just not worth it to put her through all of that every 3 months.

This round, Dr. B did 18 injections total, 9 in each leg. I never processed the fact that when kids are under sedation docs tend to do more injections. When she was awake, Hannah only got 6-8.  But it makes sense; same amount of botax but spread over a larger area.  And I can see the increased benefits.  She does not scissor as much (turn her legs in and sometimes cross them) and is overall more flexible.

Anyway, I didn't have much chance to talk to Dr. B today about our recent SDR consult at Children's Hospital of NY so when we see him for our 6 week follow up in Dec., we'll hopefully get to do that. Honestly, up to this point he has not been that helpful to us in our research and exploration of options.  My biggest lingering concerns are whether Hannah is strong enough and secondly, where to do the procedure and post-surgery rehab.   It would be great if we could get his perspective on this to help us make a decision.

It's unfortunate that Dr. B is not a better resource for us, considering that he is the one most familiar with Hannah's physiology.  My feelings about him continue to be ambivalent.  I find him to be arrogant, and cavalier.  When we showed up today, he looked at Hannah's file and said, "Wow, we haven't seen her since June.  So what are we doing today?!" To his credit, I think he is a really smart guy and is probably more on his game than he lets on, but this is my kid here and I'm not usually in the mood for flippancy where major decisions about her health are concerned.  He does not inspire confidence.

At the Comfort Zone today, I realized that all of the other patients I saw there were also getting botax treatments.  I  watched as one mom and dad came out of the procedure room after her daughter had been put to sleep, and they were wiping the tears off their face.  I smiled at them, remembering how I felt the first time I saw them put Hannah under.  This time it was much easier.  It's the new normal.  My whole perspective on what's normal has shifted and changed so much since Hannah and Isabelle were born.  Each time we have a new experience, it's rattling and intense and then I slowly adjust and recalibrate and move on.  I wonder how it will be when she has her first surgery.

I would like to connect at some point with the other parents who bring their kids to the Comfort Zone for botax. Everyone mostly keeps to themselves, respecting one another's privacy, but I think next time I'm going to try to find an opportunity to introduce myself to some of them.  I bet we would have a lot to talk about. 

Wednesday, October 20, 2010

Not one of those mothers

Just passing on a link that was shared with me via a listserv I belong to, which really resonates with me.  Please read when you're able.

Not One of Those Mothers

Saturday, October 2, 2010

Guerilla mama

Lately I have been on a one-woman mission to whip my town into shape.  First the school, then the library.  I stole the title of this post from a resource a friend shared with me, which was actually Guerilla Mum since it was written by a woman from Britain.  I like the "mum" bit, it's cute.  But I digress...

So school started and with it, our high hopes for another great year of progress on all fronts for both of our girls.  But on the first day of class when we realized their preschool was down one classroom aide, who also happened to be the aide we assumed would be acting in part as the paraeducator for Hannah as allotted in her IEP services, we got a little alarmed.  After looking into this further, we learned that back in June or July, this decision to have one less adult in the class had been made and yet no one thought to share this with our family or any other family.

This concerned us on many levels, especially the lack of communication with families and the fact that with one less person, we could not see how the preschool staff would be able to meet all of the service needs of the kids in their class.  The girls are in an integrated special ed class, with over 50% of the kids attending being on IEPs but the rest of the kids qualifying to participate for some other reason that put them "at risk" like their families being at a certain income level or being a preemie, which is why Isabelle qualifies.  So there are a lot of needs in their class beyond Hannah's, and the math just didn't add up.

We asked for a meeting with the director of special ed for our district, the co-director of the preschool and the classroom teacher.  We outlined our concerns and asked that they get back to us with specific information about how, in their minds, the math DID add up and they could meet the needs of the current group of kids (and their various IEP services) with the staff they had.  We also reminded them of the equipment they were supposed to have in place at the start of the year, also on Hannah's IEP but also not yet in place.  We told them how concerned we were that this did not bode well for Hannah's transition to kindergarten, where the stakes were raised greatly since this is a full-day program where Hannah would need support in several different environments and throughout the day.  If they could not provide what they promised (and were legally obligated to provide), what would happen next year?  We let them know we were not happy or satisfied with the way the year had started and thought these were issues that should have been ironed out way before the start of school.

After the meeting, B and I concurred that it wasn't likely we would hear what we wanted to hear when the director of special ed reported back to us, because it seemed like she was lobbying hard for not adding more staff people (something about "diluting the classroom experience with too many adults blah blah blah...") .  I started to look into next steps like mediation and due process, rolling up my sleeves and envisioning a long, protracted battle.

Well, I guess it was premature to put on my boxing gloves because the SPED director spent the next two days after our meeting both taking a hard look at the IEPs of the kids in the class, and also sitting in and observing as well as having an outside consultant observe, coding response time for meeting kids' needs throughout the day.  And she came to the same conclusion we had: there was no way, with the staff they had in place, that all of the kids' IEPs could be met with the current configuration of staff.  No kidding! It's sad that this was something she had to discover after we demanded it of her, and that she clearly doesn't have a good sense of what's happening in the early ed preschool.  But the good news is that she is going to make sure another special ed teacher (not just a paraeducator) is in place for most of the day to ensure those kids that require additional one-on-one assistance are able to get it.  We are also going to make sure that Hannah's physical therapist (who acts as a consultant for the school as well) gets in the classroom to provide training to the 1 or 2 people who are most likely to serve in this capacity, again something that should have been done before school started.  And finally, we have a specific deadline by which the equipment they promised will be installed or we will follow up on their non-compliance.


Needless to say, it's been kind of intense around here as we've had to rally our energies around fighting the good fight for our girl.  But we feel like we're forcing this program to look more closely at its services and raise the bar not just for Hannah but for all of the kids going there.  And we're so relieved that we did not have a big battle on our hands.'s on to the library issue, where the handicapped accessible lift has been malfunctioning on and off since we moved to our town 4 years ago.  Grrr....

Tuesday, September 21, 2010

Cure for the blues

When Hannah was really small and we did not yet have a CP diagnosis, but knew about the brain injury and saw her motor delays getting more and more significant, I would often lie in bed at night and cry, wondering what was in store for her and for us, feeling so sad and angry and filled with grief.  Then the next day would come and I would be too busy living life with Hannah (and Isabelle) to feel sad. 

This is what I always come back to, when I get down and out about raising a child with a disability.  The best way to feel better, when I get sad about Hannah's CP, is to spend time with Hannah.  Because she is not a sad child.  She is full of life, and busy living life.  She is motivated, happy, secure, fun, and kooky.  She is having a grand old time and if you're right there with her in that place, there isn't a whole lot of room to feel sad.

Friday, September 3, 2010

Botax benies

Hannah had her latest round of botax at the end of July.  It seems to take about 2-3 weeks to hit its full potential with her and then she often gets weak and unmotivated for a little bit while she adjusts to the new way her body feels with the reduced spasticity.  And then she's starts the steady climb up to the sweet spot where she's feeling loose and strong and energized to do things she would not be as inclined to try otherwise.

We had a rough go this round when Hannah hit her "low" and we think she might also have hit a growth spurt right around the same time.  She did not want to move her body much at all and when she gets like that, it's so hard not to feel defeated by her limitations.  So when she started to get her energy back, it was like the sun finally came out after a long stretch of rain.  She's been on fire! And suddenly I feel like the world is her oyster again, and there's no limit to what she will do. (well, there are limits, but still...)

It continues to fascinate and amaze me, how these site-specific botax injections into the muscles in her legs can totally change the way Hannah's whole body moves and feels.  I'm projecting on the feeling part because obviously I have NO IDEA how it feels for her, but from what I can see in how she moves, what she can do with her body, and her behavior, I'm guessing it's a pretty significant improvement.  There are so many little things she can do post-botax, like shifting her feet into a better position when tailor-sitting, or sustaining a long-sit for a longer period of time, or opening her legs wide to make "snow angels" when we do our stretches at night.

I'm assuming that if we do SDR, she will see similar gains and the best part is, they will be sustained and will not wear off after a few months.  The other benefit I think she'll see, which has me pretty excited about SDR, is the improved energy efficiency she will gain so she'll have better endurance to move her body around.  Currently, Hannah weighs only about 25 lbs and she'll be 5 in a few weeks and this is because she uses so much energy to do the things that other people do with little to no effort.  Even if she's super motivated to walk, she sometimes peters out before she's really ready to stop, and this is frustrating for her and for us.  It would be incredible if she could keep increasing her endurance and not get defeated by her lack of it.

However, one thing I've noticed more with this latest round is trunk weakness: Hannah has been complaining more about getting tired when sitting than I recall her saying in the past.  I'm not sure if this is because of the botax or if something else is going on but it does worry me a bit when we think about SDR. 

We will be having another SDR consult with a different surgeon/hospital in October so this will definitely be on my list of things to ask about.  In the meantime, we're going to ride this post-botax wave for all its worth!

Thursday, September 2, 2010

My Belle

I want to give a shout out to Isabelle because lately I've been feeling like she gets the raw end of the deal.  She's probably lowest on the pecking order of my divided attention to the 3 kids, because she doesn't have a disability and because she is not the baby. 

It's not fair and she handles it gracefully for the most part, but lately she's been giving a few indications that she realizes what's going on and isn't always psyched about it.

It's true that this scenario probably plays out in all families with more than one kid, with kids feeling short-shrifted and parents feeling guilt-laden.  But when you have a kid with special needs it seems accentuated that much more (then again, everything is accentuated when you have a kid with special needs!) The impact this has on your family reverberates through every member.

As of late, Isabelle's become pretty sassy with us.  She's talking back a lot, being kind of fresh, not listening, occasionally getting physical with Hannah when she gets frustrated with her.  None of it is horrible and most of it is typical but I don't want to dismiss it because I do think she's overdue for a little TLC.

I've been trying to find ways to spend more time with Isabelle but also realize that even if I can't schedule this well-thought-out, elaborate "Mommy and Isabelle" adventure, just giving her a bit more attention during a regular day, taking advantage of times when it's just her and I (fleeting though they might be), giving her a chance to try a new skill can all go a long way, I hope, toward repairing some of her feeling of neglect.  OK, neglect is probably too harsh a word but you get my drift...

And yet no matter how hard I try, things will always happen to undermine my best efforts.  In the past few weeks there have been a number of occasions when I'm out with all 3 kids, or just Isabelle and Hannah, and someone makes a comment about how cute Hannah is, or how they love her glasses or her hair or give her props for how well she's walking in her walker, etc etc.  Isabelle is always standing right there and she's a smart kid whose ears work pretty well so I cringe when these moments happen and I want to kick the people who make those comments in the shin.   "Thanks dude! There will be payback for that comment later!"  I'm sure it's no coincidence that lately Isabelle is very into making sure everything that gets doled out around here (drinks, snacks, special treats) is exactly the same between her and Hannah, and she often accuses me of shorting her.

And the whole "people making comments about Hannah" thing raises so many mixed emotions for me for so many reasons.  First, I'm annoyed that people are silly enough to say something to one kid and ignore the other that's standing right there.  Look at her face-would you ignore this lovely smile?!  Also, while I appreciate that people think Hannah's cute (she is!) I often wish no one said anything at all.  Are they overcompensating for their discomfort with her disability by commenting on her appearance? Trying to show how "disability-PC" they are? If she wasn't in a walker and wearing braces, would they fall all over themselves to praise her?  I should give people a break and not get riled up about it but we've had a few experiences of people giving Hannah extra attention which have been downright strange (not in a creepy-strange way but in a "that's kind of bizarre that you'd do that" way).

Anyway...all of this is added to my feeling that Miss Belle deserves a little something of her own.  As the girls get older and more comfortable being away from us and each other, I think it will be more and more important that they each have something that's their own.  It will be hard to see them leave one another behind for other pursuits but I know they'll always have each other.  And they each need their moment to shine.

Friday, August 6, 2010

Finding the right groove

Hannah has said some pretty amazing things lately. Yesterday at breakfast: "Even though I have a disability, I'm still happy." She's so matter-of-fact about it and meanwhile, my heart is being squeezed so tight I think it might burst. She must be going through an almost-five-years-old phase of realizing differences in other people and herself, and trying to make sense of it but without all the added baggage of that will probably be heaped on when she's a little older (like right now, it's all about noting things but not internalizing them, what a great space to live in, huh?!)

Another one of Hannah's gems: "It's okay if people have a disability. It's not sad, or bad, it just means they need a little extra help."

I'm so glad she is expressing what we try to tell her all the time: that she is different and some things are hard, and that there are other people who are also different and have things that are hard about them. But that there are a lot of things she can do that aren't hard for her, and we all have things that are hard and easy. And that's life.

It's tempting sometimes to take the "you can still be and do anything you want" approach, but I'm very sensitive to the potential perils this can bring. I've read a lot about people with disabilities sometimes feeling like they have to be "super amazing", overcoming all kinds of obstacles to do things people didn't think they could do, etc etc and that some folks just wanted to be an average Joe who didn't WANT to feel like they had to live up to these big expectations.

I also don't want to sweep Hannah's difficulties under the rug so they are not acknowledged. I definitely don't want to be a downer and focus on what Hannah can't do, and we are constantly offering up opportunities for Hannah to try out all kinds of things But I feel like it's really important for her to know that if she decides some things are just too hard to do, that's totally fine and also, to acknowledge that it SUCKS that some things are really hard for her to do.

I do hope that in our quest to introduce Hannah to a world of opportunities, we find something (or things, plural) that she can do with little or no effort, things that are just where her natural talents lie. Because while it's awesome for all of us to stretch ourselves and do things that take hard work, it's also awesome to feel naturally competent and confident in something that we just seem to do effortlessly.

In this process of helping Hannah to find her groove, I'm grieving some for the things that we most likely will NOT do as a family, or do with the ease and regularity I would have liked, if we didn't have a kid with a physical disability. When I fantasized about having kids, I pictured introducing all of my favorite things to them: canoe camping in remote wilderness spots, snowboarding, going on big hikes...things that we could adapt in some fashion so that Hannah could participate, but that will not be like what B and I used to enjoy doing before we had kids.

Maybe all parents have to do this to some extent: you help your kid to find their rhythm in the world, and are super excited when it matches your own lifestyle, preferences, etc. and are maybe not totally psyched, and maybe even a little bummed out, when it is the polar opposite of how you would like them to live their lives.

But through this process I think you also get introduced to new rhythms, new experiences, new ways of moving through the world, and that's pretty cool too.

So that's what I'll focus on, because in the slightly amended words of Hannah, the wise sage, "My kid has a disability, but I'm still happy."

Saturday, June 26, 2010

Sum sum summertime

I'm long overdue on a post. Ever since school ended for the girls and the summer travel season kicked off, things have been super busy around here! Sam as you can see in the top photo is growing like a weed. He's only about 3 1/2 lbs lighter than Hannah at this point: he's a big guy! He's also a very happy, smiley guy who is now commando crawling all over the place, pulling up, saying "Uh, oh" and "Dada" and "Mama". He eats anything and everything and has an appetite that rivals the girls at their hungriest. We're having a lot of fun with him although now we're back in baby proofing mode which is a little tricky when you have older kids with tons of small chokable items everywhere. But anyway, that's a bit about Sam.

The picture of the girls was taken just before they left for one week at Grammie and Papa's house. This was the longest I've ever been away from them. I had a conference for work so my parents, who are amazing grandparents, drove all the way up to get them and take them back home for a week. Everyone had a great time and the girls did really well being away from us. I think my parents needed a spa vacation after but otherwise all was well! I definitely had a hard time saying goodbye to them; they've become such big girls, but seeing them drive off that morning, I felt like my babies were leaving.

But big girls they are, in so many ways. It really became evident how much they've changed and grown when we had their end-of-year school conference. First of all, I absolutely love their teacher and feel so grateful that the girls have had her to help shepherd them through their first school experience. It was really hard for us to contemplate the school process: where to send them, what to expect, how would they (and especially Hannah) make out. All of my fears were unfounded and in fact, my expectations totally exceeded. It's so clear that the girls felt safe, secure, comfortable and also challenged, engaged and encouraged to learn and grow at school.

And then there was the added bonus of the many physical changes and improvements they EACH made. Our former PT had told us that we would see great strides once Hannah went to school because peer motivation can be so strong. She was right on the money. Looking at the IEP goals written last winter, Hannah met almost all of them and even exceeded expectations in some areas. Some of the changes we've seen at school and at home:

-Hannah can now get on/off the potty, wash her own hands, get on/off a chair, climb up one of the stand alone slides on the playground, get across the playground grass, pea stone and even snow in her walker, eat her snack in a reasonable amount of time and then keep up with her peers on the long walk down the hallway to the door for recess, draw a picture of a person with recognizable features and other details, put on most of her clothing with minimal assistance, take off most of her clothes with minimal assistance, brush her own teeth...the list goes on and on. It's really been incredible to see how she has progressed over the past year. Of course, having the right set up in the classroom bathroom, at the sink, at the play tables...this has all given her so much more independence than she would have otherwise and we've been working hard to create these same adaptations at home as well.

And Isabelle has changed and grown in so many ways as well. She was really pushed, I think, by her able-bodied peers to catch up in some of the gross motor skills she was lagging in, as her play with Hannah didn't expose her to that. She wears orthotics because she's a toe-walker and she has always been a bit clumsy. Heading to school, she wasn't able to jump with both feet off the ground, she fell a lot when walking and had kind of an immature gait when running, she wasn't very confident climbing on playground structures, etc. She was also kind of shy and quiet and of the two girls, she was the one who cried for a few days at the start of school, not wanting me to leave her.

The changes we've seen in Isabelle:

-She can now climb, jump and run with the best of them
-She is completely independent with things like going to the bathroom, getting dressed/undressed, brushing teeth.
-She has become very social and when I would pick them up at school toward the end of the year, I often found Isabelle yelling to friends to "come play with me!" She made friends other than Hannah and separating from me got much easier.
-She is also able to write all of the letters of the alphabet, can sight read some words, and creates very elaborate and detailed drawings.

I'm so proud of all my girls have accomplished this past year, and I'm really enjoying this new phase of parenting as I watch these changes from a little more distance than when they were home with me all of the time. Now in fact, we're at the stage where being home all the time is not a good thing at all! They need to be kept busy with lots of activities. Hannah asks me every morning, "Where are we going today?" Let no moss grow under their feet!

The challenge for me this summer is to figure out how to meet their needs while also keeping Sam on his schedule. I also need to figure out how to navigate different places with the 3 of them, given both Hannah and Sam's mobility limitations. I did manage to take them all strawberry picking which I was pretty proud of. But there are a lot of outings that would just be too hard for me right now. I remember this phase with the girls, which seemed so long, where I did not venture that far with them on my own because Hannah couldn't sit well in many places and not all places were easy with a double stroller and they were still on a nap schedule. Then we got to that sweet spot where I felt like I could go almost anywhere with the two of them which was so liberating. Now we're back to being a little more homebound because of the little guy. I know this phase will pass quickly but it's definitely my challenge for the summer!

Friday, May 14, 2010

Sedation Sally

I forgot to mention that after Hannah's visit to the Comfort Zone, we came home with two doll "patients" and an IV kit (minus the sharp!) that the child life specialist gave us. Isabelle, our resident doctor and nurturer of all things big and small, immediately decorated her doll (who I've dubbed Sedation Sally) and then gave it a full medical work up as you can see in the photo. Hannah on the other hand was more interested in practicing her cutting skills on the gauze and didn't do any kind of "pretend play" doctoring with her patient. I mentioned this to my dad who said, "Well, why would she? She has to endure the real thing." Hmmm, good point.

March of Dimes: Our 5th year walking

We had a great time walking this year! We weren't sure we were going to make it, as the girls both came down with a nasty stomach bug just two days before and I was waiting with bated breath to see if it tore through the rest of the family. Thankfully by the morning of the walk, we were all fine (albeit a little tired) and the weather was cooperating as well. This was also touch-and-go, as we got a freak late April snowstorm just a few days prior, dumping over 6" of snow on our green grass and budding trees and flowers. But the sun was shining, the temps were close to 70 and everyone was healthy.

Thanks to the generosity of our family and friends, I raised over $1800! Next year I'll have to organize a team so we can have even more people fundraising (and walking) along with us.

If you were one of my donors, THANK YOU for your support. This cause is close to my heart and it means a lot to know you helped contribute to the important work of the March of Dimes.

Happy spring!

Sunday, May 9, 2010

Sedation update

Just a quick note to say thanks to those who sent along their support and to let you know that the sedation went really well, Hannah was a total champ. She was fascinated by the IV insertion and watched the whole thing (thank God for Emla cream so she didn't feel any pain). She definitely had moments of being a little anxious as there were so many people coming in and out of her little "pod"--anesthesia resident, nurses, child life specialist and when Dr. B came to test her range of motion before the procedure she kind of freaked out, afraid he was about to do the shots. But otherwise she did fine. When she woke up from her little propyphol (sp?) nap, she said, "Why didn't Dr. B do the shots?" When she realized it had already happened while she was asleep, I think she was pretty relieved.

It was a little more difficult for me...just being in a very hospital-like setting, seeing the heartrate/sat monitors again, seeing one of our former NICU nurses who was our nurse at the Comfort Zone, watching Hannah "go under"; it was definitely a bit traumatic and also made me think more about what it will be like if/when Hannah has surgery, which is a very real possibility.

But overall I think it was worth all of that so that Hannah didn't have to experience the pain of the multiple shots.

Wednesday, May 5, 2010

Damned if you do...

So tomorrow we try our first round of botax under sedation. We did 4 rounds without anything and Hannah got progressively more anxious before each time. The last time she was in tears just leaving the house and then again when we arrived at the clinic. She has also generalized her anxiety to all doctors' offices/appointments and especially exam tables which she calls "shotter tables." After this last time, her physiatrist said we should consider going to the Comfort Zone, the place at the Children's Hospital where they sedate kids for procedures that would otherwise cause too much anxiety/trauma. They have child life specialists and nurses trained in ways to reduce the stress of the experience by doing things like blowing bubbles and using Emla cream at the site of the IV placement so the kiddos don't feel it going in.

It all sounds great, right?

But there is a downside to everything.

Because she will be under anesthesia, Hannah had to get a physical within a week of the procedure. She also can't eat or drink after midnight tonight. We have to leave the house at o-dark-thirty to be there an hour before the procedure. And it's yet another doctor's appointment, this time in the hospital, and there will still be anxiety and stress as it's new and strange and different. She will undoubtedly ask many times on the ride there, as she does when we go to ANY doctor's appointment now, if she will be getting a shot. And she'll be hungry and cranky and tired because we got up so early and she couldn't eat. And who knows how she'll be when she wakes up.

The alternative?

Another round of 6-8 injections into her leg muscles without any sedation. Five minutes of screaming and crying followed by more anxiety around future appointments.

Neither option sounds so good, does it? And we get to do this 3-4x a year.

Welcome to my world.

Wednesday, April 28, 2010

Don't forget the siblings

Came across a great article posted on the Sibling Support Project website, "the only national effort dedicated to the interests of over six million brothers and sisters of people with special health, mental health, and developmental needs." I found it very timely as we've been thinking about this stuff anyway, which prompted our visit to the child psychologist a few weeks ago. I share it here so that other parents of kids with special needs, who also have other children, can check it out.

Friday, April 23, 2010

A little bit "off"

As time goes on, I see patterns of behavior in Hannah that indicate when "something's up" with her. I don't always know what it is, which frustrates me, but I can tell when she's off.

So in the past few days, here are the things I'm noticing that are a little different for her:

-She's gritting her teeth together a lot
-She's eating A TON
-When she naps, she wakes up hysterical as if from a bad dream, and then I go up and settle her and she falls back asleep again (normally she just sleeps through until she's ready to get up, and wakes up either whining a little or calling to me to come get her)
-She's more floppy
-She's more whiny
-She's more hesitant to stretch her limits (i.e. she keeps saying she's scared to reach out for the grab bar and step up onto the stool in the bathroom, something she did easily and fearlessly up until about a week ago)

I'm thinking it might be another growth spurt, and maybe those crying spells when she sleeps are muscle spasms. Not sure though. She is also going through the longest stretch ever between botox treatments, because we have a consult about selective dorsal rhizotomy on Monday and they wanted to see her when it was totally out of her system.

It's hard to see her go through this, and I wish I could do more to help her. But what I CAN do is go easy on her a bit, let her be a little more lazy if she wants to be, as she is not afraid to push herself when she's feeling good so if she needs a break, she deserves it.

Tuesday, April 13, 2010

Why adaptive programs rock

This winter, Hannah and Isabelle participated in an "adaptive" tumbling class at a gymnastics school near us, where Isabelle took a class last summer. While looking at ways to build Hannah's strength and keep her active this winter, I learned of this new program starting up and jumped at the chance to sign on, especially since it was directed at her age group and they welcomed "typically developing" siblings or buddies.

The class was ideal on so many levels. First of all, it was only my girls and two boys their age who are on the autism spectrum so it was a very small group. This really benefited Hannah, who can get so easily distracted in big, noisy groups and would not have gotten as much out of using all of the equipment and facilities in that setting. Also, the instructor is a young, energetic woman who seemed to intuitively know how to relate to each of the kids despite their very different personalities and needs. She didn't try to keep to a specific routine (different from the class Isabelle took over the summer) and while she offered up SOME structure, she also let the kids take the lead a great deal. This slower pace made it easier for Hannah to keep up with everyone and it was also great for me that the instructor was not afraid to jump right in and facilitate Hannah's participation, something I'm usually doing when we get involved in "mainstream" programs.

The full benefits of participating in an adaptive program like this didn't fully sink in until almost the last week. But one week, when the regular teacher was out sick, a substitute taught the class who was new to our group as well as to the school itself. It became clear very early on that she was not given a heads-up on how loose and low-key our class was, as she kept trying to insert structure into the routine that the 4 kids, their helpers and the teacher had created over the previous weeks. And it wasn't working out at all. I sort of felt bad for her as she struggled to get all of the kids to go through each station she'd set up: Hannah was just kind of standing around, the two boys on the spectrum were running in different directions, and Isabelle was methodically following the teacher's lead. It was a little crazy. At one point, the sub had everyone go upstairs to the stretching area (which we did every week) and she started the routine before Hannah and I could get there with her walker. That's when I spoke up and said, "Could you please wait a minute for us to get there?!" She clearly missed the point of this very special class and it brought home to me the fact that I was so comfortable with the way things were run with the regular teacher and what a relief it was to be in such a setting, where there were no outside expectations or rushing around trying to get Hannah to keep up or worries about what people would think of her. It was so nice to just relax and let Hannah enjoy herself.

I think it is so important for Hannah, and all kiddos with disabilities, to be a part of their community and participate in activities with other typically developing kids their age. But sometimes, it's really nice to be involved in something with other kids like Hannah. And it's great that siblings are welcome because Isabelle is getting just as much out of it as her sister.

Next on board for this spring/early summer: an adaptive dance/theater class!

Friday, March 26, 2010

More moving and grooving

With a little bit of help, Hannah is continuing to do some great things. B was able to install some bars in our bathroom and now she can get inside, on the stool, and get herself to the sink to wash her hands or lower herself to the potty without help (just some spotting to make sure she doesn't hurt herself!) Check her out in the video below-and a note that the spots on the toilet are just where the potty seat has banged into it-our bathroom is really not THAT dirty!!!

The second clip is of Hannah coming up the ramp from our driveway to our back door doing a side step. Usually we leave her walker at the bottom of the ramp and then get her out of the car and place her in the walker and up she goes. Every once in awhile, she decides she would rather leave the walker behind and so she walks up sideways on her own. This is SUPER because it really works a muscle group that I can't remember the name of right now, but that is pretty hard to work unless you do this kind of motion (same one that you do when you make snow angels, and a muscle group that's notoriously tight in kids with CP). And what's more super is that when she goes up this way, she has to lead with her left leg which is the weaker/tighter of the two. LOVE when she gets those great PT exercises in all by her own volition! That's what it's all about...

Monday, March 15, 2010


I think post-trauma and grief are like this: you go along feeling fine and then all of a sudden, something hits you like a ton of bricks and you could, if you let yourself, go back to the hard, sad, overwhelming place that you were in when you first experienced a loss. It's hard to know what will set it off, but it's like your grief and trauma have these land mines scattered around your life and sometimes you unknowingly step on one and set it off.

The two triggers that got set off most recently:

The girls' (and especially Hannah's) medical files: I usually avoid reading through them unless I need to. Recently I had to go digging in Hannah's because we are seeking a consult for selective dorsal rhizotomy (more on that another time!). All I had to do was look at the copies of her quick brain MRI and I was immediately launched back to that day in the NICU when they told us about her PVL (brain injury).

Any meeting with a new therapist/medical professional: We are looking into getting a new PT (more on that, too, some other time!) so we had a consult with someone last week. Despite the fact that this PT was a very warm, kind, and seemingly knowledgeable person, I felt naked as I introduced her to Hannah, anticipating her judgment like we were getting a CP diagnosis all over again. I could barely hear her positive comments about Hannah and focused instead on what she said about "lack of protective reflexes" and "may not stand independently."

I can bounce back pretty quickly from these triggers but it still surprises me, the strength of their power.

sometimes all you can do is breathe

I took a Hatha yoga class with a good friend last weekend. I haven't done yoga in a looong time. I'm still sore! I realized how out of wack my body is from my pregnancy with Sam. I was proud of myself for not trying to push through all the poses and be comfortable with taking the easiest option for many of them. And it was good to try to relax although it was hard for me to turn my brain off (probably shouldn't have had that second cup of coffee right before class!)

One thing the instructor said that stuck with me. She was reminding us to stay present, focus on our own experience, and breathe. She extrapolated from yoga out to the rest of our lives and the various things that might cause us anxiety and stress. She talked about how in the midst of those moments, sometimes the most important, and only, thing we can do for ourselves is breathe.

This really resonated with me. I've had those times when I am so overwhelmed by one thing or another and I am barely breathing. It's a shallow, chesty breathe that just barely sustains me but does not energize me in any way, and might even make me more anxious or stressed. This instructor reminded me of the power of a deep breath, even when it's the only thing you can do.

So here I go...gulp...BREATHE.

Tuesday, March 9, 2010

Moving and grooving

Hannah has been working so hard on this for such a long time. I'm so proud of her!

Wednesday, March 3, 2010


Our guy will be 6 months old in 2 days; where has the time gone?! He is such a fun little person to have around. He has a really great demeanor; he's very happy and easygoing and can entertain himself well. He LOVES his big sisters and is happiest when he's near them and watching them play. He's sitting up on his own now, rolling all over the place, and making tons of baby cooing sounds. He has a tooth, drools constantly and has been eating solids since he was 4 months old because he is such a big strapping young man! (I'm guessing around 19lbs but we'll know for sure in two weeks when he has his next well-baby appointment).

Anyway, I spend so much time on this blog talking about the girls, and mostly Hannah, but Sam deserves a post of his own because he is very much a part of our happy family of 5.

seeking guidance

I just got an appointment for us to see a child psychologist. Having a degree in counseling myself, I feel equipped in some basic ways to help myself and our family work through our thoughts and feelings around Hannah's CP, but as she becomes more aware (and Isabelle, too), I think we could use a consult and some more tips/tricks. Especially because it's always easier to counsel someone other than yourself, and things are also different when it's your own kid. And, we are considering some surgical options in the next year or so, which is going to up the ante in terms of how Hannah's CP affects all of our lives.

I'm looking forward to our appointment: first B and I will go, then hopefully the girls will have a session as well. But I'm also anxious: every time I find myself in a "therapeutic space" I do a lot of crying. It's like I know I can let my guard down and I just can't hold back the tears. I know there's nothing wrong with that, but I am a bit afraid to let it all come out, as it's been awhile since I've done any down and dirty grieving and it takes a lot of energy. But I guess if it has to come out, it will, and then hopefully there will still be time after the tears stop to get some good information, suggestions and ideas.

My biggest concern is finding a way to help Hannah accept her disability without having it crush her self-esteem. I remember having pretty wounded self-esteem myself as a teenager, and I don't have a disability. I envision tough times ahead for our girl and I want to do all I can to ensure she makes it through those challenging years with a strong sense of self and some skills with which she can handle the insensitive people and situations she will surely encounter.

My second biggest concern is how all of this affects Isabelle. There is no doubt that Hannah gets more attention and there's not much we can do about that. I can also see that this extra attention does not go unnoticed by Isabelle. I would love to find a way to ensure that despite this, Isabelle still feels loved and listened to and cared for in all of the important ways, and does not resent Hannah too much.

My third and most recently emerging concern is how Hannah will react, if at all, to Sam's increased mobility. He is sitting up, poised to crawl and will be walking before we know it, all with the ease and smoothness of a typically developing child. I wonder at what point Hannah will see this happening and realize he can do things she can't do, even though he's much younger than her. I want her to know that she will always be the big sister who can teach Sam many things, even if he can move his body more easily than her.

The poor psychologist we have our appointment with; I think I'm handing her a pretty tall order: ensure the total psychological well-being of all of my kids, please. With a side of fun and happiness sprinkled in.

Thursday, February 18, 2010

Cut me some slack

Today after I picked up the girls from school, I was driving out of the parking lot when I heard a whistle and saw two people running toward me, trying to get me to stop. I immediately realized that I had forgotten to put Hannah's walker in the trunk of my car before driving away.

This is the second time it's happened in a month.

I also ran over her walker a few weeks ago because I did the same thing at home, but that time I put the car in reverse and just drove right into it.

I think I must be losing my mind. Or just acting like the frazzled mom of a special needs kid who has 2 other kids and a part-time job and is trying to keep her head above water.

Either way, when I put the car in reverse to retrieve the neglected walker today, I was totally embarassed and said sheepishly to the person who had flagged me down, "I can't believe I did this AGAIN." Her reply, "First of all, she NEEDS her walker and second of all, someone could come around the corner and pull right into that spot and run it over." (Little did she know it has already survived one such encounter). It was hard to tell if she was truly giving me a hard time or kidding around and lately, I take everything personally (being super-sensitive seems to be a major by product of sleep deprivation, at least for me). I kind of think it was the former, because as I drove away, I felt like an even bigger heel than I already did.

I know it's completely ridiculous that I can't learn my lesson about putting the walker in the car. I also think it's a symptom of what's going on in my world right now. I've been trying hard to be gentle with myself and not beat myself up over this and my many other shortcomings. It would be nice if others could cut me some slack as well.

Saturday, February 13, 2010

Reclaiming winter

I think I have a post from last winter with the same title, posted after we took the girls skiing for the first time. Well, we went again this year. Actually, we went cross-country skiing one weekend and downhill two weekends later. Cross-country we did on our own and downhill was with the help of the local adaptive skiing program, which totally rocks. Both activities were so much fun and made us yearn to go again. We still need to figure out the equipment thing and we realized that at this stage, both girls are such beginners that they really just need some time to stomp around on skiis in the backyard without us shelling out a whole bunch of cash for lessons. We just need to get some gear for them. Of course for Hannah, going downhill is much easier if she has the adaptive equipment offered by the program, but even for her, just getting her on her feet on skiis is exciting for her and a good experience. It's nice that at this early stage, both girls are almost equal in their abilities (except that Hannah can't stand on her own unless her poles are firmly planted in the snow)! So there is not a great sense of someone being left behind. I love that there are so many options for Hannah especially with downhill as she gets older. If she is interested and into it, she can probably be an independent skier some day, with outriggers or a snow slider. Exciting to think that we might truly be a skiing family, despite Hannah's CP.

So if you're a snow-loving family and have a kiddo with a disability, don't despair. It's amazing what opportunities are out there. Where there's a will,there's a way!

Tuesday, February 9, 2010

Mean kids

I have often said that I worry about what Hannah might face when she gets older, because I know kids can be mean. But up until today, I have not witnessed this meanness and have instead been pleasantly surprised by most interactions we've had with other kids. I have come across curious kids, interested kids, kind kids, kids who are oblivious to her difference, kids who are drawn to her because of it...but I had not yet witnessed what I would classify as a mean-spirited kid.

The girls' preschool is an early education/intervention program which is housed in a classroom in the elementary school. So we often encounter older kids in the hallway or on the school grounds. Depending on the time of day, sometimes we can get caught in the middle of a major traffic jam of kids walking in the halls. Today as we were leaving their class, another class of older kids (probably around 8-10 years old) was in the hall. There was the usual gawking at Hannah that happens, especially because when there are that many other people around, Hannah gets really distracted and tends to stop in her tracks and stare at them like a deer in the headlights. But then one boy leaned into his friend and said, "Hey, look at THAT," as he kicked at her walker wheels with his foot.

I looked right at him and said, "This is Hannah." And he said, "What's THAT THING for?" in a loud and not-so-nice voice. And I said, "It's her walker, and it helps her to get around." And he said, "Why does she need THAT?" and at that point, the snake of kids he was a part of continued on its way and he was past us and walking down the stairs so I didn't answer. I also didn't answer because I thought I would not be able to do so calmly anymore, as his nasty tone and inquisition was starting to get on my nerves.

In so many other ways and a different tone of voice, this kid's questions and comments would not be so unnerving. But it was the WAY he said it that really got under my skin. I had the urge to smack him upside his head. I also wanted to know where his teacher was, and why she wasn't stepping in to use it as an opportunity to teach some manners and respect for differences.

This little interaction soured my whole day. It made me frustrated with Hannah as we were leaving the school and she was refusing to walk because she didn't want to go home. It made me frustrated with her again tonight when she was difficult to stretch. And it made me frustrated with myself because life is so crazy busy right now and I feel like we have so little time to do for her what we need to help her progress.

So there it was: our first mean kid.

I'm sure it won't be the last.

Thursday, February 4, 2010

Conversations you don't hear in every house

I was helping Hannah practice walking with her forearm crutches tonight (which she asked to do) when she turned to me and said, "Mommy, I just REALLY want to walk without any adult's help. I have a walker and crutches and glasses, and it's taking SO LONG for me to learn how to do it on my own." And then she added, "And my belly hurts, too."

I'm so glad she added the belly hurting part because it made me realize that for Hannah, at least right now, she sees her limitations as a frustrating obstacle like a belly ache, and she doesn't attach all the other emotional baggage to it that we (the adults in her life) all do. I know this won't last forever but I'm glad that for now, this is where she's at with it.

It's so tempting to respond to these comments by saying, "Well, if you work hard enough, someday you WILL walk on your own without anyone's help" because this may not be true, and it won't be because she didn't work hard enough. So I try to tell her that we are working on getting her stronger and more independent using her walker and then maybe someday, using crutches. And I acknowledge that it stinks and is frustrating that she can't do it on her own right now.

I so admire her four year old approach to her disability, because from the outside it does not seem to cause her to act victimized, defeated or discouraged by her limits. It is simply the way it is for her. I want to try to be more like her.

Thursday, January 7, 2010

It's the little things

Watching Hannah move through different stages of development, these little things pop up now and again that remind me of just how much of an impact her CP has on every aspect of her (and our) life. And a lot of the time, it's these little things that can really get me down much more so than the big picture.

The big one lately is shoes. Shoes are a MAJOR issue in our house. First of all, finding shoes that can fit over orthotics is no small feat. And then there's the fact that sometimes very independent four year olds don't WANT to wear their orthotics. So it's nice to have a pair or two around that can work without them, for those hanging around the house days when we just want to take a break from strapping her feet into the hard plastic forms. But that's another feat of the feet because Hannah's are so narrow and small, and because when she walks, she doesn't plant her feet firmly on the ground and they just kind of float in space sometimes. So if a shoe is not totally snug on her foot it falls off. And if it doesn't have a good tread on the bottom she slides all over the place. So most slippers are out.

When you look around at the average preschooler (at least in our neck of the woods, anyway) one of the most popular shoes are those really cute kiddie mud boots with fun prints of animals or other cool things on them. So what does Hannah want to wear? Without her orthotics, they are a total no-go because they fall off. And with orthotics, she can't fit into mud boots at all. So in the land of "mud season" we are very ill-equipped.

Then there's dress-up shoes. All kids love to play dress up and tromp around in their parents' shoes. Hannah just can't do it. She tries, oh she tries. She has tried on almost every pair of my shoes in an effort to find one that will stay on so she can walk around in them like Isabelle does. But she can't keep them on her feet long enough to give it a try. We also have a box of plastic dress shoes B got at a yard sale. Silly, fun high heeled shoes that are made for kids to play with. Again, Hannah can't keep a single pair on her feet. Thankfully in this box of shoes is also a pair of red sparkly buckle shoes just like Dorothy's in the Wizard of Oz. Without orthotics they fall off, but with orthotics they fit well enough that she can stomp around the house.

She is NOT happy at all at having to wear her orthotics with these sparkly dress up shoes. I don't blame her. It sort of defeats the purpose. Dress up is all about becoming someone else and leaving your regular orthotic wearing self behind. But today I convinced her that the best way to experience the magic of these shoes and keep them on her feet was to wear her orthotics, and how wonderful that the shoes fit with them on. She begrudgingly agreed and now wants to have them on 24/7.

Today it's shoes, tomorrow it will be something else. These little things are hard in a big way.

Sunday, January 3, 2010

new year's resolutions

The holidays have come and gone and I'm ready to start the new year off with a few resolutions:

-be more patient with the girls: since Sam's arrival, I find myself more in baby mode than in preschooler mode and I often get snappy with the girls when they are just being typical 4 year olds. I'm going to try harder to remember this and enjoy them more at this amazing phase of intellectual growth and development.

-try to get my body back: being pregnant took a big toll on me this time around. Not just gaining weight, but various aches and pains that are still lingering. I also got incredibly out of shape. I'm not going to set myself up for failure by setting the bar TOO high, but I would like to feel stronger, especially in my back and legs. I'd also like to try to encourage my stomach muscles to reunite if possible, as they separated in a BIG way and thus, I am saggy and baggy and very weak in my core.

-get back on the train of making our home more accessible for Hannah: the ramp was a great step, but there's more to do. We still haven't gotten the grab bars for the bathroom and are in need of more stools of various heights. She deserves this added bit of independence, so we'll try hard to make it happen soon.

-re-energize our exercise and strengthening routine for Hannah: another thing that fell by the wayside a bit while I was pregnant and then with Sam's arrival. Now that it's winter and it's harder to get our therapy in naturally as we're out and about, we need to get more creative about ensuring Hannah stays on top of her game. Especially since we're contemplating SDR in the next year, we want to build up her strength as much as we can and also keep her tone in check as she goes through growth spurts. There is an endless amount we could do so again, I want to be sure I don't set myself (or her) up for failure, but I do see some areas where we can make realistic changes and improvements. For instance, I got lazy in not having her do things for herself. B is much better and more patient about this, but I've been taking the shortcuts and not taking time to let Hannah try to dress herself, get herself into and out of her chair, etc. Of course, sometimes we need to move super quickly and I'll need to step in and do it myself, but I'm going to make more of an effort when possible to let her do as much as she can.

-hand off Sam more to B so I can play more with the girls. It's so easy for me, a nursing mom, to take care of 99% of Sam's needs. But B is a great and capable father and I need to remember this and let him do more, especially now while Sam doesn't really care much who is holding or changing him and while the girls DO care and want as much of me as they can get

-and my most important resolution: accepting that no matter how hard I try, there will always be more that needs to be done: more therapy for Hannah, more attention to give the girls and Sam, more projects around the house, more time for myself and my husband. I'm going to work hard at being "good enough" instead of super mom. This one will be the hardest....

Happy 2010.