BEAUTIFUL DAY
March 2, 2015

We had a rainy Sunday so Cole and I took advantage of a break in the rain and ran a couple of errands (only places with underground parking in case the rain returned), and then spent the afternoon nestled in our warm little house goofing around together. My husband is in Austin, TX for a conference so we’re on our own again. We had him home for a few days after his trip to Wales, but he left again Saturday before we woke up.

Cole and I did a little cooking, laundry, and started working on an art project. Then he, in true teen form, wanted to spend some time alone his room watching a movie on his own. I still marvel at this development, with him wanting to have time on his own, but I’ve come to enjoy it myself. It gave me a chance to do a little straightening up and to paint my toes (without the boys feigning poisoning from the smell!).

We had a few conversations about the upcoming surgery and he seems to be okay with it. He shared with me that he does feel twinges of pain in his left hop, the one that’s completely dislocated, and seemed relieved that it could be fixed. I don’t know how well he remembers the last surgery a few year ago. I think once the casts came off, we all put it behind us, quickly turning the focus to getting back into walking and standing.

Now, as we contemplate this next surgery, some of it is coming back to me and I’m working on trying to put things into place to make the summer go a smoothly as possible. Both my husband and I will try to work from home part of the time, and we’ll need support as well. We also want to line up some fun things for Cole so that he’s not just relegated to watching TV. It’s tough because he can’t ride in a car, sit in chairs, or be easily carried about when he’s casted from hip to toe with the dratted bar between the ankles. The situation calls for creative thinking!

We’ve got a few months…time that will fly…but this time we know what to expect and I fully intend to be prepared for anything, and to make it as easy on Cole as I possibly can.

His big focus is our upcoming ski trip. It’s the third year we’re converging on Mammoth Mountain for a family ski weekend. This year there are 24 of us going. Six families! Cole’s so excited to race down the mountain and to spend evenings with friends. He really loves the thrill of skiing and the Disabled Sports Eastern Sierra has a fantastic adaptive ski program with volunteers willing to take him to the top of the mountain so they can zoom back down. I’m glad he choses to focus on the positive things and now dwell on something that could be frightening or upsetting.
He’s a pretty reasonable, practical kid. Oh, and amazing!

I love having quiet days with the boy. The two of us seem to share the same sensibility about weekends and rainy days.

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SEE ME, FEEL ME
February 23, 2015

My husband tends to keep things close to the vest. He’s not as openly effusive as I am and he doesn’t readily share his thoughts about our family life, preferring to keep them private. We’re different that way. I think he internalizes things a bit too much, and he thinks I share too much – somewhere there’s a balance and it seems we both have different needs in terms of the kind of support we want from beyond our family of three. Strangely, despite the disparity in our coping, it works. We always have each other. In a rare share, he wrote the below piece for a fundraiser our school puts on each year. Sadly, he was in Wales visiting family so he missed the reading. Much of the audience was brought to tears and it was well read by one of other dads, who, besides being a talented orator, also completely related to the experience which brought a great deal of heart to his reading. I’m sharing with permission…

As written by my husband, and read by Benjamin Bratt at our annual CHIMEapalooza Event:

If you saw my family walking through a mall when my son was a baby, we looked just like any other family (my Hollywood good looks could be distracting, but otherwise we looked like your typical family.) We had the stroller and the packed diaper bag, but if you rifled through it you might see syringes and gravity bags for tube feedings next to the wipes and cloths.

As my son got older and outgrew the stroller, our outward profile changed, a bright orange wheelchair replaced the stroller, and friendly smiles were replaced with odd stares as we walked through the mall. It seems the general public is not accustomed to seeing children in wheelchairs out and about. Kids were generally curious and often asked questions, “What happened to him?”, “Why is in a wheelchair?”. To this my wife would smile at them, sharing “This is Cole. He’s four. How old are you?”, or explaining “Cole’s muscles work differently than yours and needs the wheelchair to help him get around.”, or “He understands everything that you are asking, so you can talk to him and you’ll see his answer with smiles.”. And on cue, Cole would flash is light-up-the-planet smile, and make a friend.

Yep, kids were a breeze. More often, adults would lock gaze on him and practically walk into a pole, mouth agape, like they couldn’t figure out how a kid in a wheelchair managed to find his way out of the house. For me, still wading through the newness of parenthood and the rawness of my own fears for Cole’s future, their judgmental stares caused me to try to protect my family by glaring back at them in my attempt to communicate to them that their stares hurt. They made us feel somehow less than, not welcome in public, and so much worse. I raged inside because I wanted to protect my boy from that feeling. It broke my heart to have people look at him like that with so much intensity, but actually not see him at all. Not see the bright, funny, beautiful, kind, open child that was sitting right in front of them.

Over time it just ground me down, having to summon that glare, giving so much power to the confused and small-minded reactions of passers by. Simultaneously Cole started the CHIME infant toddler, and then the lab pre-school, and finally CHIME Charter. We became part of welcoming community so much bigger than our little family, our tribe as my wife calls it. I learned over time that no matter what or particulars, we all face challenges and we all feel the weight of our hopes and dreams for our children. Most importantly, everyone has good days and bad days.

And something else changed. When I caught those stares, I started to forget to glare back and instead smiled. If they continued to stared at me like they couldn’t process what we are, I would smile just like my son taught me to. My smile is not as open as his, not as warm or as full of life, but I do my best. Plus, now I say hi to everyone I pass and I hope that my smile and my hello communicate at least a sliver of, “Hi. We like the mall, maybe more than we should and we are pretty happy to be here today. We may not be exactly like you, but we are not so different either. We hope you have a good day, and we hope that this is a good day for us too. Oh, and hopefully I’ll find a cool sweater – on sale!”

Dan
Father of Cole in 7th grade

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RAININ’ IN MY HEART
February 18, 2015

The past few days kind of took the wind out of my sails.

We were scheduled to have a neurology appointment last Friday, which was confirmed by robocall from CHLA on Wednesday. We arrived on time, checked in, sat for a while, and then Cole was called for the usual weigh in, temperature, blood pressure intake and we were then led into an exam room. We again sat for a bit until someone came in to inform us that our doctor doesn’t work on Fridays anymore. She changed her day. They had left a message at our home mid-Friday morning. Not particularly useful since my husband and I both work, and neither one of us checks the home messages until we arrive back at home at the end of a weekday. Why do all of the forms ask for alternative phone numbers if they don’t use them? Mind blowing…

So they kindly gave us the first open appointment, Tuesday, her new day, at 12:15. We accepted the appointment. Sadly, having missed half of a day at work Friday, I couldn’t attend this time. We also had a morning orthopedist appointment, which I did attend. So no school or work for the boys. Frustrating but both necessary appointments.

The orthopedist appointment left us with hip repair/replacement surgery on the books for June, along with some other smaller surgical procedures that will leave Cole stronger and better able to bear weight, walk and sit more comfortably. This endgame the most important thing to remember during the six or so weeks of full leg casts with a bar between the ankles during the summer. This will be the second “bummer summer” Cole’s had in four years. He had similar surgery the summer before 4th grade.

Oh how I wish I could spare him the surgery and recovery. The first couple of weeks are the worse in terms of managing pain and finding the best ways to maneuver the boy with his casts and bar around the house and keeping him comfortable. Then the boredom starts to set in. Once he’s feeling better and off pain meds, the trick then becomes to find ways to keep a sedentary him entertained.

The neurology appointment happened, and despite videoing some of his seizure activity, it turns out that there’s not much that can be done. We can change medication to something that has more significant side effects, including potential liver and pancreas damage (so regular blood work) or contemplate an implant device that can be effective at calming seizure activity, but takes up to two years to get there, or leave him on his current medication. Given the now upcoming surgery, my vote goes to status quo. It doesn’t sound like the other options are better at the moment so my instinct is to wait until the orthopedic event is over and then get more into the brain activity.

Can someone just tell me when enough is enough for this boy? He’s been through so much, and takes it all in stride. It would be nice if something just went easily for him sometimes.

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I WANT ANSWERS
February 13, 2015

I woke around 5 am this morning to Cole having a seizure in his sleep. It’s unusual for him to have seizures in his sleep but this is the third one this week. Oddly, we’re seeing his neurologist this afternoon to discuss the escalation of his awake seizures, and now the nighttime ones too.

I don’t know what effect puberty, hormones or growth have on the seizures but I notice them increase when he’s having a growth spurt as well as now that he’s hit puberty. They’ve changed in their expression too. It’s unsettling to say the least. In my head I know that they’re relatively harmless, and that he has little to no awareness of them. To witness them, however, is a bit unsettling. It also kills me that he has to experience them.

While he may not be aware of them while they’re occurring, he does often have after effects that linger, which I think he must sense. His color fades completely, and sometimes takes a bit of time for the flush to return his cheeks. He sometimes has mild after shocks, shakes and shivers, and he’s often dazed just following a seizure. My tendency is to continue whatever we were doing or saying so that he doesn’t spend time thinking about the cause for a lull. I don’t know if it makes sense but in my mind it does. I generally just feel helpless that I can’t make them go away.

Most of the medications for seizures have a lot of nasty side effects, including liver damage. He’s been on a medication that has few, and of those few, where he seems not to experience any. But it’s not working that well now and my understanding is that simply raising the dosage ceases to work after a time, and we may be at that time. I worry that we may have to start considering alternatives, most of which are not all that great.

It’s reassuring knowing we might have some answers or insight today. The way my mind plays, the layers of what ifs pile upon each other and start to melt into one big fright. I want a little peace for that beautiful brain of Cole’s. And for mine too.

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I STILL REMEMBER
February 12, 2015

While I’m not big on the whole Valentine’s Day big wow romance thing, it is a day I like to honor people I love with a little something extra. I like to think I spread the love pretty well throughout the year but it’s fun to have an excuse to do a little something more. This year it’s a Saturday night and our sitters are all partnered up and celebrating on their own so I’m pondering ideas for a post-child-to-bed with my husband. We need it…I crave it…(and I’m not just talking about sex…)

Sometimes the demands of having a 24/7 child, full time job, and little sleep leave little to no time or energy for connecting with my husband. Often our conversations are focused on the basics: How is the Boy? Did he have a good day? Homework? How was your day? What’s for dinner? Then, bath and bed. Day over. Not a lot of time left for romance or energy for deep, thoughtful conversation.

It makes me long for the days when we were only two (not that I would trade our son for anything). When just being a couple was enough. We often spent weekends seeing movies, cooking together or trying new restaurants, seeing live music and friends. We were carefree, laughed easily, found joy in the simplicity of our life. Like most couples before they enter parenthood, we had the privilege to focus our attention on just ourselves.

The struggle with having a child who has special needs, particularly when the child is as dependent as Cole, is that all of our focus and attention is devoted to him and it’s constant. Everything else comes second, third, and never. Childcare is harder to come by because some of the needs are more specific. With Cole, we need someone who can lift and transfer him from chair to chair to bed. It rules out grandmothers…

We don’t have the luxury or freedom to do things like a regular date night where we can reconnect and remember. We try to grab moments when and where we find them and we appreciate these treasures, but sometimes if feels like they are few and far between. It’s often easier to for one of us to plan a night out with friends, like my regular Mom’s Night Out, or his recent camping trip with the guys, because there’s not a sitter issue, but it doesn’t solve the need for togetherness. Strangely, too, it sometimes feels like when we’re running through days and weeks without that time, it somehow loses its importance. We forget how great it is to snuggle up together and giggle about silly things, or share a bottle of wine over candlelight. But I still remember…

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CIRCLES
February 11, 2015

One of Cole’s hips turns in enough that it effects his walking when he’s using his gait trainer. The displacement makes it seem like one leg is shorter, and it causes him to turn in circles when he walks. Without support, it’s hard for him to walk straight. As his body has grown, it’s gotten progressively more noticeable when he’s walking, partially because his step has become stronger. His physical therapist suggested we try a lift in his shoe to try to offset the hip.

Light bulb going off! Makes perfect sense, and a fairly simple solution.

So I found a pair of sneakers that are wide enough to fit his orthopedic braces, and sent the left one off to Chicago to have a special lift added to the shoe. I can’t wait to see if this works. Cole’s thrilled about the idea, and is excited to test it out. He wants nothing more than to be able to man the gait trainer without having an adult following him around as closely as they currently do (to make sure he doesn’t go in circles). It cramps his style…

I don’t know why it never occurred to me before. I have an aunt who has a lift added to one of every pair of shoes she owns because a young teen she broke her leg and grew at the same time, leaving one leg shorter. It’s not a wholly uncommon thing. Especially for people who are confined to wheelchairs and sitting and who have cerebral palsy. Hip displacement is commonplace. Cole’s already had a repair surgery and sadly will likely face a couple more as he grows and his hip becomes more turned, despite interventions.

I wish we could solve all of his orthopedic needs as easily as the shoe lift, but I’m happy to take what small victories come our way. I’m very optimistic about this and can’t wait until the revamped shoe arrives back home to its awaiting owner so he can walk the walk, wherever it takes him, more directly!

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DON’T WORRY BABY
February 2, 2015

Cole and I both apparently have the flu…influenza A. He has it much worse than I do. It came out of nowhere and hit him like a ton a bricks. He was seemingly perfectly fine Saturday and woke up Sunday with some aches and then raging fever. Now his head is full of flu, he’s contending with post-nasal drip (which is hard for him and ends up upsetting his stomach too) and a very stuffy head. Fortunately, it’s not settled in his lungs and his blood oxygen is good.

We both started Tamiflu this evening…What fun. Not exactly high on my list of fun mother-son activities!

The worst part for me is how miserable he is. He can’t articulate exactly what feels badly. I think his throat may be sore, but he doesn’t respond with any definitive affirmation. He hasn’t smiled once today…He’s a kid who smiles a lot and whose smiles mean things beyond simple joy. Nary a grin or even half smile. today It’s bad when there’s nothing worth smiling about (even when I bumped my head in the car which usually elicits huge belly laughs!). (I sometimes bump my head pushing his wheelchair up the back ramp into the car…I don’t bend down quite enough and wham!).

Times like this are when I feel most helpless. I can take care of the symptoms I am aware of and do my best to make him feel comfortable but without any feedback it’s hard to know if all of the needs are tended to. It’s hard to know if there’s more I can be doing or something special he wants from me. I’m honestly not sure he always knows exactly what hurts or what’s just some of his normal ache. He’s so used to the tire comes from working hard in P.E. and then standing in one or two classes. He used to the soreness in his hips that comes from sitting in a wheelchair all day. I’m certain he could differentiate the ache that comes from this flu from his everyday aches.

But I don’t know…which is where the helpless feeling comes in. I can only assume things and try to help his doctor assume things better than I am. I wish I could simply him tight and wait out the flu with him and that it would be enough to comfort him and make him feel better. But it doesn’t…

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THE LAST SONG (Series – 2)
February 1, 2015

I’ll try to do this at the end of each month. Although the first post was mid-month, and included everything to date, this one is just January so there may be some duplicates. From here on out however it will be monthly listings. I’ve come to realize that songs filter through my head constantly. Someone says something and it triggers a song in my head or I notice something that peaks my interest and a song too accompanies it. The same happens with the naming of each post. Most often as I’m writing the song is revealed. Sometimes I have a song title that actually informs the post too.

1. NEW YEAR’S DAY – U2
2. LOOK AT GRANDMA – Bo Diddley
3. WHEN YOU’RE NEAR ME I HAVE DIFFICULTY – XTC
4. SUNDAY MORNING – Johnny Cash
5. I AM THE DJ – David Bowie
6. BLUE CHAIR – Elvis Costello
7. I READ A LOT – Nick Lowe
8. THE LAST SONG – The Foo Fighters
9. LOST IN THE SUPERMARKET – The Clash
10. DON’T STAND SO CLOSE TO ME – The Police
11. WHEN I WRITE THE BOOK – Nick Lowe
12. ALL BY MYSELF – Eric Carmen
13. LOST IN THE SUPERMARKET – The Clash
14. IN MY LIFE – The Beatles
15. YELLOW – Coldplay
16. IN MY ROOM – The Beach Boys
17. LOST IN THE SUPERMARKET – The Clash
18. KID – The Pretenders
19. DON’T STOP ME NOW – Queen
20. ELEANOR RIGBY – The Beatles
21. ALL YOU NEED IS LOVE – The Beatles

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ALL YOU NEED IS LOVE
January 31, 2015

I read an interesting article today. A woman, who has a son with cerebral palsy, was addressing a group of eighty or so physicans, speaking from the parent perspective of what it’s like to raise a child with special needs. There was a Q & A session after her talk and one of the doctors asked an intriguing question. It’s actually a question that could apply to any parent, but in some ways is more pointed be posed to a parent of a child with disabilities.

The question was, “What do you wish you had known, or had been told, when your child was born – and what would advise someone just starting out on a similar kind of life to yours?”

As parents to be we get all kinds of advice from all kinds of different resources but I can say from pre-parent experience, no single piece of advice I received could have prepared me to the parent of a my son. I didn’t have any friends who had children with special needs. I knew a few people who had children on the spectrum, which is its own set of challenges, but none with kids who had involved physical needs like Cole.

You jump in. It’s terrifying.

Cole was in the NICU for five weeks. During the first couple of days, we relied on the tremendous NICU nurses to guide us. Once he was at a point where we could handle him a little, albeit still connected to a barrage of tubes and wires, we were encouraged to hold him, and even change his diaper. It was pretty crazy but at the same time, it was what new parents should be doing so it felt empowering and connective.

The NICU nurses were the ones who taught me how to use the hospital grade pump so I could express milk for Cole. (Fearing for the worst, the hospital breastfeeding coach avoided me so I initially thought I wasn’t going to be able to provide breast milk for him). Knowing he was being provided good nourishment made me feel connected to him too, even if he was receiving by tube, not boob. And it too felt like something typical moms would be doing.

We were fixtures in the NICU those five weeks. We’d go home to sleep and shower and return to spend the day with Cole. During those weeks we learned a lot about him and about some of the considerations we had to make when he came home. The NICU nurses armed us with confidence that we could manage this on our own and a “just do it” kind of ethos that we still take to heart.

We got home, we fell into a crazy routine between tube feedings, pumping, and trying to sleep, my husband and I moved through the next six months until Cole was sleeping through the night and on a more regular patterned feeding schedule. I stopped pumping, having well stocked the freezer with enough milk for a few additional months…and we started to breathe. We were parents. We had an amazing child who brought joy to our lives.

I don’t know if any specific advice could have actually prepared me for being his mom had I known he would be different before he was born. I feel like knowing this would have made overthink everything, rather than letting things flow organically.

If I were to give someone who is starting this journey advice, it would be to breathe, listen to your heart, and to love unconditionally. Embracing the joys makes the sadness and fear fade.

Throughout my journey, one gift I’ve found more valuable than anything is the community we’ve built. There’s great collaboration, advice, and support. More than anything, there’s understanding, acceptance and love.

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DON’T STOP ME NOW
January 29, 2015

We had Cole’s IEP today. The IEP is our annual review of educational goals that we, together with Cole’s team (which includes speech therapist, occupational therapist, physical therapist, teachers and school administration), set each year. It’s a bit more involved than that but in general its purpose is to ensure that the necessary services are in place to help facilitate his access to the curriculum and support his needs. All in all today went well and the process was collaborative and informative, with what feel like achievable goals that all, in one way or another, tie to improving and expanding his communication skills, which we feel is vital to his success in school, and in life.

I left the IEP feeling positive and as I drove to work I continued to think about the morning. Despite the process and conclusion of the IEP being positive, it also strangely serves as a reality check. In order for it to be successful and appropriate, we have to accept that some goals from the previous year were not met and that even though we believe that Cole could have, should have achieved them, he did not. There are so many factors that play into his success. Some he can control and some that are out of his hands.

The effort that is required of him to construct even a small sentence or find specific fields in his Tobii (the eye gaze voice output device he uses to “talk”) is considerable and if he’s distracted by a friend or sound or himself, starting over makes the process that much harder and after time, that much less interesting to him.

Motivation seemed to be a running theme. Like most kids, when he has an interest or curiosity he can be quite adept at finding the word or words to communicate. When he’s relaxed and no one is paying too much attention to him, he can quickly find things on his Tobii, or can say actual words. There’s no stress or pressing need. However, when pushed to a task or asked to find specific words or phrases on Tobii, he seems to have trouble focusing, or worse, doesn’t always want to, and therefore does not try.

In addition to highlighting his strengths, the IEP shines light on his weaknesses and brings some of his limitations to the forefront. In our family, we tend to lead with hope. We have instilled the belief that he can do anything he wants to do as long as he tries, or as long as we can figure out a way that works for him. But sometimes we’re reminded that despite our best efforts, despite his best efforts, that may not always be his truth. It’s a hard thing to have to face and accept the realities of a life so young. It’s not always easy to recognize that as amazing as Cole is, there are going to be limits. Limits we intend to stretch and expand as much as possible to ensure that his life is rich and full, and that he’s the best Cole he can be, but limits nonetheless.

That’s when the tears flow…

Posted in Family Life, Life, Middle School, Motivation, Optimism, Special needs parenting | Tagged: , , , , , , , | 1 Comment »

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