This morning Cole had a strange reaction to our discussing two upcoming parties we’ve been invited that somewhat conflict, more like overlap, and as he grew more and more upset, I was both struck by how ridiculous his reaction was and by how poorly my every attempt to calm him down. There’s nothing worse than starting the day off with tears and confusion.
It’s one of those times when I’m reminded of how hard it must be for him not to be able to express himself adequately, and how hard it is for my husband and I to always guess correctly. There’s so much assuming when dealing with Cole and his communication. In the instance this morning, I think he must have misheard, or jumped to a conclusion in what he heard, which upset him, and from that point he was fully committed to his reaction.
Honestly, I cannot imagine not having the ability to talk. I talk to myself. I talk to Cole incessantly – a habit I developed when he was young. I talk. As a kid, my parents joked that if we went on a long road trip, they could literally just sit back and I’d talk continuously throughout the whole journey, however long it may have been, often without noticing that no one else was joining in. My brother would immediately fall asleep, and I rambled.
It pains me to know that more often than I’d like to think, we’re missing the real point of what Cole is feeling, wanting, or trying to communicate. It also saddens me that he cannot always communicate a question to clarify something, or that we cannot adequately suppose that there is a misunderstanding or confusion. Even with the support of his communication device, it can be difficult for him to clarify his understanding or needs.
And of course, I constantly wonder what’s going on that beautiful brain of his. His inability to verbalize or vocalize his thoughts has no bearing on the thoughts running through his head. If I could have a super power, it would be to read minds, more specifically, to read his mind.
Posted in cerebral palsy, Conversation, Family Life, Life, Special needs parenting | Tagged: cerebral palsy, conversation, differently abled child, family life, life, parenting, special needs | Leave a Comment »
The high school search continues. (Screaming loudly in my head)
I have a tour this week, one right after Thanksgiving, and another two just before the winter holiday break.
In a crazy attempt to find a good school, I thought today, at the suggestion of a colleague, to try in my work district. We live in LAUSD (Los Angeles Unified School District) and I work in Beverly Hills, which has its own, fairly well funded, highly coveted school district, BHSD. I called to see if I could permit in since I work in the area and could be his primary transportation. A no go. They stopped accepting permits from outsiders, other than from actual City employees.
It was worth a shot.
The truth is, it probably wouldn’t have been better for Cole academically speaking anyway, but it would be in a safe neighborhood on a clean, accessible campus. Sadly we’re kind of down to those being highlights.
I’m touring our home school in a couple of week, if only to rule it out. After speaking to their special education counselor, I learned that the campus is accessible (“Yes, it has stairs”) and that it’s safe (“We have several police officers patrolling the campus, but we can’t control what goes on outside the gates”) so I’m feeling really confident about it. (Typed dripping with sarcasm, in case it didn’t translate in the writing). I’m having a really hard time mustering any enthusiasm for that tour!
I continue to be perplexed by how hard it is to find a decent placement for children with special needs, who want to attend typical school programs, but need some support either for their physical needs, or accessibility to the school work. Cole has only known inclusion. He’s been included since he was a year old. 80% of his friends are typical kids. He doesn’t understand that the world outside our little bubble isn’t as welcoming or accepting of people who are different. It’s starting to feel like a cruel joke. It feels a little like being thrown to the wolves.
I don’t know what trumps a wolf, but I’m preparing for battle, and victory.
Posted in cerebral palsy, Education, Family Life, Life, Special needs parenting | Tagged: cerebral palsy, differently abled child, Education, family life, life, parenting, special needs | Leave a Comment »
Cole is a funny one. He can be struggling with pain and discomfort but if I bang my toe on something whilst making my way around the obstacle course that was once my bedroom, jovial laughter replaces his whining and tears. Hearing someone say “beautiful” on TV has the same effect, and seeing someone kiss often does as well. He somehow manages to distract himself out of the anguish and momentarily finds humor.
As I tried to put him to sleep tonight, he was fussing and feeling a bit achy so we gave him a dose of valium and some Tylenol (really working to get off the oxy…) and as he and I waited for the meds to take effect, we noticed that we could see the sunflowers I picked for him today from our garden even in the dark. I said something about them being so beautiful and he laughed a little. Then I broke into made up lyrics about the flowers smiling at him to the tune of our song, Coldplay’s Yellow.
My little ditty led to body shaking hysterical laughter. Yes, sometimes I can be really funny…It’s the first great laugh he’s had since last Thursday so it was amazing to hear and I feel like somehow it relaxed his body enough to allow him to begin to contemplate sleep without the anxiety he was having before the laughter.
I hope he sleeps peacefully tonight, dreaming of sunflowers smiling and laughter. He’s had a few rough nights since we got home from the hospital so a good nights sleep would be beneficial to him and to his Dad and I (when he’s not sleeping, no one is sleeping…and hormonal woman that I am, resuming sleep after be awakened for any period of time just doesn’t happen…I can’t figure out how to will myself back to sleep)…
Sleep little darling, do not cry…I will sing a lullaby…(about smiling yellow sunflowers)…
Posted in cerebral palsy, Family Life, Life, Special needs parenting | Tagged: differently abled child, family life, Healing, life, special needs | 1 Comment »
Our annual pilgrimage to Mammoth Mountain begins today with a five-hour road trip up to the Eastern Sierras. The excitement has been mounting all week and no one is more excited than Cole. He loves vacations like this where the day is filled with a defined activity – skiing all day in this case and ends with a group evening – dinner for 24 each night qualifies! Six families coming together for a weekend of snow fun!
We’re stocked up with lots of different playlists on Spotify and a pile of programming he can watch on the DVD player in the van, which will leave him pretty content during the whole drive. Cole does really well on long drives when we prepare well! The nice thing about having him enjoying a movie or favorite show is that it gives my husband and I a chance to chat uninterrupted or censored for hours – a rarity in our daily lives.
My husband is barbeque obsessed (he spent two summers perfecting his rub and baby back ribs and is now focusing on perfecting Texas style brisket) and my mom, ever supportive of his passion, forwarded a blurb about a great barbeque joint that’s on the way to Mammoth so he’s already planning our lunch. I’m hoping we can rope one or two of the other families driving up to meet us. Road trips are definitely more fun when you bump into familiar faces!
Cole is beyond excited to ski again. This will be his third year skiing with Disabled Sports Eastern Sierra (DSES), a volunteer based sports program that accommodates needs of all kinds. We’ve been inspired by there program where blind skiers are able to confidently zoom down the mountain and kids like Cole joyfully bounce over moguls in their bucket skis. It’s amazing.
The evenings are casual but festive with all of the families dining together. It’s a great end to the day and the mood is always high. It’s not hard to understand why Cole loves this kind of vacation…
(Last year’s gaggle of happy kids)
Posted in cerebral palsy, Family Life, Friendship, Life, Special needs parenting | Tagged: cerebral palsy, Dance, differently abled child, family life, Friendship, life, parenting, special needs | Leave a Comment »
I read a fascinating article at TIME.com that gave science-supported tips for improving your child’s intelligence. I too believe that making a strong effort to instill confidence, healthy self-esteem and providing a happy, loving environment helps children to thrive. I attribute much of Cole’s success to my husband and I supporting his interests, challenging him mentally and physically, and immersing him in a nurturing, stimulating and accepting community.
I recommend checking out the article, as it’s quite interesting – : Ten Steps Backed By Science
The basics are as follows (and more detailed in the article):
1. Music Lessons
2. The Dumb Jock Is A Myth – Be active!
3. Don’t Read To Your Kids, Read With Them
4. Sleep Deprivation Makes Kids Stupid
5. IQ Isn’t Worth Much Without Self-Discipline
6. Learning Is An Active Process
7. Treats Can Be a Good Thing — At The Right Time
8. Happy Kids = Successful Kids
9. Peer Group Matters
10. Believe In Them
While I recognize that Intelligence isn’t the only measure of a person, it is a worthy trait to strengthen and develop. A well-rounded personality tends to be more successful in the long run. Humor, empathy, compassion, common sense, courage, integrity, and self-confidence all are necessary traits to develop as well as intelligence, though I feel like the ten expressions for supporting intelligence likewise support some of these other traits.
It’s what we put into our children that ultimately help them to become their best selves. Our modeling, our support, our example, our trust, and our faith, all impact their lives and their development.
Posted in cerebral palsy, Family Life, Life, Special needs parenting | Tagged: cerebral palsy, differently abled child, family life, life, parenting, Responsibility, special needs | Leave a Comment »
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.
Posted in Family Life, Life, Special needs parenting | Tagged: cerebral palsy, differently abled child, family life, life, parenting, special needs | Leave a Comment »
February seemed to fly by. It started out with Cole and I having the flu for a full week, most of which my husband missed due to travel, which was probably a good thing since he didn’t catch it too. I felt so poorly that even looking at the computer made me tired and worn. Not a lot of writing this month. I feel it when I don’t have the outlet, but sometimes life just give me the luxury of time. He missed our big school fundraiser too. CHIMEapalooza. It’s a variety show of sort themed around inclusion. This years proper theme was “this is how we do it”. I shared Dan’s piece earlier this month. Tom Morello was the big hit. He came and sang a couple of folk songs, including This Land is My Land backed by lots of our kids, Cole included (he’s a big fan of Mr. Morello!). It was a great night celebrating our school and the amazing CHIME community.
February’s song list and artists are below:
1. THE LAST SONG – The Foo Fighters
2. DON’T WORRY BABY – The Beach Boys
3. SICK AS A DOG – Areosmith
4. I AM THE DJ – David Bowie
5. LOST IN THE SUPERMARKET – The Clash
6. CIRCLES – Soul Coughing
7. I STILL REMEMBER – Gary Numan
8. I WANT ANSWERS – House of Freaks
9. RAININ’ IN MY HEART – Slim Harpo
10. SEE ME, FEEL ME – The Who
Posted in Family Life, Life, Music, Special needs parenting | Tagged: cerebral palsy, differently abled child, family life, life, music, special needs | Leave a Comment »
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.
Posted in Family Life, Life, Seizures, Special needs parenting | Tagged: cerebral palsy, differently abled child, family life, Healing, life, parenting, Seizures, self acceptance, special needs | Leave a Comment »
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…
Posted in Family Life, Life, Marriage, Special needs parenting | Tagged: cerebral palsy, differently abled child, family life, life, parenting, Romance, special needs | 3 Comments »
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!
Posted in Family Life, Life, Special needs parenting | Tagged: cerebral palsy, confidence, differently abled child, family life, life, parenting, special needs | 1 Comment »
I love your brain 