CHRISTMAS PRESENT

December 14, 2015 - Leave a Response

Cole is the most difficult child to buy gifts for. He wants for nothing. Not because we give him everything he wants, but because he truly doesn’t enjoy a lot of things. In some ways he’s a very simple fellow. He loves his television, occasional movies and books, and music.

He does the occasional art or science project and will every so often partake in a game. He doesn’t care much for action characters or cartoon figures or toys. He’s happy to cook with my husband and I when the mood strikes him, but there’s not much he needs in terms of cookware or accessories.

He likes to dress simply, which means during the week to school dress code – mostly navy sweat pants or shorts and a white long or short sleeved athletic shirt, and non-navy sweats or shorts and t-shirts on the weekend.

He’s got all kinds of gadgets and gizmos meant to make his life more accessible or fun. They don’t all work but we try. Same goes for seating. We love the Chill Out Chair and so does he, but various beanbag chairs haven’t fared as well like the yogibo, a giant beanbag like thing that now resides upstanding in his room, hovering over everything and taking up space that doesn’t exist.

Sadly, there are way more misses than hits in our repertoire of gift selections for Cole. All given with well intentions and all given with hope and lots of consideration that they’ll be hits. Alas, we’re gearing up for another holiday and he’s always the last one to be checked off the “gifts” list.

Besides coming up with some great ideas for ourselves, we also have the additional pressure to make suggestions for everyone else. Gift cards to movie theatres and places like Amazon, Target and Barnes & Noble are always on the list. He enjoys taking his friends to a movie and it’s useful to have the gift cards in the event we stumble upon something that seems wonderful for him.

I’m looking towards high school with some of the ideas this year. He and his para-professional are going need to be on top things come high schools so I’m focusing on ideas that will help, like a portable scanner so they can scan his homework, classwork, and school notices into an app that we can all access with the hope that less things get lost or don’t make it home. It’s not a glamorous gift for a fourteen year old boy but it’s practical and needed.

For Cole, people are more important to him. He likes going to lunch with his grandma each week and he looks forward to seeing friends and family and enjoys being able to share some frozen yogurt or a movie with them. Genuinely…that’s the stuff that makes him happiest. I love that about him but I still wish I could find the one great thing that makes his eyes gleam and smile widen!

Categorized in cerebral palsy, Christmas, Family Life, Life and Special needs parenting
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SMILE

November 30, 2015 - Leave a Response

I’ve heard Tears of a Clown several times this past week, which is kind of random and unusual. The song always reminds me of a dear friend, who once asked me to promise that it was played at his funeral. A strange request, especially since it was made when we were in our late teens, if my memory serves me correctly (which it doesn’t always). At the time both the Smokey Robinson and The Beat versions were in play.

It used to strike me as an odd choice, especially for my friend. He and I met under funny circumstances in high school. He was a grade below me, and we had a mutual friend who had decided we looked alike so she started calling us by each other names. At some point it only made sense that we met. We became fast friends, he one of my best.

Thirty some odd years later, he is still a dear friend. I don’t see him nearly as often as I’d like but every time I hear that song, he leaps into my thoughts, and the more I contemplate the song choice, the more I’ve come to understand that even back when we were kids, there were parts of him I didn’t know.

To me, a somewhat insecure, but likeable girl, he was the full package -bright, handsome, very funny and popular.   We shared a lot of interests and sensibilities, which is why we got along famously. We still can pick up from the last point whenever we do manage to get together and fall back into a comfortable ease. I treasure him.

But I’ve also come to recognize that the smile sometimes does hide tears. Maybe not quite that dramatically but that there is a underlying current of sadness to him that I couldn’t distinguish when we were young, but that feels somewhat familiar to me now. Life has seasoned my compassion and when I look deeper into his smile, I see so much more.

I understand why the song resonated with him, and perhaps what he was trying to tell me even back then when we were young.

I now sometimes feel like it’s an appropriate song for my life as it unfolded. I don’t have just one song, I’ll probably create a playlist when it’s time because that’s what I do…but this song will likely be on it because I’ve come to understand that sometimes people just need to believe that your smile is a smile, and not a façade for what’s really going on inside, and sometimes you just need people to think it’s a smile too.

 

Categorized in cerebral palsy, Family Life, Friendship, Life and Special needs parenting
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THANK YOU

November 27, 2015 - Leave a Response

I meant to post this on Wednesday and time got away from me…I hope everyone had a lovely holiday!

With Thanksgiving just days away, it’s only natural that one starts to contemplate the things they’re thankful for so that when the question is inevitably posed to the feasting table of friends, family and others, you have the seemingly perfect spontaneous response.

That’s not meant to be cynical at all. I just suspect that I’m not the only one who does better at public, yes, even a table of eighteen is considered public in my book, speaking when somewhat prepared. Besides, it’s good practice to be thankful and appreciative. Many wellness proponents recommend daily gratitude exercises as a means of learning to be positive, thoughtful and kind.

I’m thankful for quite a lot.

The middle of this year was stressful and trying and while it’s continued to be more difficult than anticipated in terms of the healing process for Cole, both physically and emotionally, the light is starting to peek through a bit and I feel positive about the year to come. So, I ‘m thankful for Cole truly starting to heal and to quite literally finding his footing again.

I’m thankful that my mom is near, and that she and Cole have such a loving, sweet relationship. I so look forward to seeing her each weekend, mostly because I love how much Cole adores her and enjoys getting lost and lunching with her.

Her boyfriend (yes, my mom has a boyfriend, which sounds funny for seventy somethings!) also has my gratitude. He’s never treated Cole as anything but one of the guys. Cole loves their covert conversations about girls and getting into trouble and delights in his stories. Cole’s desperate to have him teach him to play poker!

I’m beyond appreciative of all of the people who reached out with cards, letters, and treats for Cole when he was recovering. The support was amazing and the practice of reading each card, and learning about the author, and writing back was a great diversion from both recovery and TV! The love was overwhelming.

Along those lines, on a daily basis, I appreciate and would be lost without my growing and deepening network of friends who inspire, teach, support, and love me every single day. Without you I don’t think I’d have my sanity. I take example from each of you on how to be a parent, advocate, friend, and partner. You’re there when I need to laugh, cry, bitch, share a glass a wine (or two).

Finally, I’m thankful for my family. I am blessed to have a husband who is one hundred percent dedicated to our family and who does his best to see that Cole’s life is as rich and full as possible, and to have a son who makes every day brighter. Being Cole’s mom has taught me more about grace, determination, compassion, and love than I thought a single person could. I’m blessed for every day I get to be his mom.

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Categorized in cerebral palsy, Family Life, Friendship, Gratitude, Life and Special needs parenting
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MAGICAL MYSTERY TOUR

November 23, 2015 - Leave a Response

We’re trying to solve a mystery…

Some rather angry bruises appeared on Cole’s inner thigh last week. They look like a series of overlapping oval shaped bruises so whatever is causing them is something that occurs continuously throughout the day(s). The mystery is what.

All of the equipment he uses on a daily basis is equipment he’s been using for a while prior to the bruising, and even post surgically without bruising. None of the various strapping or harnesses or wedges really sync up with the location of the bruises and there’s nothing else he’s doing differently that could cause them. It’s frustrating and curious.

We’ve noticed that when he’s home and wearing the knee immobilizers (he has to wear them at night for a year while his body continues to heal from the surgery), he sometimes slips his fingers into the top of the knee immobilizer, which has led us to wonder if he’s causing the bruising himself. It seems unlikely but nothing else seems like it’s the cause either.

This is one of those times I wish he could just tell us what’s happening…Miss Marple I am not!

 

Categorized in cerebral palsy, Family Life, Life and Special needs parenting
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I AM THE DJ (Series – 11)

November 20, 2015 - Leave a Response

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The whole high school search has me in knots these past couple of weeks so I really want to try to go into the weekend and Thanksgiving holiday week feeling a little lighter in spirit. Music does it for me. It always helps my mood and truly has the ability to lift my heart and to get my body revved. Cole shares this synchronicity with music. He loves it and it can make or break a drive. He’s very ready for holiday music, which if you recall, I desperately try to enforce the “not until after Thanksgiving policy” upon him We’ve had a couple of outings already where nothing would satisfy but holiday music, and I’m thankful that the Bad Religion holiday album exists because to him it’s holiday music, and to me, well, it’s Bad Religion…(who by the way I grew up with…same junior and senior high school..).

I haven’t posted a playlist in a while but I’ve got one ready to play for the boy tomorrow when we are out and about doing some pre-Thanksgiving shopping and prep:

  1. CAGE THE ELEPHANT – Mess Around
  2. TONES ON TAIL – Go!
  3. ALEJANDRO ESCOVEDO – I Wanna Be Your Dog (Cover)
  4. BELLE & SEBASTIAN – I Want the World
  5. MARCHING CHURCH – Hungry for Love
  6. ALESSIA CARA – Here
  7. The FRAY – Heartbeat
  8. BRICK & MORTAR – Train
  9. ECHOSMITH – Cool Kids
  10. KING CURTIS – Soul Serenade
  11. KAYA STEWART – In Love With A Boy
  12. ADELE – Lovesong
  13. JEAN-MICHEL BERNARD – Generique Stephane
  14. DEVO – The Girl U Want
  15. THE PRETENDERS – Kid

 

Categorized in cerebral palsy, Family Life, Joy, Life, Music and Special needs parenting
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SAY IT ISN’T SO

November 19, 2015 - Leave a Response

I toured a local high school this morning and then spent the hour drive to work trying my best not to cry.

We’ve spent most of Cole’s life fighting in one way or another for something or other. Very little comes easy in the lives of children with special needs, especially when you want your child to experience as typical a childhood as possible. We’ve never wanted Cole’s disabilities to prevent him from experiencing anything that interests him. He may have unique ways to approaching things, but we’ve been fairly successful in providing him with a fairly happy, rich, normal (ish) life.

It feels like it all comes to an end with high school. The tours tend to highlight all of the amazing academic and elective programs that each school offers and the opportunities for preparing for college and glowing futures. Fabulous programs are available to good to great students, but only those who do not have disabilities and may require support to access the curriculum. Students like Cole are relegated to special day classes where their opportunities are vastly limited.

Never mind that he’s managed to get through nine years of school with the same kids who will be advancing into high school programs where they have a world of exciting classes to choose from and clubs, electives and sports. If he were to attend the school that I toured today, he’d be left with access only to special day classes that are on the first level because the school is not wheelchair accessible (no functioning elevators in 2015!).

Physical space seems to a prevalent problem with most high schools. The desk spacing is so tight that there is barely room for a student to slide down a row to their seat, and definitely no chance for a wheelchair to fit beyond the doorway. How is that legal? There’s an obvious disinterest in any form of inclusion at most high schools.

My kid may not have the ability to complete high school in four years, however, that doesn’t mean that he doesn’t have the ability to eventually complete it, and move on to college. I can’t say for certain what his future holds, but I can say that without the opportunity to have access to a decent education it won’t be as bright as it could be, as it should be.

But it doesn’t seem like anyone is even trying. So now, tears…I held back as long as I could.

Categorized in cerebral palsy, Education, Family Life, Life and Special needs parenting
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BALL OF CONFUSION

November 18, 2015 - Leave a Response

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.

 

Categorized in cerebral palsy, Conversation, Family Life, Life and Special needs parenting
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FRUSTRATION

November 17, 2015 - Leave a Response

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.

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I don’t know what trumps a wolf, but I’m preparing for battle, and victory.

 

Categorized in cerebral palsy, Education, Family Life, Life and Special needs parenting
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THAT OLD FEELING

November 16, 2015 - 2 Responses

No matter what your circumstances, marriage is hard. Whenever you have two different people approaching anything together there’s bound to be some give and take, and when it’s creating a life together, and raising a child together, the potential for discontent becomes greater.

Throw in a child with special needs, who impacts your lives in many ways a typical child does not, the discontent grows. You can’t blame your child for the impact he has on your life. For the most part, his presence in your life is glorious, as with any child. But his needs will always take precedent and his influence is felt in nearly every decision.

Cole’s now fourteen, an age when many teens are starting to spend a couple of hours or more in the house alone whilst the parent(s) are out running errands, grabbing a bite of lunch with friends, working out, going to a movie, whatever. It’s an age where a lot of teens are also going out on their own, to the mall, parties, the movies, etc. Unfortunately, that’s not us, and it’s not Cole.

I’m certain Cole would love the opportunity to have the freedom to hang out with friends, doing something fun with out parents or adults. But he needs someone to support him, even if it’s just pushing his wheelchair, and making sure he’s included in the activity. The opportunity has never come up, not yet, but it’s also not something we can impose on his friends.

We don’t have great childcare at the moment and moving him is so much harder on him since the surgery, which leaves us with little opportunity for date nights and the like. Not having alone time puts a lot of stress on a marriage. You’d think not spending time together would prevent it but I find the disconnect makes things so much harder. It often feels like two people moving through a life side by side, but not together.

I’ve given it a lot of thought because my husband was traveling quite a bit these past months and given to my own devices, I create my own routines and it’s then hard for him to break back in to the fold. We bickered and bitched for the first weeks that he was home, and just this weekend things started to feel reconnected. We didn’t pick on one another, we accomplished things, and we relaxed a bit. I’m hopeful that we can continue on this path for the next few months where he’s homebound and not traveling. It’s nice to see glimpses of “us” again.

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Categorized in cerebral palsy, Family Life, Life, Love, Marriage and Special needs parenting
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ALL TOGETHER NOW

November 11, 2015 - Leave a Response

We’re homebound for the holidays. We will spend Thanksgiving with friends, and then look forward to our traditional Christmas Eve with the family, close and extended, at my brother’s house, and likely New Years Eve with friends. We’ll probably sneak in a Hanukkah latke fest or two as well!

This will be our second Thanksgiving spent with dear friends, and their extended family and friends, a warm, welcoming group of lovely people, and kids who welcome Cole into their fold of games and fun. It’s a relaxing evening, full of interesting conversation, laughter, and really great food and wine.   I’m already checking out recipes. I love any opportunity to cook for lots of people.

Traditionally I do a latke night in honor of Hanukkah one of the eight days (my husband is a non-practicing Jew). We’ve had friends and/or family over, and we’ve done it with just the three of us. I love making latkes and it’s our annual excuse to over indulge in their glory. Some years we’ve lit the candles in the Menorah each night, and others we’ve foregone this lovely tradition.

Christmas Eve is Cole’s favorite night of the year (we all love it but no one more than he). He loves the traditions that my brother and his family have cultivated over the past fourteen years. The evening rarely deviates from the routine, which is one of the reasons Cole loves it so much. It works with his sensibilities. It sort of takes on a movie like quality as we move from warm chatter, festive cocktails and nibbles, to a traditional roast beef dinner, complete with Yorkshire pudding, to all donning wacky Christmas hats to sing “The Twelve Days of Christmas”, to Santa dropping by for some fun with the kids, the holiday trivia challenge which leads to the White Elephant gift stealing game, and finally coffee and sweets. We leave happy, exhausted, and already looking forward to the next year.

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For the past few years we’ve done New Years Eve with friends. One family has generously supplied the house, I try to do a lot of the cooking, and we fill it out with delights from others. The evening involves lots of yummy cheese and wine and champagne, and more great conversation, laughter, and cheer. The kids do their own thing in the den, starting out with a movie, and moving to watching the ball drop on one of the network shows. It’s a perfect way to end and start years – sharing time with people we love.

This year, my in-laws will be with us at the end of the year. They’ll be here for a couple of days prior to Christmas, and then back again just after through the New Year. We’ll likely host a couple of small get-togethers for them. They have some friends here in LA, and also to give our LA based family a chance to visit with them as well. I’m looking forward to seeing them, and especially for Cole to have some time with them. They live in Hawaii and it’s not that easy, or affordable, for us to travel there often, so I feel like it’s important to make the visit special.

In the scope of all of this, I also want to try to host a couple of casual, almost open house type get-togethers. I feel like the holidays are a perfect excuse to open up your home and invite friends from different walks of your life to come share some cookies, or wine, or dinner. I’m feeling the need to connect with people I love. Maybe it’s a response to the somewhat isolated summer we had. I’ve been wanting people around and to be around people.

Perhaps also there’s a part of me that knows some of these traditions will likely change next year. Cole and his friends will likely all attend different high schools, my eldest niece will be in her first year of college, who knows where, and lives will have moved on. It’s all part of our natural evolution but it makes me want to wrap my arms around everyone and hold them close, never letting go.

Damn, I’m getting really sentimental as I age!

Categorized in cerebral palsy, Christmas, Family Life, Friendship, Joy, Life and Special needs parenting
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