web analytics

Sharing a (Special Needs) Goal

September 18, 2012 in Community Wisdom, Featured by Shelley Mannell

It is a question most parents tell me they dread – heck, it makes me anxious and I’m one of the therapists in the room.  “What are your goals for your child?”  It has always struck me as a strange question; our goals for our children tend to be universal – we want them to be healthy and happy. Beyond that it sometimes gets a little blurry. And when I teach continuing education courses for pediatric therapists we often have long talks about goal setting.  If it’s complicated for therapists, I don’t think it’s something we should be expecting parents to do.

As a parent, if you anticipate this question at an upcoming appointment, there could be a different way to frame it.  What if the question was “What would make your child’s day a little easier?”  I’m sure you would have many answers.  Perhaps it would make mornings smoother if she could put on her shoes without melting down.  Maybe he would like to go down the playground slide with his friends. Or she might wish to be able to stand and sing with the school choir.   Communicate your answer to that question to your child’s therapists. Let them work it into a formal goal and together, you can formulate a plan to accomplish it. If goal setting is a team effort, then your child wins every time.

————

Shelley Mannell is a Physical Therapist in St. Catharines, Canada with 25 years of experience supporting children and families on their journey to independence. You can read about HeartSpace Physical Therapy for Children at www.heartspacept.com or follow Shelley on Facebook at HeartSpacePT or on Twitter @heartspacept.

————-

Be sure to check out site co-founder Julia Roberts’ posts about her daughter and Champerina and about traveling Champ on Build-A-Bear Workshop‘s blog! They are a huge supporter of this special needs community!

Sunflowers and Tulips

September 12, 2012 in Featured by Julia Roberts

Not long after the kids were diagnosed with ARPKD I came across a popular essay that many people in the special needs community identify with and it’s called Welcome to Holland. It uses the comparison of raising a child with special needs like landing in a place like Holland when you were really expecting Italy.

When I first read it in those early days, it resonated with me. It did because I was still wrapping my mind around raising two kids with unbelievable needs and it made sense…I wanted healthy kids, I didn’t get them, but I still love them.

I got to thinking about Holland and the pretty picture I had in my head. Special needs parenting wasn’t pretty. It sucked in a lot of ways that had nothing to do with me not wanting my kids here, or being grateful they were alive. For me. Tulips are no sunflowers. For me. I’ve been known to privately rant about people and say, “Well, they can just go to Holland.” For a lot of people I know, it’s a metaphor that really speaks to them. I actually find it beautiful that it speaks to some people, it just doesn’t speak to me. To embrace what feels right is a lot of what parenting is at its best, right? I embrace that we are different, because we can learn from each other if we’re open to learning. It’s what makes my little corner of the world interesting.

When Dawn and I were working out the plan (yes, that’s ongoing!) for Support for Special Needs we talked a lot about what type of community we wanted to build and we always came back to an inclusive one at the core. We wanted to bring to focus different resources for families and create a safe place for dialogue.

I think we’ve done that and I’m proud. Do we believe/get behind every idea presented on the site? Um, no. But I’m proud that we share what we do and for people to present questions, if they desire. Is everyone going to agree? Um, no. Because that’s not real life (not in my world anyway).

Recently we had to defend someone who was challenged in an aggressive way instead of in a way that fostered discussion. Unfortunately the situation immediately resulted in that community member leaving the site and for that I feel bad. I also feel bad that there wasn’t a continuing dialogue that offered a different point of view. The back and forth conversation never happened.

We present resources and we trust that people in the community will do the research they want to and need to to make the decisions that are best for them/their kids.

It’s okay to agree to disagree. Presenting resources wins out, because everyone deserves to find their village. Even if it’s in Holland. What works for one in Holland might not in Italy. Also? If you want to travel between Holland and Italy, we’re behind you. Don’t want to see either? Don’t fly there. We defend your right not to go. We also defend our right to present all of the travel options.

——–

Originally posted November 2010

One Week

August 20, 2012 in Featured by Robert Rummel-Hudson

We’ve only got a week left.

It seems inconceivable that Schuyler returns to school just one week from today. I know this is a rite of passage for every family, and I’ll probably have more more to say about it next week. This year it’s more complicated than ever, and we all seem hyper aware of that fact. Oddly for her, Schuyler has said that she doesn’t want to go back to school, which says a lot about how she felt about last year, her first in middle school. And of course, if everything goes as planned (or “planned”, perhaps more accurately), she’ll be moving to a school in the Chicago area sometime in October. So yeah. School’s a little more daunting than usual this time around. Perhaps more than just a little.

But for now, we have a week.

I hope children no longer write about what they did over their summer vacation for school. I always hated that assignment when I was a young kid in West Texas, mostly because I had a difficult time figuring out how to spin an essay-length piece out of “I basically farted around for three months. I caught horny toads and drank some Slurpees. The end.”

I’m not sure Schuyler would be able to do much better. She went to work with her father. She saw some movies. She tried to dye her hair blue but it mostly just darkened up for a few days and then went back to normal. She played Miracle League baseball. She swam and tried to make friends at the pool, with the same predictable results. She went to a Texas Rangers game and ate ice cream out of a little hat. She worried about school. She worried about her father. She watched the future grow a little closer.

It’s been a weird summer, and the past week in particular hasn’t been an easy one for me. I find, as I always have when I’m down (which is far more frequent than I let on to anyone, least of all online), that Schuyler is remarkably perceptive. It is in these moments that she becomes the one who gives to me. She’s a deeply empathetic soul. I sometimes wonder if her disability has anything to do with that. In particular, I often believe that perhaps the hard work that goes into communicating with the rest of the world has given her an acute ability to read the moods and subtle signals of the people around her. Her monster breaks her in some ways, but perhaps it gives back just a little, too.

I find that Schuyler seems particularly sensitive towards me. This has always been true, even when she was very young. Of late, she has observed that I’m sad, even when I work very hard to keep it from her. She’s tenacious, and it is in those moments during the summer most of all, when we spend hours and days together, that she becomes the person I need most of all. We’re like the song, my beloved monster and me, and during the summer we truly do go everywhere together.

Tonight, as she was going to bed, she declared that I needed a hug, and she was going to be the one to give it to me. As I held her close, I told her, “You know, when I’m sad, you make me happy.”

She smiled. “I always make you happy, Daddy-o! I am going to kiss your head now.”

And she did, before springing off to bed.

I get her for one more week before she goes back to school.

One day I’ll have to let her go for good.

Vacations and Special Needs

August 8, 2012 in Featured, From Julia by Julia Roberts

I’m usually pretty guarded when it comes to building up time off, or a vacation, or some special event. I am guarded because more time than I care to remember our plans have been changed due to something connected to special needs.

This summer it was our vacation at the beach. It was with my parents and my sister and her family. We’d looked forward to it all year because it’d been several years since we’d been to the beach together. Maybe that was where I got in trouble; it was really important to me. We had a scare with my son’s transplanted kidney. The first day of vacation the care team called to tell us they feared his body was rejecting his transplanted kidney.

I was really disappointed. My son was out of sorts all week, the rest of us were as well. When it was all said and done, we had about 3 full good days at the beach (but my son did love to see Batman, when we enticed him to the big city 70 miles away for re-check labs). I’m over it now. Mostly.

I figure the amount of disappointment was equal to the amount of my (stupidly) forgetting briefly that we should not plan – absolutely plan – on things panning out the way we’d expected. That’s not a negative way that I think about life, it’s a realistic one. Flexibility has always been something we tried to strive for, given our family situation.

This was a huge reminder to be flexible. It’s the one thing special needs families should have an abundance of, right?

Is flexibility your key?

The Chaos that is Special Needs Parenting

July 11, 2012 in Featured, From Julia by Julia Roberts

Last week I set out to take my kids on 5 appointments. You know how that is, it’s summer and we have to cram in all the time at doctors and therapies before school starts because our kids need all the time in the classroom they can get.

There are some follow-up tests and monitoring and that mostly sucks because what kid wants to fill their summer with appointments and tests? I’ve been belaboring the fact that this is how it is in the summer. This summer isn’t any different than last or the one before that or the one where we were gearing up for Quinnlin’s fall kidney transplant. Yet it still surprises me. Why is that? Do I forget all school year how stressful summers can be? Let’s just say  I can completely relate to what Rob wrote on Monday.

I’ve been more silent on here and my personal blog and I was just thinking it was burnout from being online, writing, or some kind of writer’s block. It still may be, but as I was faxing a form to another specialist yesterday I realized my burnout is from all of the extra things we are cramming into our schedule right now.

Which is really ironic because I’ll be moderating a panel at BlogHer’s HealthMinder Day. The topic is close to my heart because I consider myself a good advocate for me and what I need. I think in the shuffle that is summer I’m losing the time and energy to be the advocate I need.

On the outside I appear calm as can be but there’s an inner turmoil. The chaos today is figuring out what is at the bottom of the chaos. Regular stress? Or changes I should make online, or with Support for Special Needs.com? The only answer I can give myself today is that time will tell.

That is a mantra I know intimately.

——

Be sure to check out Champ’s recent adventure to visit Ireland and a special little girl and family there! Thanks Rianna for the great care you gave him! We’re working with Build-A-Bear Workshop to visit with families around the world who are touched by special needs. Join us!

 

Birthdays and Special Needs: Happy Birthday Max

July 3, 2012 in Community Wisdom, Featured, Featured Member by Jennifer King

On the Fourth of July my older son Max will be nine years old, which works out perfectly for him.  Despite his autism he has always loved parades and fireworks.  I may worry about losing him in the crowd, but I never worry he won’t have a good time. He is probably the happiest person I have ever known. I don’t know many people who wake themselves laughing!

This last year was a big year for him. He started spending some of his day in a mainstream class, something that I admit worried me. But after a period of adjustment it worked out quite well. He was also bringing home more and more schoolwork marked, “Did this on his own!” and “Required no prompting!”

He was even invited to a couple of birthday parties. One we passed on because it was at a bowling alley and I was worried about the noise level. We made it to the other one, where they had a bouncy castle and pizza, two of Max’s all-time favorite things.

Towards the end of the school year I was feeling confident enough to allow him to walk from the front door to his bus all on his own. ( I admit I stood in the door I watched.)

His communication remains an issue, his speech team at school feels confident that he is developing functional language skills.

In his own way and in his own time he is gaining independence and confidence, and I couldn’t be more proud of him.

The future remains a question mark, but I try no to focus on that. He has come a long way already, and there is no telling how far he will go.

Yes, it’s easier to imagine a future for his neurotypical brother, but the truth I can’t really know what his future holds either.  And when it comes down to it, what I want for both of them isn’t really so different. I want them to learn and grow. I want develop their gifts as best they can, to be as much as they can.

And I know it’s a cliché to say it, but what I want most is for them to be happy.

So far Max has that one down pat!

——-

Please visit Build-A-Bear Workshop’s blog where Support for Special Needs site co-founder is telling her daughter’s story.

(Special Needs) Marriage Tips

June 6, 2012 in Celebrations, From Julia by Julia Roberts

I have just celebrated my wedding anniversary. I’m talking about it a lot because all of a sudden that sounds like a really, really long time. It could be because we missed 17 years (we celebrated 16 twice) so maybe that has my mind screwed up?

I was talking with someone who said their marriage wouldn’t have survived the crisis of a chronically sick (or two) kids. I don’t know. I know way back then I couldn’t have imagined us surviving this craziness. What are the reasons?

When I said for “better or worse” that day I really meant it. I mean I REALLY meant it. I just didn’t really UNDERSTAND what that mean, in reality, you know?

I meant it as much as I could understand what better or worse was to me at the time. I didn’t know we’d be faced with the mortality of our kids, financial instability, medial interventions and trips to the NIH and discussions about genetics and kidney failure and finding kidney donors.

Luckily we started out pretty strong as marriages go. Luckily we waited until we were a little older (me 29 and him 33), but still we had no idea.

Someone asked my how it was that we have survived it (so far I mean) so I thought I’d come up with a Top 11 List, in no particular order.

1. We picked the right partner (do not underestimate the importance of this).

2. We have separate and combined senses of humor (relieves tension if used properly).

3. We give each other space and the benefit of the doubt during crisis (which means some things that are said do not have any repercussions).

4. We at least still want to be intimate, even if not given the time or emotional energy to do so (oh, the weeks add up sometimes).

5. We let and push each other to handle what they’re good at in responsibilities (I’m better at medical crap, he’s better at paying bills).

6. Our fundamental beliefs about life mostly line up (even if our politics do not).

7. He doesn’t do things that annoy me (seriously, he can’t clip his toenails in the house within earshot and he can’t chew a banana near me).

8. We make fun of the kids when possible (privately, of course!).

9. We are unified in the important things and especially in front of other people (this is helpful in many situations in the household and out).

10. We give each other space from our life. We have separate interests (although I am better at this than my husband).

11. We don’t fight over stupid stuff (we let a lot slide because after you watch your kids suffer, that stuff seems unimportant because it is, largely, unimportant).

What can you add to the list? Share your tips…what makes it work for you and your beloved?

 

Ultimatums and Body Snatchers

May 22, 2012 in Featured, Featured Member by Chrisa Hickey

the body snatchers
On March 31st I gave The Girl a proposal.  Well, not so much of a proposal as an ultimatum.  See, she’d spent most of March in an intensive outpatient program working on RAD and Depression symptoms, but when she came home to the normal daily routine, she wasn’t out of her rut.  The negative, self-deprecating behavior and talk continued.  So I came up with the proposal.  For 30 days she would agree to do three things, every day:

  • Take her meds every day
  • She would agree to get up before school every day and let me help her do all of the hygiene and grooming steps she thinks girls who feel pretty and good about themselves do
  • Do both things even though she things they are stupid and/or won’t make her feel better

She fought it. She sat on her bed and told me it wasn’t going to help, she was just going to be unhappy for the rest of her life, and she didn’t want my help and this was just some scheme to MAKE her take help from me.  I stood my ground. I told her I didn’t care if she didn’t want to do it.  I didn’t care if she was mad at me. She was going to do it for 30 days, like it or not.  I even pulled a play out of my mom’s old playbook and told her that in my house she’d do what I ask, period, or there would be consequences.  She turned up her nose, whined some more, and, the next morning, she got up and whined through my standing over her while she brushed her teeth and I combed and styled her hair.  She whined and complained every morning the first week of April.  It was torture. Her school bus comes at 6:30 in the morning, so to get through the complaining and get her ready for school meant we were up trying to be civil to each other at 5:30.  My husband Tom was placing bets on whether I’d be able to stick it out an entire month.

On April 10 I ran late, and dragged my butt out of bed at 6 AM.  It had been rough going so far and I was not looking forward to having to rush The Girl through everything I was sure she hadn’t done because I wasn’t breathing down her neck.  I was halfway down the hall when she stuck her head out of her room and said, “Mom, I’m not sure what to wear with this shirt. Can you help me decide?”  I stood paralyzed, still halfway down the hall, wondering if I was awake or still asleep and dreaming.  Tom nearly fell out of bed.

She asked for help.  Unprompted.  

The rest of April was practically a dream.  We played with different hairdos in the bathroom mirror before school each day. She asked about different eye shadows and squealed with delight at the realization that mascara comes in lots of fun colors.  She asked for a purse for her birthday.  More importantly, she tells me about her day, every day.  She’s eating. There’s no drama.  Last weekend I seriously considered checking her room for a pod.  The Girl turns 17 in May.  30 days ago, I was convinced we’d never be able to get through to her and make her realize that having a family is a good thing before she turned 18.  It’s only been a month, but I’m feeling a lot more hopeful that we’ve finally found the magic combination to help her learn to attach.  Wish us luck.

Special Needs and Settling

May 8, 2012 in Featured, From Julia by Julia Roberts

Recently, I’ve had to get to know our new doctor. He’s a pediatrician I vetted through a process I wrote about here a couple of months ago.

Since that How To post I’ve had to take my daughter in to see him for an unscheduled appointment because of strep and a UTI (which is fairly serious in a kidney transplant kid) and my son for a scheduled well visit. I was a little nervous. It can be nerve wracking beginning a relationship with a new doctor and team and hopes were so high.

I’d prepared myself to have to learn the ways of the staff and processes and I’d vowed to be patient while we get to know each other. I knew as we hit “firsts” with them in caring for the kids together we’d have some bumps. I knew I’d have to explain and be patient while they “learned the ropes” of kidney transplant recipients and their unique needs in relation to regular and not-so-regular pediatric needs.

I have to admit my shock to how they have handled the few items. Growing cultures and testing for UTIs without asking, approaching an infection with an appropriate treatment and it with it not working, our new doctor immediately said he wanted to call the transplant team. Again, he did this without hesitation and without me asking. He handed two referral forms for specialist before we left his office.

In leaving the office a few things struck me about the differences between new pediatrician and fired practice. The old practice had a lot of doctors and more layers, which of course means more time to get answers and help. It appears the new doctor handles his own paperwork, based on him handing the referrals — as I’m sure he recognized the shock on my face, as I said, “Now, what is this? Oh, wow, eh.” Our old practice would have made me call the next day and leave a message. He spent nearly an hour with us for the well visit and had great input on a couple of issues. The office is completely electronic. There’s an online appointment, lab and email system. The new office seems to want to take things off TO DO list and the old practice certainly added to my list.

I am stunned at how long we settled with what we were used to with the old practice even though it wasn’t the greatest, but I didn’t know it could be several levels better. We settled for so long and it’s easy to see that now. It feels strange to be on this side, an easier side of something that has been challenging for so long.

I’m guilty of settling. I’m guilty of it because there are so many other things to deal with that changing something when it’s not completely broken seems like so much energy and time, which is something in short supply. Sometimes it’s worth it, and that is something I need to remember.

What other things are we settling on?

The Fated Family

April 23, 2012 in Community Wisdom, Featured, Featured Member by Robert Rummel-Hudson

If you do a search for quotes concerning not being able to pick your family (like I just did, for this post), you’ll actually find that there’s not necessarily just one big famous quote, but a bunch of them, all saying the same thing (“You can’t pick your family…”) but with different perspectives on that fact (“…and that sucks, because most families are dysfunctional and horrible!”, or “…because God picks them for you!”). The inflexibility of choosing your own family seems like the constant, like a universal truth.

Parents of special needs kids know better.

Our family members try, some of them, maybe most of them. Some get it impressively right; others blow it catastrophically. But the neurotypical, unimpaired members of our families are ultimately no more or less inclined to become part of a support network for your special needs kid than anyone else in the big dumb world. And perhaps it’s not fair to expect them to be.

I’m not sure what special needs families did before the internet. Probably just sat around thinking they were alone, despairing and trying to figure out what to do without help from anyone except maybe a doctor. (No offense to members of the medical community, but speaking as a parent, I have to say, you’re not generally very helpful when it comes to helping families cope with disability. Work on that, please.) That world sounds awful, and it’s a world that a lot of families still find themselves entering when they have a baby with a disability, or get a diagnosis down the road like we did. Outreach to new families of kids with special needs is a huge part of the whole mission for advocates.

But here and now, living in The Future, the internet has created a world of possibilities for support. There are kinks, of course. For every supportive family resource, there are little villages of virtual curmudgeons ready to chuck bombs at your zone of support. But in general, it has become easier and easier for parents and families to find each other. (I guess the curmudgeon villages provide the same service, for the curmudgeons.)

Out of these online connections, we build families. We reach out, we meet people who share our concerns, who live on our world in some way. We meet them, we learn who they are as people, not just parents of kids like ours. We meet their kids, our kids meet their kids. They become family; their kids become as ours. Families are built; they are “picked”, as it were, and the community is strengthened.

We build families out of the people we care about, and the people we need. They’re not always other people with children with disabilities. Schuyler’s godparents aren’t even parents, but they are exceptional educators who love Schuyler and who understand her and her needs. The point is, our families expand, out of necessity, and our lives and the lives of our children are the richer for it.

It’s not that the families of kids with special needs are like the Island of Misfit Toys. Not exactly, anyway. It’s more that like the best families, we are perhaps Fated. Fate leads us to the people we need, circumstance brings us into orbits around each other, love builds our new families. There aren’t always a great many comforts in our world. Sometimes we simply need to make them out of what we have. Fortunately, what we have is extraordinary, if only we trust in Fate to lead us to it.

%d bloggers like this: