Saturday, March 31, 2012
It's too long of a story to go on about why I'm burned out. I'm sure you can all relate. And that part of the story doesn't matter anyway.
It's the guilty that matters. I'm on Facebook with many parents who have special needs. My son doesn't have an infected, bloody G-Tube with doctors who can't do anything about it. My son isn't having wicked hallucinations, though that is his affliction. We aren't having money problems. My son isn't dying.
Even still, I'm so burned out from this week that I want to SCREAM.
And I feel bad about it. Like I have no right to scream. That this is my problem for not being able to keep myself together better. That this is my problem for not figuring out a way to blow-off steam. That this is my problem for not taking better care of me.
It's just "normal" life around here: dealing with a child who has a cold, dealing with a child who has a short fuse and an explosive temper, dealing with a child who does hallucinate (but not in an awful way for a long time). I know how to handle all of this.
So not only am I feeling burned out from an entire week of Spring Break with no respite from my child and feeling overwhelmed that Spring Break for him continues next week as well, I'm beating myself up for feeling guilty.
Friday, March 30, 2012
Hopeful Parents was having trouble with its former platform, so we've moved to Blogger. Our site looks just a little bit different, and I hope you like it.
I'm going to migrate all of the posts and comments from our former platform. However, what isn't going to stay with us are the author names...which is a HUGE bummer. Posts from our former platform are listed with the Author as Hopeful Parents. I'm going to try to work on this problem and see what can be done to keep the author information. We don't want to lose that attribution. Luckily, many of our authors link to their blogs within their posts...and that information is coming over.
Since we're revamping things around here, I thought I would take this opportunity to see if anyone would be interested in submitting a photo of their child or family for our slideshow on the sidebar. I am going to rebuild that element and would love to have more current photos. If you're willing to share an anonymous photo with your child pictured (could also include other family members, too!), please send them to me.
Thanks so much for your patience as I tried to figure out what was wrong with our former site...and as I spruce things up around here.
In the meantime, we're going to keep on truckin'!
Wednesday, March 28, 2012
I watch my son Graham in therapy
move his body.
The light of success in his face,
the sound of his laughter,
as new connections fire in his brain.
I watch myself lean
against the wall of the therapy room,
crouched, arms tight around my knees,
scared, hopeful, holding shame
and the secret judgments
of a life I sometimes feel went wrong.
I see my eyes in the reflection of the mirrored wall¾
they dance or drop
depending on Graham’s progress that day.
This feeling is familiar.
My eyes have risen and fallen
a thousand times as I watch my son.
I want to try a different path,
smoother, on a more neutral plane,
where I can step out
of the role of mother
and see a woman,
myself, standing tall,
walking in and out of the moments in her day.
She knows that nothing needs to be fixed.
Nothing needs to be different
than it is right now.
Jennie Linthorst is a therapeutic writing coach and the founder of LifeSPEAKS Poetry Therapy. She works privately with men and women helping them tell their stories and heal, through reading and writing poetry and personal essays. Jennie coaches clients all across the country and around the world via phone, Skype, e-mail, in addition to in person meetings. She is the author of a book of poems, Autism Disrupted: A Mother's Journey of Hope. Her family’s story is captured in the award-winning documentary film, “Autistic-Like: Graham’s Story”.
When you are the parent of a child with special needs, the world becomes filled with snipers, snipers capable of wounding you with a simple remark, a quick comment or sometimes just a single word.
These snipers are often people we know, a doctor with the news of yet another new diagnosis, a teacher with results of some aptitude testing or even a stranger with an off-hand remark. These innocent people who surround us in our lives, unknowingly become empowered with the potent ability to wound us deeply.
Today, it was Kim, our pretty Special Needs Coordinator. She called to ask me what I wanted to do about Nicholas's MCAS testing.
"What do you mean?" I asked. "Nicholas isn't ready to take an MCAS test."
"I am calling to give you an option," Kim said. "If you don't believe he can manage the test, we can give him a replacement test designed specifically for individuals who may not have the ability to test like other children."
Kim was careful in her explanation, trying hard not to discriminate or force me into a decision I wasn't ready to make.
"I don't understand?" I asked.
"His current teacher will take samples of his work throughout the year to ensure he is continuing to learn, because as you said, he just isn't able to sit through the test." Again her careful wording.
"Wow, I said, "This sounds like something my older son Weston should consider."
Weston has been diagnosed with ADHD and has significant trouble in test-taking environments.
"Oh no!" Kim said, "You should never consider this for Weston!"
"Why not?" I asked.
"Because Weston would not receive a diploma or officially graduate if he chooses this option." And there it was, not such careful wording, this time, the cold, hard truth.
The bullet is fired into my chest as I realize that Nicholas will never receive an "official" diploma. He will never "officially" graduate.
I knew in my heart that Nicholas may never become a doctor or lawyer. I just never realized that the diploma he will receive for his many years of study at school, will never be real. Suddenly, I had a vision of Nicholas crossing the high school stage to receive his diploma, only to open it and see a big red line crossed through the document, saying, THIS IS NOT A REAL DIPLOMA!
Kim had become the next sniper. I fought back my tears and struggled to keep my voice from wavering.
"I understand," I said.
"Can we revisit this next year?" I asked, "What if three years from now he IS able to take these tests? Will he still be eligible to receive a real diploma, even though he doesn't take the test now?" My pathetic attempt to keep hope for my son, always hope for Nicholas.
"I don't know," Kim said "But I will get back to you." As I hung up the phone I knew this call to me today was not one she wanted to make.
The aftermath of this conversation with Kim made me realize why I wake up each morning feeling nervous, ready and alert. I understand why, in an instant, I am ready to run, duck, hide, roll, hit the dirt or sometimes even fire back. I am waiting for the next sniper to attack. Who will be my next attacker? What will be the chosen artillery: a bullet, a cannonball, a nuclear bomb? I have endured them all. And although my life seems like a series of mortal, life-threatening wounds and long, painful recoveries, it is perhaps by sacrificing my body and my peace of mind, that I am able to endure the hardships of life as a parent of a child with special needs.
To read more about our family adventures, and to learn more about Prader Willi Syndrome, Epilepsy (ESES), ADHD, and Asperger's, please come visit our blog at www.onalifelessperfect.blogspot.com.
Monday, March 26, 2012
There’s little doubt that technologies like the iPad are changing people’s lives within the intellectual and developmental disabilities community.
In fact, I bet most of you reading this probably have a basic knowledge of augmentative and assistive communications apps that are creating new hopes and dreams.
Faster than most people ever imagined AAC apps are helping kids express themselves, some for the very first time in their lives.
Parents of non-verbal kids like me – I have two children with cerebral palsy – are excited about all of the seemingly endless possibilities.
Imagine having a nine-year-old whom you’ve never heard talk. I don’t have to, it’s my reality.
Imagine having a two-year-old who can only make vowel sounds. Also my reality.
I’m pumped about the prospect of not having to constantly guess what my children want, especially my oldest daughter.
I’m eager to not always go to the same things that have always worked for her happiness (music, Incredibles, Monsters Versus Aliens, books on tape if she can tolerate the narrator).
But does the ability for my children and I to communicate have a greater impact outside of my family’s tiny world?
Yes. This kind of technology makes the future brighter outside my world for the following reasons.
As the father of two children in wheelchairs, I’ve seen how speech and language are one disability society has the most trouble coping with.
I’ve witnessed this firsthand with both girls. Their silence is a game-changer in public settings.
I’ve also witnessed how easy it is to mistakenly perceive people who have severe communication disabilities (or none) as also having impaired intelligence. With my daughters, I can emphatically say they each have their own aptitude and intelligence.
I’ve also seen a natural tendency for people to respond to the language pattern of people with disabilities with an over-simplification of their own speech. Embarrassingly, I've done this. Eventually I became self-aware, and now avoid it.
Many times, people have talked to my children at a much younger “voice and language” than is age-appropriate for them. Over time, I’ve learned the skills to politely help them talk to my kids at a more adult level.
Most importantly, individuals who have problems expressing themselves, unless they are also hearing impaired, generally have no problem understanding normal, complex language.
Imagine when your nine-year-old daughter, for the very first time, tells you how stupid you’ve been for talking to her in ways that may have made her angry or sad. I’ve probably also done this, completely unaware.
But I’m waiting for this day. I’m waiting with all of the bad and good that can come with self-expression – even hopeful for it. I’m hopeful within my family’s world. And, I’m even hopeful for our great, wide world, too.
This game-changing technology has the potential to change how everyone views kids within the IDD community, reason enough for all of us to be hopeful.
Sunday, March 25, 2012
Two days from now is my son's 5 year kidney transplant anniversary. Five years ago a friend donated a kidney to him at the urging of her then, 13-year-old daughter.
Without even looking to Google U to tell me the statistics I can tell you that there are studies out there that I've read that tell me his chances for the kidney lasting longer go up because it is from a living donor. I can tell you that I read somewhere the 5 year date from transplant increases the odds that he will keep the kidney longer, than say, my daughter who is 2 years post transplant. When she hits 5 years, we'll have the same sigh of relief we're having for him right now.
Statistics; I've lived by them the last 10 years. When our daughter was born and she and her brother were diagnosed with a rare form of a common disease (polycystic kidney disease) and a vision disorer, I read 50% of the babies survive (now the number is 70%) birth, the 1st year is touch and go for many but after a year the chances are good they will survive to age 10, where a high number of them will need either a transplant or to go on dialysis.
Unknown to us at the time, there was a 1 in 4 chance we would have a child affected by this rare, recessive syndrome; 25% chance for each pregnancy. There was a 75% chance each pregancy would result in a child without the syndrome. Oh how the Internet has made the statistics - both good and bad - accessible when really I should never look.
What was my point exactly for knowing some of those statistics? To prepare me? There was and still is nothing to prepare me for my kids' suffering or for the experience our family has endured. And reading all the statistics on every facet of their conditions will not change that.
You know why? The studies rarely focus on the good. They don't tell you a percentage of kids who are thriving; mine are. They won't tell you that kidney function has impacted my son to lead him to join his first real team sport at age 13 or that my daughter has mastered freestyle swimming. They won't tell you that our family survived as a family unit from one kid's near death health, suicidal tendencies or the 2nd kidney transplant with one child within a few months of those experiences with the other.
The studies never start off with, "Remember, there are a lot of variables and intangibles you could experience, be sure to look for those, too."
Julia Roberts blogs at Kidneys and Eyes and is Co-founder of Support for Special Needs, a social network for special needs families and she started a product line of fun stuff at Slice of Crazy Pie in support of special needs.
Thursday, March 22, 2012
For over a year I have been actively engaged in the arduous process of trying to get services for both of my boys. If you met them in person--even for just a few moments--there would be no question about their needs. Really. So it has been quite difficult to remain positive, civil and patient through this whole process. I know other families who have been able to practically sprint through this process in comparison. I also know a few families who have had to endure longer; so I strive to remain patient.
The little guy was more apparent. He literally vibrates at times; so he was a little bit more of a sure bet. The hardest part has been for my older son. He "seems" ok to a lot of people...casually speaking. That is until you try to engage him--then you begin to see the kid I see at home. However, because we have done such strong advocating for him, he has done pretty well in school. Hence the delay in being able to see his real needs--the ones that don't always show up on some standardized test or by being able to check a box. We had received one denial, were going through a review, and continued to play the waiting game. Waiting for the magic designation that would help him now and as he morphed into some semblance of an adult. And waiting, and waiting, and waiting, and waiting some more.
It had actually reached a point where I was toying with the idea of taking him to the illustrious committee who reviews the endless paperwork that was sent (we really are just murdering entire forests with all our documentation) and dumping him there for a period of time. I wouldn't abandon him--just let them deal with him for a short period of time. Without warning, without a TV, without a working mouth filter to prevent things from escaping. Of course I would make sure he was comfortably seated in one of those snazzy rolling chairs too. And I would be most accommodating--I'd supply a snack so they could witness firsthand the eating skills of a wild child. I was nearing the end of my rope and willing to consider this all to get the magic nod of approval.
So, it came as a surprise last Friday that the powers that be--and that unfortunately is who they really are--decided that they might have been too hasty the first time around. There in a very thin, basic envelope was news that impacted our family. My son would be deemed eligible. Huge news. Shocking news. News that reduced me to tears standing in our little post office. Literally. Actual tears and relief. How lucky I was that the postmaster didn't call the authorities to remove the crazy lady in his office.
None of us know what the future will really hold for our children once we are no longer the ones who will be watching over them. Despite all our well-intentioned plans and fervent prayers, we really don't know for sure. For C. I was so afraid that there would be no supports beyond what we could do ourselves. What an unbelievably frightening prospect. For all of us. It is such a great fear for me--not the leaving of this world--the leaving of my children and their respective needs and baggage.
So, this news was so unexpectedly promising since it meant there might be some future supports. It means we might get some extra help addressing some needs and working on different skills. The skills he will need to have when I'm no longer here to nag him to work on. It meant he had been given the secret handshake to enter through the special portal to those selected--those deemed eligible. So incredibly sad and frustrating that we have to endure these battles and paper wars to get things for our kids. It leaves us weary and worn at times.
But sometimes...when it works in our child's favor for a change...it renews our faith, even if for just a little while. It can make you even feel hopeful.
Sunday, March 18, 2012
I spend a lot of time teaching Pudding skills that I hope will prove useful to her in the future. Sometimes I teach her things that are also useful to me right now. Earlier this year she learned how to make her own bed. It is great that my girl at 5 is managing something my mother couldn't get me to do at 15, and most days I take more than a little pride in her achievements.
There is a downside, of course, waiting to bite. Some days we're running late, but Pudding insists on making her bed before leaving the house. As I wait with the utmost impatience, I'm reminded of the old adage, be careful what you wish for.
Now the solution would be to organize ourselves better so that the bed-making was taken care of long before we need to set off. But being organized isn't my strong suit. I blame my mother- she didn't even teach me to make my own bed until my late teens, my lack of organizational skills is entirely her fault! Just kidding (Mum!) and in truth, who cares about being a few minutes late for school when such essential learning is taking place right at home. Not just domestic chores, but time-management and planning.
Then there are other things that I haven't taught Pudding. Some things I'm not sure how to teach, or I'm not sure if they should be taught. I walk a line between deciding if something is a necessary skill, or if it would be trying to force neurotypical ways on an autistic brain. I read accounts by Autistic adults, but my ultimate gauge is my relationship with Pudding. I imagine having conversations with her in a decade or two, in which I justify my actions.
I have no qualms about teaching her to make a bed. She'll thank me one day (thank you, Mum). But what if my efforts were to go too far? What if she felt forced into acting in a way that isn't her, and doesn't make sense to her? Some things aren't black and white skills, but a whole murky grey area. A sense of what is appropriate may differ vastly from person to person.
For a long time, if I was sick, in pain, or crying with sadness, Pudding did not seem to show empathy. I'm not saying she didn't feel empathy, just that she wasn't expressing it in the way I expected. But expressing empathy in my (neurotypical) way, was not something I felt I should teach.
Perhaps as she got older, I'd tell that people expect others to behave in certain ways, but only at the point I felt I could do that without Pudding feeling judged or wrong for expressing herself differently. I can tell from the awkwardness of that sentence that I'd struggle with that no matter how I tried.
Fortunately, for me, Pudding has lately begun to express empathy in a very typical way. Last week when I mentioned I had a headache, Pudding got out of her chair, crawled into my lap, kissed my forehead twice and told me she was making it better.
Would you believe me if I told you it worked? And it took less time than the tablets I'd already taken too!
I didn't have to wait too long for this latest development to strike back. That same evening as I tried to get her to go to sleep, Pudding tossed and turned and eventually got out of bed. When I asked what was wrong, she let me know that her doll was too hot, and therefore she had to take off her pyjamas and replace them with a nightgown, which took her some time to find.
I felt my headache creeping back the more empathy she expressed regarding Kelly doll, empathy looking a lot like a tactic to delay going to bed.
Of course, sleeping by herself is another skill we haven't yet figured out. If that one were to bite back too, I wouldn't notice...I'd be too busy catching up on all those sleepless nights in a galaxy far, far away.
If you ever need an in-your-face reminder of just how a-typical your almost-sixteen-year-old, see what he does when he’s sick. Rojo came down with a nasty cold and generously shared it with me. We spent the next three days coughing, sneezing and blowing our nose so much we went through not one, not two, but three boxes of Kleenex in as many days.
Rojo watched “Dora the Explorer.” Rojo watched “Lilo and Stitch.” Rojo watched shows aimed at the preschool set for three days straight. When he wasn’t playing ice cream truck songs from YouTube on his iPad. And hugging Elmo, his “son.” And wearing his Sesame Street T-shirt that used to be mine but I gave to him on one condition “It’s just for sleeping in.”
He was so calm that for three blessed days the constant thumping, tapping, humming, that characterize our house when he’s home, stopped. When we’d both be so bored we could scream, we’d go downstairs and he’d help me make tea. He’d pick my mug. He’d pick my tea bag, and when I’d absent-mindedly move to the couch forgetting the tea we just made, he’d pick it up and bring it to me. Carefully. And super sweetly. With a smile on his face that beamed pure unconditional love for me.
On Tuesday he felt well enough to go back to school – I felt, if anything, worse, so the timing was perfect. Except it wasn’t perfect.
I found myself alone, with nobody to say, “Your nose is running like a faucet.” Nobody to say, “You’d forget your head if it weren’t screwed on.” Nobody to bring me my tea and smile.
He wasn’t here, and I missed him.
Friday, March 16, 2012
I wonder about my daughter’s road to self-advocacy. I wonder how one directs her own life, chooses and executes a career doing something meaningful and rewarding to her, how one decides how and where she will live, who she will surround herself with, and how she will spend her time – I wonder how this is done amidst alternative communication, alternative cognition and a one-of-a-kind attention span.
But I do not worry.
I hit send on an email informing the rest of her IEP team that Addie would be taking part in, and contributing to, her own IEP from here on out. She’d been present in the past, but did not actively participate. She’s in second grade now and we agreed it’s time she had a say. We weren’t certain how this would work.
Addie’s IEP team is stocked with believers, critical thinkers, measured risk-takers. We have had our moments, but I wouldn’t trade any of those in for where we are today. The IEP meeting was an amiable, productive one, with much of the collaboration among us done in the weeks beforehand. We don’t have the kind of IEPs I hear about that involve contention, bombshells, part 2, and part 3.... A lot went into (and continues to go into) arriving at this positive, very teamy approach, but it’s right where we want it, right where it does the most good for the one whose future we gather to envision and support. I am grateful for that on a daily basis.
Clearly delighted to have a room full of people that work for her (because we all work for her), Addie made the most of her position as boss. After sitting with us at the table for quite a while employing various tricks to ensure we appreciated her presence, she began to move around the room a bit. While her iPad grabbed her attention intermittently, alas her communication device did not.
Though our focus on Addie was sporadically individual and collective during the process, it appeared she had no interjections of her own on the topic of her education for the next year. Internal debate ensued in my head and heart about whether to ask a direct question of her in the hopes of an answer, or to leave it open for her and not limit what she would contribute to the parameters of my question. I willed someone else, preferably Addie herself, to be the one to bring her into the discussion - the discussion about her.
Meanwhile, our analysis and hopeful plans where made official: plans for the next steps with her communication device, strategies for extending the great literacy foundation she’s demonstrated this year, discussion of her powerful inclinations towards science and music, deliberation on how to leverage her absolute devotion to technology in a broader range of academic areas, anticipation of what third grade will hold for her – and what she holds for third grade - as she continues to access the general curriculum in the least restrictive environment for her – the regular classroom.
As business wrapped up and the tone lightened even more, all eyes settled on Addie, as she would have it. With lightening quick judgment, she recognized this as her time. She stood up and stepped backwards, positioning herself right in front of the only door in the room. No one would leave now.
A question was asked or a comment made. I don’t know what and I don’t know by whom. [I asked my husband to read through this and his only comment was that it was me who asked if she had anything to add. I have no recollection of this, so it must remain relegated to brackets.]
Her crescent eyes arch closed as the corners of her mouth pushed her cheeks up. She bent slightly and tightened her fists – this was to be a full body smile. Expertly executing dramatic pause, she held us at bay a few moments longer.
When she was ready to pull the trigger, her right hand shot up to her forehead, pointer resting briefly above the temple before flinging out and forward. It was accompanied by a barely perceptible tip of her head in the same direction. Full body smile unaffected by this concise monologue.
In delighted unison, her IEP team interpreted her American Sign Language; together we gave voice to her declaration. In this statement, she both summarized the entire IEP meeting and threw down the gauntlet for the coming year.
And so I wonder...
But I don’t worry.
Monday, March 12, 2012
Well, I've been a day late with my post before, but this is the first time I've gone two days. Sorry. Life of a way-too-busy somewhat burnt-out autism parent, you know?
And I also have to admit, I have been having a hard time coming up with a topic that fits in here over at a place named "Hopeful." It's not like I'm in the dregs, in the hope-less place. I'm just at loose ends, overwhelmed by all of life's demands; feeling like I am wearing too many hats and doing nothing like a good job in any of them.
Tonight, at dinnertime I thought: "Really? Do I REALLY have to feed them? I just don't know if I can do it. Can't. make. one. more. meal. for. kids. If I just told them to forage for their own dinners would they look no further than the candy jar and potato chip bag? Probably."
If we were to change the name of this site to "Overwhelmed Parents"? Posts galore! So folks, sorry, this isn't one of my thoughtful, carefully crafted essays on an important topic. Just an exhausted parent spinning her wheels, trying to fill some empty space here so I don't feel bad about crapping out on yet another commitment.
And some of why I'm so busy is really good - I'm the producer of the first annual New York City Listen to Your Mother Show this May, and even with casting and first rehearsal behind us, there is SO much to do in the next 2 months.
And then there's all the other, not-so-really-good stuff, including Jake's IEP meeting, sprung upon us with the minimum 2 week notice, yet again (ALWAYS). And my elderly mother, fading and growing frailer, seemingly by the minute, needing more and more and more just as I feel capable of giving less and less and less. (And there is just me, I'm her only child.)
And Jacob is going through a VERY annoying phase of GROWLING all the time - or talking about growling when he's not actually doing it. He has even substituted the word "Growling" or "Growl" for other words in the songs we sing to him. So, for example while I'm singing "Twinkle Twinkle, little star" He's singing "Twinkle twinkle, little GROWL." At least it's not "poopyhead" this time.
I understand he finds his life to be frustrating. I feel much desire to growl too. But, being autistic, he goes right ahead without thought to its appropriateness, while I confine myself to deep sighs.
Finally, there ARE things lately that DO give me hope - like Ellen's lovely contribution to the "End the R-word" campaign earlier this month, that was given national exposure.
And Jacob himself gives me hope, my lovely boy with the indomitable spirit, whose family, friends and teachers all love him to pieces. Even if he does growl his way through the day.
Maybe I should try growling too, sometime. It seems to be deeply satisfying. (Jacob is QUITE loathe to give it up, in spite of draconian "NO TV" measures to get him to stop.)
If you can't beat 'em, join 'em - right?
Varda writes about "birth, death and all the messy stuff in the middle" on her blog "The Squashed Bologna: a slice of life in the sandwich generation" She also tweets as @Squashedmom. Varda is proud to be a Hopeful Parent.
We moved our clocks forward this weekend and this week in our neck of the woods is bringing on some unseasonally warm temperatures. The extra sunlight coupled with the good weather will find us outside a good portion of our day. I love spending the time outdoors and especially enjoy the extra hustle and bustle as neighbors work to get their yards ready for spring.
This year I hope to plant some vegetables with the girls and so I have to start planning for the garden soon! Having a child with a brain injury has made me very aware of the effects of food on our body. I hadn't given much thought about where our food came from and what could be in it before Emma. I had always assumed that our food supply was fine and then I started noticing the news was increasingly warning of recalls and illnesses from certain foods.
After doing a lot of research our family committed to source more organic foods. This is easier with the change of weather because local farmer markets spring up all around us. We are new to our neighborhood and I'm really looking forward to visiting the farm stands and meeting the farmers. I plan to visit local pick your own farms with the girls and teach them more about the food they eat.
Adding a home garden seems like a great step in keeping our commitment to more organic foods and not breaking the budget. Food costs seem to be skyrocketing and our food budget is not getting any larger! I'm hopeful that our home garden will be successful and fruitful! Bring on the sun!
Sunday, March 11, 2012
At the end of fall semester, one of my students declared in my Business and Professional Speaking class: “A big shout out to Dr. Iz [me] for keeping it real.” I can’t say it was one of my proudest moments as a teacher, especially given the 15-weeks prior that we had been addressing the importance of formality and etiquette. But then, maybe just like parenting, sometimes my teaching doesn’t quite look like what I idealized-it’s often not neat, tidy or seemingly relevant. After a few months of this shout out from one of my favorite students, I decided it was he who was keeping it real. Even with all the niceties and formalities of the world, sometimes we just have to say it like it feels.
When I last pounded out my lame monthly post for Hopeful Parents, I was hours from admitting our Sylvie back to the ER for more upper respiratory distress. She stayed in the hospital for 4 days, and now oxygen is another mainstay to add to the array of other medical equipment that litters our house. This winter has knocked us on our ass, and we have hit the wall of chronic caretaker fatigue. But even in that moment of sheer distress (e.g. midnight arguments with my long-term partner, assuring Sylvie’s twin sister that is not her fault that Sylvie is sick, having zero tolerance for petty office politics) I try to receive the rawness and realness of my everyday life:
- Sylvie’s sister boldly corrected the woman at the counter of the local science museum when she referred to Sylvie as a toddler. “My sister is NOT a toddler, she just can’t walk and talk” declared her sister. You go girl. Tell it like it is!
- I was near tears at the recent Burlington Mardi Gras parade when a Special Olympics Vermont float past by. The message on the banner: “Don’t Say It” followed by the word “Retard” printed inside a red circle with a diagonal line. The float had a bunch of volunteers and S.O. athletes. I just loved that image of kids with disabilities so out there in the public demanding to be seen as people and not for their disabilities.
- I spent 20 minutes on Friday ensuring that my daughter would be included in the public transportation event to the local chocolate shop—I wanted to be assured that she would be on the bus with her classmates (and that she was going to get her due chocolate!). The school and public transportation staff were great, but it wasn’t how I planned on spending my morning.
- Last month, my sweetie and I shared with some graduate students at our local university what it is like to parent a child with a degenerative disease at the invitation of our fabulous pediatrician. As we left the room and walked down the hall after our discussion, I heard one young woman wailing. Our story is sad. And while I don’t want to make other people cry, I’m glad to share the challenges and successes of caring for our daughter with others in hopes they may learn and rethink what they know about disabilities.
I wish I could be more upbeat these days, but parenting a kid with severe medical needs is exhausting. And if I yell, cry, sleep, drink or eat too much, at least I’m keeping it real. When I take a long walk along the shores of Lake Champlain, or play hard with Sylvie’s twin sister, or sit on a friend’s bed on a sunny Sunday afternoon talking, my life is also real.
Kirsten is a professor of Communication Studies at the State University of New York and the mother of 6-year old twin girls.
Thursday, March 8, 2012
I have to find a school for Ramona for the fall. This is no easy task. She is currently in kindergarten and at the moment she has a full time Educational Assistant to help her make choices that ensure both she and the children she is with remain safe at all times.
I called my school of choice the other day and had a long conversation with the principal, she was judgmental and cool, to say the very least. I let her know that we were adopting an older child and had decided not to enrol Ramona in school immediately because the time she will have with me during the day will do a lot for her attachment and will hopefully help once we do put her in school full days. She told me she thought I was making a mistake and if I was not considering school perhaps I should consider daycare. I told her that I did not think that Ramona’s needs could be met in daycare considering she currently had 1 to 1 supervision at all times. She was less than understanding and asked if Ramona had been formally identified. When I told her that her IEP was for behaviour her tone got even more negative and we discussed alternate school options as this school is cross boundary and thus they are not obligated to take any of my kids.
She encouraged me to register Ramona (for the fall) with the town school now and then if I still wanted to send her to the country school to contact them in August when they would have a better sense of available space for cross boundary kids. Then I mentioned my other 2 kids and their grades. She asked about IEP’s and I mentioned that my older son had one but it was mostly just a matter of routine at this point and there was little extra, outside a little math support that he required. When I mentioned that Fudge did not have an IEP she commented aloud, “Fudge of Fudge and Calvin who went to Courtland”.
I answered in the affirmative and let her know that I was their Mom. Her tone immediately changed and she became friendly and inviting as she talked to me about the boys. She had been their principal; she was excited to hear that they were doing well. She became engaged in the discussion and mentioned emailing some people that had worked with the boys to let them know that they were doing well. It was like talking to a completely different person.
I hung up feeling thoroughly confused about the conversation but also feeling as though I had been judged because I am parenting a child with some extreme behaviour issues even though I part of the solution and not the cause of the problem. Why is it that we are judged rather than heard, as if the special needs of child who was abused or neglected are any different than the needs of any other special needs child.
J writes about the joys and challenges of parenting older children adopted from foster care at Stellar Parenting 101
Tuesday, March 6, 2012
I’m embarrassed by myself.
Generally speaking, I’m a big fan of the effect adversity has on writing. It’s not hard to come up with funny jokes when you are consumed by rage of various sizes.
Lately, though, I feel like there’s a tone to what I write. You know the feeling. When your neck starts to cramp up from the inside as your child (friend, neighbour, local politician) starts to whine. It’s like being gaffer-taped to a wall while highly tuned racing cars zoom past.
So, despite Billy’s health issues and the (slowly reducing) desire to stick expired seafood on the undersides of certain people’s vehicles… I’m going to quit my whining and reveal my genuine embarrassment (and the growth that has come from it) instead.
Last week, we returned to Dr Poo 1. I didn’t let him know I had been unfaithful (by visiting Dr Poo 2), though I am sure there’s an equivalent of the oestrogen telegraph among gastroenterologists. I don’t want to think too hard about that.
Dr Poo 1 says Billy’s reflux is chronic (odd, the other guy says it doesn’t exist) and we should try more drugs. He says I know you hate the laxatives but please still use them sometimes. He says good on you for going organic and fresh and adding all those supplements (but please confer with your biomed doctor a lot). He says beware of the fibre loss from going GF (despite the fact that he knows well that Billy does not eat bread/pasta/cereal by choice anyway… or he would if he read his file).
Dr Poo 1 also says the addition of seizures in Billy’s life means we have to start the process of investigating metabolic and/or mitochondrial disorders.
I’m oddly cold, in the face of this suggestion. We will, of course, investigate and deal with whatever we find or don’t find. It’s a long road. It is what it is. I’m not embarrassed by this trip to Dr Poo 1. Thankfully.
The embarrassment comes from the ease with which we have been able to make some serious inroads into changing Billy’s (and our) diet.
I love the change. I hate the sneaking suspicion that we may have been able to do this sooner, and it may have had an effect earlier.
Quick backstory – when Billy was under 2 years old, we went to a well known biomed doctor here in Sydney. He creeped me out so badly with his scary giant Anthony Robbins sized hands and his pronouncement that yet-to-be-diagnosed Billy was indeed ‘profoundly autistic’, that I ran a mile from his office, and from anything biomed related.
I’m not proud. Actually, I’m embarrassed.
Armed with an indignant air, I continued to ignore good advice for way too long. Being me, I asked for information a lot. I just stored it neatly in the same place in the back of my head that my own needed lifestyle changes languished… with cocktails… on sunloungers.
Billy became chronically constipated. Billy developed Transverse Myelitis. Billy was constantly sick. Billy developed seizures. What was I waiting for?
It’s not like I was sitting on my hands. I was trying. I was cutting out this, and trying that… but we were also in deep denial.
There was a lot of sugar. A lot of chips (French fries). A lot of good stuff missing. It felt like it was waaaay too hard to make quantum change.
Many kids on the spectrum, Billy included, are picky eaters, sensory eaters, self limiters… the labels go on and on. It is scary. You think they are going to fade away. You think the delicate balance of functioning and behaviour that you do have is going to be upset if you insist on change. You think the day is too damn hard to make it even harder by taking the sprinkle covered cookies away.
We are about eight weeks into the change, now. It’s slow (literally one sniff at a time), but it’s working. Oh, how it’s working.
I am not going crazy here (now there’s a sentence)… I have just vastly increased fruit/vegetables buy building on the stuff he would eat. Bananas (always overripe) have become smoothies packed with other fruits, seeds, nuts, good fats. Carrots have morphed into juice, muffins, puree loaded with supplements and good oils. You get the idea.
He is asked to tolerate the new food just sitting on the table next to him. Then he has to smell it. Then lick it. Then take a mouse bite. Then a monster bite.
That’s it. Not rocket science.
Yes, he is resistant. Yes, he gags occasionally. Yes, I am bribing him with massive reinforcers and consequences. Yes, he keeps on going.
Tiny steps. Tiny steps that get bigger the next day, and even bigger the next.
In eight weeks, we have increased his food repertoire 100 fold. In tiny tiny bites.
I’m not doing this to prove anything to anyone (least of all him). I am doing this to improve his health and physical functioning. As fearsome a foe as autism can be some days, ill health is a waaaay bigger one.
It is possible.
I am embarrassed at how possible it is.
Actually, I’m lying a bit. I am doing this in part to prove something to others. Here’s why.
You go to the doctor with your autistic child who is… stressed, constipated, sick… you name it. They ask, ‘how’s his diet?’ You say… ‘Hmmm, well, he is autistic’. They go, ‘huh…? Does he have a multi-vitamin?’ And you go, ‘Hmmm, well, he is autistic.’
It is very hard to remain credible when you are not really trying. It is very easy to be embarrassed.
Autism makes a lot of stuff feel impossible. It can’t make good health impossible. Actually, it does, on a cellular level for lots of us, so that should make us even more determined to get diet and supplements right. Right?
I’m not saying we were terrible 100% of the time. I don’t believe any parent thinks that a steady diet of crap is a good thing. But I do know we fell into long periods of not great dietary habits. And it didn’t help any of us. I’m also not saying we don’t still eat the fries. We do. We just choose our moments, and hope that over time, feeling better will help us all to make better conscious decisions about our health.
So, vive la change, for now.
The call of the sprinkle covered cookies is strong. I hear it in the wind some days. Some days, I answer it. Other days, I trick it, by putting diversionary sprinkles on high fibre fruit pulp muffins…
It’s life, by a thousand (sprinkle) cuts.
Valerie’s increasingly randomly ravings can be found at Jump on the Rollercoaster.
Monday, March 5, 2012
Worry about our kids future is something all parents do
But for mums and dads of special needs kids –worry takes on a whole new dimension
We worry about what the future will look like.We worry who will love them, when we are gone
I thought about worry yesterday.
When I read a friend’s blog and she talked about the worries of her daughter’s future .
Another mother commented on her post by linking on to another article.
In this way, I landed on this beautifully written depressing article.
You know the kind of article I am talking about
The first-person account of a worst-case outcome
As soon as I clicked on the link, I recognized it.
I had already read the article 3 years ago .
It was such a beautiful article written by a sensitive and caring mother .
I remembered how sad and hopeless it had made me feel 3 years ago.
But not this time.
For now I have realized, the importance of censoring what I read on the internet
Of reading, but not internalizing
Because many of us have the “extrapolation problem”
We read about one bad outcome and imagine that to be in our future
We have one bad incident with our child and we extrapolate that into an extreme.
The truth is that no one can predict our kids’ future
There are no guarantees of what is to come
Any rational being can see that this generation of autistic children is being supported like no other generation and so we really cannot predict based on past generations.
But even besides that point
We should hope for a better tomorrow because a hopeful way of being, is an end in itself
A most powerful choice is our choice of what we focus on and what we think about
What we focus on is what will grow
I am constantly being interrupted in the writing of this article as my son is urging me to pack a picnic.
I listen to the eclectic list of items he thinks should be in the basket
I think how grateful I am that this magical child has taught to me to live in today
For its truly a gift of being on this road .And of being mum to R
Tomorrow will come when tomorrow comes
For now there is the joy of today
“Its not what if.. Its what’s now “
I write about love, life and autism at Floortime Lite Mama
Sunday, March 4, 2012
Ack. A few days late. No, I’m not pregnant. Just tired and late to post this month. Mostly from chasing my previously less mobile four year old around. As exciting as it is to finally see him walking, I feel like I have a one year old all over again. I was so worried about him falling and damaging his shunts if he hits his head (has not happened). I worried that his siblings would knock him over (has happened). I worried that he would be so scared if he fell that he would not try to continue walking (has not happened). Instead he has consistently asked for help in standing and is motoring all over the place! Now what?
His newfound freedom is giving him attitude too. “I do it!” “Don’t help me!” It’s music to my ears. I can tolerate any amount of attitude like that. I know that one day that will be his biggest asset. For right now though, I need to take my biggest asset back to the gym so I can keep up with the physical demands of his mobility.