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”.
Saturday, April 28, 2012
The White Notebook
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”.
The Dance of Life
I would like to thank Arey's mother, Maria, and Rachel's mother, Donna, for sharing this beautiful photograph. As you will see, because of these women, and their handsome teens, I am a Hopeful Parent.
Rachel and Arey are your typical high school students who, like my son, Nicholas, just happened to be diagnosed with Prader Willi Syndrome.
PWS is a complex genetic disorder affecting the 15th chromosome. Some symptoms include: low muscle tone, high pain tolerance, difficulty regulating body temperature, hypothyroidism, behavioral and cognitive challenges, speech difficulties, low metabolism and seizure potential.
But perhaps the most frightening aspect of this syndrome, is the lack of ability for individuals to control their eating. Children and adults diagnosed with PWS are always hungry. Physiologically, they lack the ability to control their hunger and if left unattended, will eat life threatening quantities of food. As a result of this flawed hunger signaling, all individuals diagnosed with PWS must live in an environment where food is secured. At home, refrigerators and pantry cabinets must be locked. All access to food throughout the day and night, must be controlled always, for the rest of their lives.
Ironically, at birth, most children diagnosed with PWS, experience low muscle tone making it difficult for them to feed. Most are diagnosed as "failure to thrive". My son, Nichols was no different.
I spent the first few years of my son's precious life living with a constant and crippling state of fear and an overwhelming sense of sadness.
How could the future be happy for a child born with this diagnosis?
I resigned myself to living this unhappy life that was thrust so mercilessly upon me.
I plodded through each day, sad and depressed, a darkness seemed to follow. I was anxious and angry. An indifference kidnapped my body while fear suffocated my hopeless heart.
But soon I realized, that caring for a child diagnosed with special needs required an almost superhuman level of endurance. There were doctor appointments, meetings with specialists, surgeries and therapies. If I was to survive this chaotic lifestyle, this life-draining fear and unhealthy sadness would somehow need to be diffused.
And so I reached out to other parents.
I listened to these special few, who, with their careful words and thoughtful advice began to heal my wounded heart.
They gave me tools and techniques for handling the difficult aspects of this bizarre syndrome. They showed me photographs of their happy children and told me of their fulfilling lives.
Yes, it would not be easy, they said, but encouraged me to embrace and "see" that underneath the great sadness of this syndrome, there was also great beauty. The secret they said was to silence that fear, to look for the beauty and live each day knowing there were others who understood my difficult life. They told me there was always hope.
And so these strangers have become like a family to me. The happy news of their children's success challenges me to put aside the feelings of sadness and regret, to see what is truly important in life. I am inspired by their stories.
I would like to share one of these stories with you.
Rachel and Arey met about 5 years ago at the PWSA of Pennsylvania chapter meetings. They see each other at these outings and events and enjoying speaking with each other on the phone.
"I remember when he was born, thinking this day would never come," said Arey's mom, Maria.
She explains that they danced all night and had a great time together at the prom.
"Rachel has three older sisters who all have enjoyed going to many dances. It was so nice to see her enjoying herself too." says Rachel's mom.
They danced so much throughout the night, that both complained of sore feet. The dinner they said was delicious. Both parents pre-ordered their dinners, orchestrated the entire night and made sure they had a one-on-one aide.
"I asked Arey who he sat with -and he said no one. He and his date were alone. I felt that stab of pain and grief - but they did not! They thought it was great to have the table to themselves," Maria explained.
"Rachel especially liked being able to stay over Arey's house in his sister's room. She got to spend the whole next day hanging around with her boyfriend, who she hardly ever gets to see," Donna added.
"Arey is the youngest of six children. He has three older brothers and two older sisters, who have all contributed to his growth and development. I could brag about all of my children, I am so proud of them all. Arey is an incredible young man. He is kind, thoughtful and loving. We were told that he would not have a sense of humor so we teased him mercilessly in an effort to teach him. We may have come to regret it as he is now sarcastic and humorous." says Maria.
"Arey also enjoys reading. He has a wonderful vocabulary that surprises me sometimes....again, we were told he would not be able to have much control over this - so we used more difficult words and explained the meaning of them from the time he was little."
Maria explains that he will be in a program in high school that will help him learn job skills next year and after he graduates.
Hobbies for Arey include collecting elephants and playing video games.
"He has over 200 elephants ranging in size and make. His smallest is less than 1/2" and his biggest is 2 feet. He has elephants made from wood, fish bones, glass, jade, ceramic, and clay, one that Rachel made for him," says Maria
Arey enjoys video games on the computer and other game systems. He pays for them using his own money that he earns from doing chores. He cleans the yard after the dogs, weeds the garden and lawn, and takes out the garbage.
Recently, Arey has begun a weight loss program and has lost an amazing 35 lbs. Once weighing in at 212 pounds, today he weighs an incredible 177 lbs. His trick, Maria says is having everyone on the same page in the house.
"Arey has the desire to loose. He is at the age where it really matters to him. He wants to loose the weight and I am very surprised at how easy its coming off. He evaluates what we are going to eat and knows how many calories he can have. We still lock. He needs it and wants that control. But I never thought that he would understand calories or want to lose weight. We have been working on making good food choices for a long time - and at this point -it's all clicking for him. Not that food is not a constant struggle -or that given the opportunity, he would pass on sneaking food - but this is more than we hoped for," says Maria.
Maria's thoughts on PWS?
"Anything is possible until proven otherwise! Our children write their own stories and make their own destiny. We are just along for the ride, which has its ups and downs and level outs. But in the world of PWS, those ups are so much more glorious and special."
I asked these Moms what advice they would like to share with other parents,
"Life is not all doom and gloom for those with special needs,"says Donna.
"My wish for other parents - that they have hope," adds Maria.
Listening to these special mothers has helped me to quiet my fear.
Thanks to Rachel and Arey I am no longer afraid of the future.
I see them dancing through life happy, healthy and unaffected by the thoughts of others.
I see there is much to enjoy about life.
Many thanks to Arey, Rachel, Donna, Maria and their families for sharing their story with us!
Please feel free to leave a comment for Rachel and Arey.
Wednesday, April 25, 2012
Being Special & Special Treatment
It came through a couple of channels and was offered to us because the kids have a life-threatening condition. In fact, they've both received a Make-A-Wish wish and they've received countless gifts from charities that donate to the hospital.
It feels strange sometimes accepting these perks, but yet we do. We don't mind giving them the experiences we wouldn't be able to provide. For my kids, who will fight to have a less than average lifespan, if I can give them one chance in a lifetime, you bet I will.
I think for the kids, who work hard at blending in, having special needs and getting special treatment are at opposite ends and they struggle to merge the two. I've written a lot about how both of them are noticing their differences compared to their friends but more so for my daughter. It's hard for her to reconcile it all because she likes being treated special in a lot of ways.
She likes testing pullout, small group learning, the fun in speech therapy, and of course, blimp ride like opportunities.
Geez. Even fun is complicated.
Julia is mom to two amazing kids on borrowed kidneys from two women who are incredible friends. She blogs at Kidneys and Eyes, Co-founded Support for Special Needs, Writes at Aiming Low, and sells cool stuff at Slice of Crazy Pie.
Friday, April 20, 2012
One Year Later
We found a developmental pediatrician who got down on our level and told us, “I know what this is and I know what to do about it.” He helped us to our feet. He comforted my fears and assured me that there was progress to be had. He gave us a road map – nothing more than a slip of paper with a therapist’s name and a couple of prescriptions – and told us that he would be there to guide us when we needed him. So he has.
We then added a second speech-language pathologist just a month ago who just gets my boy and helps me brainstorm new ways to connect with him. Her ideas for Floortime interactions and her creativity always astound me.
This year has also seen me transformed from a person who wanted to huddle up in a corner and wish the world away to a person who feels like she can take on anything for the sake of her boy. The personal growth I've experienced is something of which I can take great pride.
I also have learned that autism is not a sprint. It is a marathon. We will be running for a long time, but it has made the milestones all the more rewarding.
There is reason to believe that the sky's the limit.
Jeanie is a former engineer turned stay-at-home wife and mom to an amazing 3-year old little boy on the autism spectrum. After her only child was diagnosed at 24-months with autism and an alphabet soup of special needs, she began to write about life parenting a very young child with special needs with honesty, optimism, and as always, a touch of humor.
When not posting here, you can find Jeanie at her regular blog, Reinventing Mommy. To follow more of her ramblings, like her on Facebook!
The school bus
It makes sense, really, for her to take the bus. Nearly all the kids at her school go there by bus. She started school well over a year ago, and since then I’ve been taking her there and back myself. I liked doing it (at least in principle) – I liked talking to her teacher each day, and seeing for myself that she was settled in her classroom. But it was a daily challenge getting two kids to two schools in completely different bits of the borough, picking them up again, and trying to fit in a small amount of my own work in between. The bus allows a bit of breathing space, and an extra hour or two has magically appeared in the day. Waving Amy off, I have that old, well-remembered feeling that I had when my children were tiny and I left them with child-minders for the first time – liberation and guilt all mixed up complicatedly together.
It’s hard, though, to let go of Amy. I couldn’t quite believe I was doing it. After she’d gone off on the bus the first day, I found myself – feeling slightly foolish – behind the wheel of my car, following the usual route, just so I could see for myself how it all worked. I lurked, wobblingly, in the staff car-park, waiting for the bus to arrive and watching as the doors opened and Amy descended, to an effusive welcome from her support-workers. I was discovered, of course, by staff who were simultaneously amused and sympathetic at my antics. In my head, I'm glad that Amy’s at such a good school, where they understand her and meet her needs so well. But it still hurts my heart that she needs to be there, that she can’t go to the same school as her older sister and live the same untroubled life.
As with so many things in our ‘special needs’ life, I struggle to work out what my job is. Is it to protect my special girl and keep her with me at all times? Or is it to let her go a bit, just as I do my other, ‘typical’ child, and encourage her to be as independent as she can? For Amy, ‘independence’ will always be a relative concept. She won’t be able to do things for herself, and will always need constant help. But independence is a state of mind. Even Amy, little as she is, needs a bit of space, to be with her buddies, to not have her mother hovering anxiously over her all the time.
I wish she could tell me what she thinks of the whole thing and what it’s really like for her. But yesterday morning, as the bus pulled up outside our door, I said “Amy, here’s the BUS”, and she beamed. And when she came home, I asked her if she liked going to school on the bus, and she beamed some more. It’s a different kind of ‘letting go’ with Amy than with her sister. But letting go is good for all of us.
Thursday, April 19, 2012
What is a Diagnosis?
On the Job Training
Wednesday, April 18, 2012
A Picture is Worth Too Many Words
Now that unit stores photo albums and pictures in frames I no longer want to display, but can't bring myself to pull from the frames and do something else with. The photo albums go back 49 years, all the way to my baby book, but by and large they are of my two children covering their well documented lives. There are also all the calendars I made, each month highlighting the events of that month, carefully cropped and coordinating scrap booking paper meticulously placed behind each one. You don't even want to know how many VCR converted to DVDs I have on shelves, featuring every single thing my kids did or ever thought of doing for the first 10+ years of their lives.
I nearly drove myself crazy keeping all that up for years. And years. And years and years.
Now I've got more time than I've ever had before, and I've all but stopped taking pictures. I think I took three total during the various Christmas celebrations. Taken maybe three or four since Christmas. They're still on the camera. No desire to print them out, put them in an album, and add them to the orange cabinet.
Of course there's the computer, and I do have hundreds of digital photos on there. Don't look at them or refer to them much, either.
We just had Easter. Every year my son, Rojo, has me hiding plastic eggs filled with his favorite candy (mini Reeses and Snickers) for weeks ahead of time. We talk about the Easter Bunny, Devohn, and how he'll get into the house, where he'll hide the eggs, where he lives, and the fact that he's like an uncle, or a cousin, or some such relative of Rojo's. We explore the familial connection ad nauseam. My husband, STM, and I had been at our church's Easter Vigil until way late Saturday night, and when Rojo bounded out of bed at 6:00 Sunday morning, it was all we could do to caffeinate before we had him start the search, I just never grabbed the camera.
The old me would have had the camera and camcorder all laid out ready to go. I would have made sure the batteries were charged. I would have made sure the camcorder had plenty of tape left. I would have assigned one to STM and I would have done the other one. We would have had our faces behind cameras the whole time, trying to get the right shot, and entirely missing the joy on the almost-sixteen-year-old's face as he found the eggs that Devohn had hidden.
I realized later that day as I was cleaning up the kitchen from the Easter dinner, that I'd subconsciously decided awhile ago to shut down the documenting of our days on film. I never go look at the old pictures, I don't even want to. It is actually traumatic. And as sweet as his face was, and as much as I was tickled to see him so happy, I don't really want physical reminders that he's not a typical teenager on Easter. It's great that he isn't, but it's painful that he's not, and I don't need to rub my own nose in it anymore.
Carrie is a parent and advocate of a child with special needs and even more special gifts. She blogs at http://carrielink.blogspot.com/ where this is pretty much her favorite topic.
Tuesday, April 17, 2012
Petra is a Writer, Mum of Two, Wife to One... Fighter for a better Future for her child with Autism and the one without.
She blogs at http://foraoisdarach.blogspot.com .
Roller Coaster Ride
Raising a child with special needs has basically been a roller coaster ride of emotions- forever altering the way I perceive the world. It has taught me to appreciate all of my blessings, to not take for granted even the smallest of victories. What some parents may take for granted, those of us with special needs children treasure.
It has given me a whole new level of sensitivity. Now words that were once, just that "words"- are like knives to the heart. "Retard and short bus."
I cringe just typing them.
And....this is the hard part. The personal part. The part I'm most leery of revealing to anyone but my secret journal hidden in my underwear drawer. The part I'm afraid will offend someone or come off wrong- but also a very real part of my own personal "roller coaster" ride.
It has also brought me jealousy.
Why does my child have to work so DAMN hard to accomplish what comes naturally to other kids?
Why does my child have to cry and tantrum for hours and hours because he's frustrated and doesn't possess the verbal skills of a 2 year old when he's 6?
Why doesn't my child have a single friend, when kids his age are enjoying birthday parties and sleepovers?
Why does it have to be that people stop to smile and adore cute little infants, yet glare at my son and his 'odd' behavior?
.....and to each of these questions an inner voice replies "at least you have your son, you can hold him, and kiss him goodnight- not every parent can say that".....
...and we're back to the 'appreciation' I mentioned earlier.
Yup. Definitely a roller coaster ride with extreme highs and lows. However the one constant, never faltering, all-consuming emotion in all of this is love.
And as we all know- love conquers all. :)
Sunday, April 15, 2012
When Danny was a toddler, he didn't speak. In fact, that was my first clue that something was different about him. Sure, he babbled, but at 2, he still hadn't uttered a single word. When he did expand his vocabulary, every word was a hard-earned achievement. We practiced and modeled speech for Danny hours every single day. I dreamed about the day that my son would be able to communicate with me.
Now that he's older, Danny's speech is much more advanced, but still he rarely shares his feelings with me. He'll talk readily about certain subjects, like LEGO and Angry Birds, his two recent obsessions, but I don't often get much out of him about how his day was or how he's feeling. And when he is experiencing a strong emotion, he has enormous difficulty communicating. He often gets tongue-tied or uses language inappropriately, which makes it almost impossible to decipher his meaning. And he gets really annoyed if I grill him with too many questions.
In recent months, we have been making some headway; he has been telling me how he feels about things and offering up information to me like so many bits of treasure. One day, Danny excitedly shared that his teacher had made Bruno's cake from a story they had read in class. Another day, he declared that he wanted to buy his teacher a Valentine's Day present and listed possible gift ideas (LEGO sets were at the top of the list). In preparation for a field trip, Dan remembered to inform me that he needed to wear a red shirt.
This breakthrough excites me so much, I can hardly stand it. I feel like I am getting a glimpse into a different side of my boy. Like I am privy to some of his private thoughts. All these years, I have been waiting for Danny to let me into his head a bit, to share his thoughts and feelings. I have been imagining and daydreaming about what it would be like to understand my son better, to be allowed into his life more. And it has been amazing. I feel like I am bonding with him in a way that I never have before. And this gives me hope for him and his ability to self-advocate. I can tell he feels better too; he's less frustrated and seems proud when he can articulate his feelings.
So, why, why am I fighting back tears? Why are some of my conversations with him breaking my heart? Because along with his joys, Danny has also been sharing his disappointments, his fears, his struggles.
Often in the last few months, Danny has been coming home from school telling me how much he missed me all day long and that he hates being away from me that long. Last week, Danny told me that he has no friends at school and that making friends is really, really hard.
And just last night, we had that long conversation I mentioned. Danny explained to me in halting terms why he hates school, how everyone talks too much, how it just overwhelms him and gives him headaches, and how he can't really understand what is expected of him. And he topped it off with this: "Mom, I am just no good at listening to directions. I'm terrible at it. I try. I try my best, but I'm bad at it, and it's all my fault!"
All those times I wished and prayed that Danny could communicate better, I never considered that what he had to say would be very difficult to hear. I always thought that I would be able to help him more if he could adequately express himself. Somehow, mixed in with the immense pride at how hard he's worked and how far he's come, I also feel sadness.
Patty is a stay-at-home mom to three wonderful kids, all of whom have Sensory Processing Disorder. Her oldest son is also on the autism spectrum. She is a freelance writer and started a LEGO Social Club for kids on the spectrum last year. She blogs at www.pancakesgoneawry.blogspot.com
My daughter is 8, and has Autism. She is considered high-functioning, although there are some days I wonder if there is such a thing.
For the past few months, things have been good. Good at home, good at school. I was getting to know my daughter in a whole new way. She was more animated. Happier. Talkative. Sure, we had our moments, but overall things were better than they had been, well, ever.
But, Autism is known to throw curveballs, and a curveball is just what we got. Whether it is because we are facing down the end of the year, or another reason we have yet to uncover, we have been dealing with extreme behavior regression. My girl is going back into herself more. Wanting to be with us less. She is frustrated by the smallest triggers, and the child I got to know these past few months is no where to be seen.
And I am sad.
It is easy to get caught up in the regression. To watch your child almost flee from you, and feel despair that you didn't think possible. To shed tears because you don't know the secret to unlocking her again. To want to know why this has to happen at all.
But, I am trying to keep hold of the downright magical moments we have experienced these past months. I am choosing to believe they will return. We will work hard to bring her back. To figure out the needs she cannot communicate. To work through the meltdowns. To make her comfortable again.
Those good moments, they are precious to me. I hold them close, and they help me from sinking too far down.
I will fight for my girl.
She will be back.
Jen is the mother of an 8yo daughter with Autism, and a 5yo son, with BOY. Most days, she prefers Autism. You can find her blog at Still Looking Up and follow her on Twitter at @JenTroester.
Saturday, April 14, 2012
I have been doing a lot of waiting lately. I am not very good at waiting. At this point, I'd call it an "emerging skill."
I don't know if I've always been this way, but certainly after years of working in high-tech companies, where every email was answered within minutes (if not faster), I have grown impatient. I've been out of the work force for about five years, but Twitter has continued to fuel my need for instant gratification.
Our oven broke and is beyond repair so we had to buy a new one. Of course the one we want (dual fuel, baby!) had to be ordered so it won't be here for three weeks. So I'm waiting.
I'm waiting to find out if I'm going to be selected as a finalist in the Notes and Words essay contest. (Won't you head over and click "like?")
Last weekend, I started a small master bedroom makeover. I think I was so sick of waiting that I wanted a project I could complete in just a couple of days. I painted the room, put on a new quilt, and got a new rug. But then I found the perfect curtains on etsy, so now I'm waiting for those to arrive before I can call the project "complete."
I'm also in the somewhat nightmarish process of trying to get my son's IEP scheduled. There are seven people who are on the attendance list from school, plus my husband and me, and a very busy outside person we're bringing in. This week is spring break so it is nearly impossible to move this forward. There is nothing i can do do now but wait.
There's more - a lot more - and I won't bore you with the details, but they involve things like providing documentation to insurance companies, so I've done a lot of hurrying and scanning and faxing and mailing, and then? I wait.
I'm waiting for some bigger things too. I'm waiting for Moe's first real words. I'm waiting for the first time he calls me "Mom" or asks me a question. I'm waiting for him to be ready to use the toilet or eat with a fork. I'm waiting for the days when Moe's little sister Jelly starts asking about why Moe isn't like other kids.
There is, however, one thing I'm not waiting for anymore. I'm no longer waiting for Moe to stop being autistic. It may sound silly or obvious to some, but when Moe was first diagnosed, I believed, or at least hoped, that if he were delayed, that meant he could catch up. Now I know that being autistic is more than just being developmentally delayed.
So I'm not waiting for any miraculous "recovery." I'm not waiting for Moe to outgrow his diagnosis, or for us to find that one perfect intervention that will magically transform him into a typical kid.
Some may find this sad, but let me assure you it is not. It is, in fact, the only way forward. It is the only way I can truly accept, and perhaps even welcome, autism into our lives.
This does not mean I am not giving up hope for big things for Moe. I am never going to stop doing everything in my power to help him progress and succeed. But I am no longer waiting for Moe to be someone he can never be, or someone he never was.
Jen Bush also writes at her personal blog, Anybody Want A Peanut? Her piece, Lost, has recently been selected as a semi-finalist in the Notes and Words essay contest. She'd appreciate your vote!
Why Couldn't I Just Let it Go?
Jennifer is a mom to 3 children, one of whom is a different learner. She is passionate about all the things your mother taught you not to speak about in polite company: politics, religion, and public education. You can read her blog about her daughter's challenges and triumphs with hydrocephalus and learning disabilities, as well as the parental frustrations and joys of life at A Walking Contradiction, here.
Thursday, April 12, 2012
Coming up for Air
It feels really good to have a break! I think Emma must have needed it since most mornings she slept past 9 am. I still woke up early and used the time to catch up on phone calls and things around the house since when Emma is awake I really don't have any "down" time. That is just a part of being the arms and legs and mouth for both yourself and a multiply handicapped child.
Wow! It seems so weird to call Emma multiply handicapped because to me she is just my Emma and really isn't very complicated. She is my little buddy that joins me on all my adventures, rarely complains unless we are cooped up in the house for too long (or if someone is eating chocolate without sharing with her), makes friends wherever we go, and giggles often.
The last two weeks have reminded me of how different our everyday lives really are from those with typically developing children. The difference used to bother me but I've found myself less and less bothered by it over time. Our life is rich beyond measure and I think that is the reward of traveling this 'alternate' road in life. I never imagined that I would have come to this point of acceptance when we first started on our journey. I never thought I would be able to move past the hurt and find the blessing in this road. But it seems that is exactly what we have done and it makes me a Hopeful Parent now more than ever.
Kristina is the mother of two charming daughters, Julia (6) and Emma (4), and wife to a wonderful man who puts up will all her wild ideas. She started blogging to chronicle her family's journey that includes raising a child that has a profound hearing loss and cerebral palsy due to a congenital cytomegalovirus (CMV) exposure. Since learning of the CMV diagnosis she has worked to raise awareness on preventing CMV exposure during pregnancy. Kristina graduated from the national Partners in Policymaking program in September 2010 and is an advocate for disability rights and inclusion education. You can read more at howlifehappens.blogspot.com
Hello Hopeful Parents
So one day I was searching on-line and I found you guys. Then I read and cried some more. I was not alone. So I became a follower and gathered support, strength, and courage from your stories. I cheered you on. I thought about your posts. I laughed with you. I shared your triumphs and felt your pain and frustration. Now I have the privilege of getting to blog here. I am honored and excited.
I am a mom, wife, and teacher. We adopted our child from foster care. He was born meth addicted and has shaken baby syndrome. Every day is a miracle and a gift. I have gone from a weeping willow to a loud roaring lion. I show up, stand up, and speak out. My hope is that people will make the choice to adopt and not shy away from alphabet soup.
I am now on my second adoption journey. I blog so I don't loose my mind. You are welcome to join me on my journey or check in with me here monthly. I can't wait to see where this journey takes me.
Amy Fields is a wife, mother to an active five year old, teacher, and rabbit rescuer. You can visit her blog Many Kinds of Families at manykindsoffams.blogspot.com.
Wednesday, April 11, 2012
Acceptance. Awareness. Empowerment. Advertising?
My son got a dark blue shirt for his 4th birthday that declares in yellow letters: “AUTISM IS MY SUPER POWER!”
I hate this shirt.
Hate, hate, hate it.
But I’m struggling to articulate why.
It’s not because I hate my son.
I love him madly, endlessly, and for who he is.
It’s not because I hide his severe autism—quite the contrary in fact. I write articles about his progress, bore people with “Liam updates” at parties, and talk about autism all the time in everyday life.
Consider a recent grocery store outing. We were almost done checking out when I heard a grocery store clerk scold my son.
“Get that nasty thing out of your mouth,” she hissed at him as she bagged our groceries.
I looked over. Liam was spaced out and mouthing the germ-infested plastic buckle on the shopping cart. His nose ran and he added his snot to his spit on the radioactive seat fastener.
“Out of your mouth,” I commanded, ignoring everyone else in the store—the cashier, waiting for me to enter my pin number, the old woman behind me, the grocery bagger. My whole world shrunk to this battle of wills me between my son and I.
He looked at me (great eye contact!), blinked lazily like a bored amphibian, and then spit out the buckle with no melt down (thank you ABA training!).
“High five,” I commanded.
He flopped me a high five.
I traded him a Cinnamon Chex piece and became aware of my surroundings again.
“He has autism,” I muttered to the clerk, who had watched our whole exchange slightly agog. “You should see some of the things he’s mouthed in the last year.”
She commiserated with me that her kids still did the same thing, and we left it at that.
This was a pretty ordinary event, but I wonder how this would have gone if Liam had been wearing a shirt that bravely, boldly advertised his disability.
Would this shirt immediately have earned me—his long-suffering mother—a proper pity party? Would it have helped raise awareness just a bit more (“oh look, she’s grocery shopping with her autistic son, just like a normal person”)? Would it have shown my acceptance of my beloved preschooler?
I don’t know.
But I am not ready to advertise Liam’s disability, special needs status, or whatever you want to call it just yet.
Maybe this is because I still want to give him the chance of normalcy. A fleeting moment where whoever he approaches will think—before he starts stimming, or spinning, or making odd noises— that he’s just another curly-haired, green-eyed smiling kid.
Maybe this need to have other people see him as “just like other kids” has to do with my own issues. Maybe it’s about the fact that I’m still coming to terms with autism as a life-long thing, but I’m working on it. I mean you can’t really tell that Liam’s autistic just by looking at him—and this shirt would take out all the guesswork and immediately mark him as different—like the physical traits that characterize a child with Down Syndrome or Cerebral Palsy.
But is that such a bad thing since he is different? He’s non-verbal, has almost no attention span, has very little receptive language, and still has cripplingly erratic problem behavior?
Maybe I should be ok with letting the world know he is autistic by advertising it on this shirt.
As I think about this hated shirt more, it reminds me of other kids’ t-shirts.
I’ve seen t-shirts that playfully advertise and own up to all sorts of bad behavior—“ROCK AND ROLL ATTITUDE” or “GRANDMA’S SPOILED BRAT”—but these are somehow categorically different than this autism t-shirt. These whisper to the reader with a hearty co-conspirator wink: “Ain’t I just precious! Just a naughty little so-and-so!”
My son’s t-shirt rings of “cannot-be-helped”, “not-really-precious”, and “maybe-just-tragic”.
Or maybe not.
Maybe in a way, it’s a great big F*ck You! to all these other “too-cute” shirts. Maybe it’s saying: “So what!, This is me, I own my disability, but I’m not totally defined by it.”
Again, I don’t know.
I am all about acceptance, awareness, and empowerment, but my gut tells me not to send my kid to school in this shirt.
The person who bought it for him told me that she bought it because in the most literal sense of things: “we really don’t know what’s going on in his head and he could be a genius! “
I know, I know. He could be. But I can’t know because he can’t express much of anything right now beyond basic needs.
So, maybe I’ll hold off a while. Wait “until he recovers and then he can wear it” as one autism-mom friend of mine advised me.
Or maybe I just wait until he is aware enough to pick out his own clothes, to know that his birthday was yesterday, to play with his brother without prompting.
If (or when) we get to that point, he can wear whatever he damn well pleases and I’ll be the happiest, most non-conflicted mom around. I promise.
Tuesday, April 10, 2012
It is April, and that makes this Autism Awareness Month or Autism Acceptance Month (depending on which camp you fall into) and since my son Jacob is on the spectrum, I figured it would behoove me to write another one of my “big thoughts” posts about A.U.T.I.S.M here at Hopeful Parents.
Yeah. Not so much so. I’m too busy being his mother right now. Which is OK.
Instead you’re going to get one of my ruminating rambling stream of consciousness posts about where we are right now; a snapshot of this one moment in time with my one boy with autism (small letters). Which is OK too.
It’s Spring Break Week and ever since Wednesday noon last week, Jake has been mine, all mine. And right now? That means he wants my attention 24/7. Well, 14 at any rate.
Yes, Jake is one of those rare autistic kids who sleeps really well, usually about 10 or so hours a night, and grumpy if he doesn’t get at least 9. Yes, I really do know how lucky I am.
This was brought home to me today, in conversation with a dear friend who has a son on the spectrum too - quite different than Jacob, but also verbal and classified in the nebulous “mid-high” range of functioning (don’t get me started on how ridiculous the classification system is today, it’s another post for another time). But she was talking to me about her nephew, recently moved to NYC: a 6 year old boy very severely on the spectrum: non-verbal, violent, and a non-sleeper.
Yes the boy Does. Not. Sleep.
Maybe 2 or 3 hours a night. Maybe. On a good night. And her brother, his father, is in a severe state of PTSD as the sole caretaker of his son. And broke because he is unable to work due to same, now living in a homeless shelter. I was helping her brainstorm ideas and resources for them, and silently counting my blessings the whole while.
And then later I came upon a post by Sunday about a book filled with stories of non-verbal supposedly hopeless, “ineducable,” “low-functioning” kids on the spectrum, who, when given a chance to spell out words on a letter board or computer went on to communicate amazing things about themselves from their basic needs to their intelligent, rich inner lives and acute observations of the world around them.
It made me remember that just because a child is looking at the world though the corners of their eyes while spinning and screaming doesn’t necessarily mean they are not taking it in and thinking about it deeply.
Judge not. Assume not. Important credos when dealing with our amazing kids.
And then, later still we were at the upstairs neighbors on an after-dinner playdate – Ethan with one of the two boys, and Jake with their three year-old baby sister.
The situation with the upstairs folks is one of those wonderful, all too rare situations where we are completely accepted as a family and where Jake is known, welcomed and appreciated. (And I can’t even begin to articulate how much it means to us to have them in our lives.)
We ended up in a rousing game charades. Ethan and his friend were acting out TV shows and movies, all as incomprehensible fighting scenes that left the other mom and I in tears with laughter, but thoroughly baffled.
And Jacob, after observing a round or two, wanted to get on the action. He didn’t quite get the SILENT part of the whole thing – but that was understandable as the other boys were using plenty of sound effects (including ear piercing screams) clearly not quite getting the whole “silent” aspect of charades either.
What Jake DID get was... acting out his favorite movies and TV shows! And wow did he do a great job at that (see, scripting DOES come in handy sometimes).
At one moment when Jacob was jumping up and down yelling “My turn!” after the other boys had rolled on the floor wrestling and shooting at each other in an attempt to convey “The Hulk” (really?), my friend turned to me and pointed out how much Jake just wants to be a part of everything that is going on. And she reminded me how much, in this, he has changed in the last few years.
Because I live with him day to day, there is so much I take for granted as he evolves, as his talents emerge. His tremendous enthusiasm and desire for engagement is a gift, a strength. It’s what keeps his teachers falling in love with him, leaving them in tears when their year with him is up.
It’s one of the many things that make him such a joy to parent.
Just a few years ago, I could not have imagined him “getting it” enough to participate in a (noisy) game of charades. But here was Jake, asking for ”my turn” and transforming into Ironman before our eyes, shooting jets of light from the palms of his hands. Right into my heart.
Always, right into my heart.
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.
Four months ago, we moved to a new school district. The day that Graham started school, I got a call from his new teacher. She told me Graham didn’t belong in a self-contained class all day, which was his placement in our last school district.
While excited, I was nervous. My son couldn’t hold a conversation more than a few exchanges. How would he make friends? He doesn’t understand many social norms. Would the kids in the general education class make fun of him? Would his teachers understand? I grabbed his communication folder every day as soon as we got home expecting a note saying ‘This isn’t working, he can’t handle it.’ Instead, I kept getting notes saying, “Graham had a great day!” with things like “Participated independently” and “Completed work independently” checked off.
Then came the IEP meeting. Again, I expected to hear he wasn’t doing well. That he was an outcast. Again, I was surprised. His peers like him. They take care of him at lunch, encouraging him to eat his food and walking him through the line to get his chocolate milk. He got a Christmas and Valentine candy-gram from other students. His teachers reported that he had friends. He was bringing home completed school work from class that was correct.
One day it hit me: my son was doing what I thought he couldn’t. He was hacking it academically. He had friends. His teachers valued him, and knew how smart he was.
In short: I had completely underestimated him.
Last week, Graham had a doctor’s appointment. I told the nurse there was no way she would be able to get his blood pressure - he is absolutely terrified of the device. I did, however, want to see how far he would go. He surprised us both when he sat down quietly, held out his arm and let her get his blood pressure. No whining, no fear.
Then his doctor prescribed a medication only available in pill form. I had tried with disastrous results about six months ago to get him to take a pill. Even mentioning it made him upset. Still surprised from the blood pressure event, I asked him if he would take a pill. He said yes. That night, he did.
It’s a learning process for me. Throughout our journey with autism, I have been my son’s voice. I have stepped in to protect him more times than I can count, ensuring he wasn’t sent into a fearful frenzy. I have been so afraid of him failing that sometimes I’ve been afraid to let him try. But I’m discovering I’m over-protecting him, and need to let him lead the way now. He wants the chance to succeed or fail - he just wants to try. After how hard he’s worked to get where he is, I don’t want to be what holds him back.
So I’ll keep reminding myself to let go a little. To let him tell me when it’s too much. And when he can’t handle it, I’ll still be right behind him ready to step in and help.
In case you need some help, here's a place to start: Sally is a parent and advocate for her child with special needs. She blogs at sallysblog.com. When she's not posting here, you can find Katie at her blog, Okay, Who Turned Out the Lights.
Monday, April 9, 2012
Seven lessons for year eight
In our school district, 6th grade is gloriously still in elementary school, so next year we make the move to the frightening world of junior high. This year's IEP is complicated by the fact that not only are we writing a document that needs to be upheld by an entirely new team at an entirely new school in an entirely new environment, but we are moving this summer to a new county and a new school district. We don't know yet where he'll be going to school. He's mostly mainstreamed now, which has not always been the case. He'll be heading into the cruel world of middle school with some academic accommodations and a general need for someone to check in with... Other than that, he's actually ready for middle school. This is scary. He will have a locker and will be trusted to move from class to class during bustling passing periods. I know he can do these things, but I am so worried for him. The process of choosing a school is consuming me. I may write about that next month, we'll have to see.
Today, however, as a meditation for myself as much as anything, I want to go through the past seven IEP's, and the biggest lessons I learned from each. This is an attempt to integrate and build my confidence: I know what I'm doing here, but every year there seems to be a new challenge and a new problem and a new set of circumstances that shocks you in to a new reality.
Year one, lesson one: Preschool
Just because a school district determines that your child doesn't qualify for a specific service, it doesn't mean that you shouldn't look into pursuing that service outside of the school district.
This is one of my major regrets. With hindsight, my son was the very definition of sensory integration issues in preschool. He orbited the classroom, unable to stay still for circle time. He hid under desks during loud activities. His fight or flight instincts leaned aggressively towards flight whenever things got overwhelming. He was tested for sensory issues in that first IEP, and was deemed to not have significant-enough issues to qualify for school-based services.
I know now that this was bull. The questionnaire for sensory issues breaks them down into several categories, and I was told that he didn't qualify because he didn't score badly enough in all of the categories. He did score on the extreme end in three of the five, but the school team told me this was not enough to qualify him for services. This may have actually been true, this may have been their criteria for pre-school intervention. When I heard this, I heard, falsely, "This is not the problem, then." I crossed it off of my mental list. What I should have heard was, "You child is scoring with a definite difference in a number of categories on this questionnaire." He had sensory issues. He HAS sensory issues. I don't know if our experience is normal, but he's never really received adequate interventions in the schools for sensory issues. My desire to disqualify diagnoses (and I very competently kept my head in the sand, buried deep in denial for another year or so) kept us from seeking the help of an occupational therapist for the next three years. Once there, the work they were able to do CHANGED his life and mine forever. He most definitely needed OT, and private OT at that, OT in a gym with someone who could work with him one on one. The school would never be able to provide that. I wish I'd realized then how much work we'd have to do outside of what the school could provide.
Year two, lesson two: Kindergarten
These people are not your friends.
My parents were both teachers. I grew up with them talking shop at the dinner table, about difficult parents, about newly imposed rules and standards, about the long hours on their feet with bathroom breaks few and far between, about how hard it was to create environments of learning when parents didn't support their efforts. I wanted so badly to let the teachers know that I supported them, and I still do at every opportunity. Teachers have a tough job, one that I know I could not do myself. I really wanted them to like me, and I wanted them to know I knew their plight. I was overly accommodating in that first year. The Kindergarten IEP was absolutely toothless. They got away with a lot of, "I don't have time to communicate with you, you'll just have to live with that." I did it because I wanted them to understand that I understood. Silly me. My son left kindergarten having spent very little of the school year doing much in the realms of academics, but more importantly, he didn't learn how to go to school. The path of least resistance got us through Kindergarten, but it did not yield anything in lasting strategies or helpful behavioral interventions. This set him up for a complete faceplant in first grade. This brings us to...
Year three, lesson three: First Grade
An ounce of prevention beats a pound of cure, especially when that pound of cure involves hospitalization and IEP violations and antipsychotic drugs.
This is the only kind of lesson that can be learned with hindsight, and years of distance. My son's sensory issues and social skills, left untreated, led to the worst years of our lives. First grade brought a new diagnosis: bipolar disorder. We had largely extinguished the "flight" response from my son's repertoire, but his sensory issues and anxiety didn't extinguish his adrenal response to over-stimulation. As a result, instead of "flight," we got "fight." He began to act out and hurt himself. He was, in the words of his first grade teacher, ineducable. With the diagnosis of bipolar disorder came the assumption that medication would be the only thing that worked. We began a process of changing and adjusting these antipsychotics that led us into a tailspin of behaviors, weight gain and general hell. I am ultimately responsible for letting these things happen. I gave my son the medications, I listened to doctors that told me things I wasn't sure were true. The medications and the rapidity of changes to these medications led to a complete disintegration of our lives. My son was hospitalized for ten days that year, moved schools four times, including attending a hospital-based school for an unprecedented (in that the insurance company paid for it) 4 month stay. I used to be very bitter at the school for the events of that first grade year, but now I look at it and wonder why no one, including me, hadn't seen the writing on the wall for the previous two and done more to prevent it. My regret lies in not acting soon enough. My inaction led to my son become a drugged, ferile child.
Year four, lesson four: Second grade
Stop the insanity!
If first grade was our worst year, second grade was the hardest. My son was saddled with a lifelong mental disorder that prior to his diagnosis I didn't know children could have... Conveniently, the psychiatrists that were touting pediatric bipolar swore that it was the same as the adult version, even though the diagnostic criteria didn't match up. Basically, children who were aggressive and irritable were given the diagnosis without having to meet the criteria of periods of mania followed by periods of depression. My son never had periods of either, truly. Again, hindsight is 20/20. But in his second grade year, as he was taught in a self-contained school for children with severe behavioral issues, it became very clear to me that the medicines that were supposed to be helping him were actually harming him. He gained 50 pounds in a year. 50. He was only 6 and he weighed 110 pounds. Before the meds he was a little bean pole. A blood profile I insisted his psychiatrist order showed high cholesterol and the beginnings of diabetes.
The more I researched the side effects of the medications he took, the more I realized that his behaviors, too, could be caused by the medications as much as by the disorder I increasingly suspected he didn't have. I decided to pull the reins back and take him off the medications. This took more than a year, and I had virtually no support from professionals in this decision. The school was furious with me, as each down-titration of the medications cause a surge in bad behavior. The doctor did as I asked, prescribing lower and lower doses but warned me about the dangers of unmedicated bipolar disorder. My family and friends were the only people who saw what I saw: my beautiful son, blunted by drugs, flailing in the wrong environment, struggling. They alone supported me, and that was enough. I knew I was doing the right thing. I knew I was right. I fought hard that year, and I held my ground.
Year five, lesson five: Third grade
Hard work pays off.
By the end of third grade, my son was off of antipsychotics and had been reevaluated and found to have not bipolar disorder but alphabet soup: ADHD, PDD-NOS (which turned into Asperger Syndrome shortly thereafter). With the autism diagnosis, came explanations for the difficulties that my son had had since birth; the sensory sensitivities, the inability to understand social cues to sit or to talk at the right times. My fight with the self-contained school remained hard fought until I finally got all parties to agree he needed to be moved to a neighborhood school with behavioral support, and he was able to attend and learn and stay safe. He was still challenged in significant ways but we were finally on the right track.
Year six, lesson six: Fourth grade
Sometimes the wind's at your back.
The most amazing thing happened in fourth grade. My son had a great team, had appropriate interventions and support. Guess what? His progress during fourth grade was amazing. He still had his good days and bad days, but the understanding between the team is that we'd all work together to help him succeed. This was also the year that he started private social skills group. Between the private therapy and the public school, the future looked bright. I finally got to experience what happened when an IEP team worked as a team. It was glorious. Enjoy this, if you are currently experiencing this. If you are not, know that this can happen.
Year seven, lesson seven: Fifth grade
Just because they have a disability doesn't mean you shouldn't challenge them.
My son left fourth grade spending less than a quarter of his time in general ed classrooms. With middle school looming, and what I am sure was a difficult schedule for the special ed staff to logistically work out, I was informed at the beginning of fifth grade that he would be (quite suddenly, I thought) fully mainstreamed (with push in support). I was appalled. They were setting him up to fail! It hadn't been too long ago that he was regularly throwing chairs at his teachers, and they were just going to throw him in to the lions den? The trust that we'd built in the awesome fourth grade was not lost on me though, and I didn't feel like this was the hill to die on before they got to test their hypothesis that he'd be "just fine" in gen ed fifth grade. I was sure they'd back track upon his first tantrum... But that tantrum never came. The year wasn't without challenges, and he still definitely needed a lot of support, but he left fifth grade spending all day in gen ed, with pull out time with therapists. This was not a move I would have done on my own. Somehow the team knew it was the right time to push him just hard enough, and I let them.
Our narrative has gotten sunnier and sunnier as time has gone on. My son constantly amazes me with what he can accomplish, especially when properly supported. I've been burned and I've been pleasantly surprised by schools during this process. I have learned tons. I know my rights, I know more about psychiatric drugs than I ever thought I would.
Sixth grade was no picnic. Our awesome team further devolved and my son's teacher might have been the second coming of the Wicked Witch of the West. He perseveres, however. He's doing really well. I have no idea what to expect as we move in to middle school. I can only take stock of where we've been, what he needs, and what it takes to continue helping him succeed. If this post teaches me anything, it's that I have hard time seeing the forest for the trees until I get them behind me. So, who knows what the me of three years from now will say about the me today.
I get the feeling that we're on the cusp of a period that is going to require more effort from him for success. He's a great kid. He can do it... What these seven lessons teach me though, is that while we aren't out of the woods, he is resilient, I believe in him, and progress can be made in even the darkest times.