Sunday, April 1, 2007

Discrimination

My Son Has Autism Too!
By Ashley Morgan (written Mar'04)
Autism Aspergers Digest Magazine May/June 2005


My son, Leo, is expected to recover from Autism. What does this mean? According to professionals, he will be indistinguishable from his peers and grow up without his disability impairing him from a typical life. Will he always be different? Yes. Will social skills be a strength? Probably not. But, he’ll have choices and the ability to choose from them. He can choose to invest in friendships or connect with people around him, or not. He can play Power Rangers with a friend or spend hours alone playing computer games.

My husband and I thank God everyday for his progress and his ability to learn. We count our blessings, for they are many: that I can be a stay-at-home mom, that we found good professionals early on and that we have a solid team that addresses Leo’s deficits. At 5 1/2, Leo is expected to go to kindergarten this fall with no shadow, essentially done with services.

As much as I could go on and on about how wonderful Leo is and the progress he has made through the years, this is not another one of those ‘hoorah’ stories. I’m not here to be a cheerleader, or an inspiration. I am writing this to demonstrate how my life as a parent with a child on the spectrum is really no different than yours. Having a child on the spectrum is having a child on the spectrum. Each family is dealt their cards. We all battle the myth that Autism comes in only one brand, a hopeless and untreatable stereotype. I’m here to dispel another myth: that having a high-functioning child, or even a child who’s a
candidate for recovery is easier. I want to give parents like myself, of children who are high-functioning, a voice finally.

My story of how Autism has affected me is no different than any other Autism mom: the pain, the sleepless nights, the exhaustion. However, our story has one difference –Leo is high-functioning. His diagnosis of PDD-NOS and the mildness of his disability was a blessing. But it has also been a drawback as well, both with professionals in our lives and with other parents of kids on the spectrum. Precisely because Leo is high-functioning, I am discriminated against by others. ‘Discrimination’ is a strong word to use – I know. Yet, Webster’s definition, “to make a distinction on the basis of a prejudice” is exactly what it
feels like to myself and other moms whose child is mildly affected by Autism. The very last place I thought I’d find myself fighting discrimination is with my own kind. Yet, here I am.

Do I think it’s intentional? No. Do I think people know when they’re doing it? Sometimes. Do I get any support from my peers? Yes and no. I do get support regarding the overall struggle, issues we all share with our school district, the toll Autism can take on a marriage, siblings, etc. But when it comes to sharing the ups and downs about Leo and his everyday life, my words fall on deaf ears.

No one asks about how my son is doing. They don’t want to hear my problems, because no one sees them as ‘real problems.’ Dare I discuss that Leo is having a bad week, initiating only 1 or 2 exchanges at preschool versus his more regular 4 or 5? Or that I am frustrated by his constant insistence that I watch him play his Gameboy, and that his lessons on perspective taking are not yet taking hold? Dare I risk another cold shoulder or again watch that ever-so-slight turn-away when I express my opinion that Autism isn’t hopeless, that while it makes our kids different it is also part of what makes them unique and wonderful? Dare I ask for advice? Not any more. I have learned to remain silent at meetings; I just listen.

Perhaps part of it reflects the old adage, ‘out of site out of mind’. I am the last person people call to tell me something important about my district (like someone getting fired or a change in a program). My calls go unanswered when I ask parents to attend an IEP meeting and support me. My advocate? My attorney? It takes them double the time to call me back, and we’re last in line to get a meeting date. There’s this perception (mostly unspoken) that our needs are not pressing because Leo is already high-functioning, that he is more than not ‘just fine’, and that other parents’ problems are ‘more important’ than
are ours. On occasion this might be true, but generally it’s a fallacy that I have to live with day after day after day.

So what is it like to have a child in regular ed? A piece of cake? Think again. A significant part of my daily challenge is to explain the issues Leo faces, our goals, and how to address them. We are working with the outside world, the world that doesn’t ‘get’ Autism. Instead of dropping our child off in the safe haven of special ed where he and I are understood, we must invent our ‘individual school’ within a regular classroom. This requires constant involvement. We must introduce Autism, shadows, and other 'disruptions’ to this outside world. It’s not easy.

Educators ignore my panic over Leo’s issues not getting addressed. Because these kids ‘look good’, their need for services that will lay the groundwork for future learning goes unattended to. Sure, our kids can learn to laugh when the other kids laugh, without a clue as to why they are laughing. Sure, when our kids are little, it’s cute when they take things
so literally. Looking good can get them by for only so long, and it’s no longer cute when they are in middle school. Professionals view 3rd grade as a marker, where kids often‘break down, no longer able to fake it and get by without the services they need. Its when social demands and academic demands – especially those that involve abstract thinking -
make them stand out as different than their peers. By then, the damage is already done: the child’s self esteem and confidencecompromised as they try to become who they were meant to be. It’s sad that many educators would rather wait for a disaster than prevent one, that they ignore the fact (despite our many utterances!) that we can invest time and attention now or have to invest so much more later. Often, the more significant the issue, the easier it is to understand and see. It’s many of the high-functioning kids who really lose out on services.

Honestly, Leo and I live in two worlds, the ‘regular’ ed world and the special ed world. We lead a double life. At two, I was thrilled that Leo could tolerate daycare. However, I found that well-meaning caregivers treated my son differently, in a way that made things worse for him. They didn’t demand that he finish his coloring like all the other kids; he has Autism. They didn’t stop him from running around like crazy during circle time; he has Autism. This is the opposite thing to do for any child, even more so for a child who needs structure and prompting. They spoke louder and more deliberately to him, as if he were
hearing disabled, which he is not. They permitted him to sit alone in the playground, picking up handfuls of sand and watching it slowly fall out of his hands. They allowed him to lie on the ground for hours, rolling a matchbox car over his stomach while the rest of the kids played blocks together. I was constantly explaining, coaching them on how to not treat him differently.

I spent immeasurable time and energy integrating Leo’s shadows into his preschool, educating them on this disability, getting them to be open to this unique arrangement in this small, quiet preschool in the owner’s colonial home.

Parents and kids think his school shadow is another teacher. In no way is it obvious that the shadow is there for Leo. She never hovers, she works with all the kids, perhaps covering the fine motor center, casually keeping her eye on her guy. She will prompt, explain, or quickly intervene in some way when needed. Fortunately, Leo is not singled out, as happens in most typical ABA programs at this stage in the game.

One day as I’m standing in the parking lot, I saw Leo’s shadow walk by, but I don’t say hi: A typical mom is coming toward me to have a chat. I decline her invitation to a Tupperware party. I say I can’t find a babysitter, but in reality I have a meeting with my attorney.

I attend a lunch for all the preschool moms. I talk about the amazing layout of food, envious that they have the time to put on such a display. I think about how I am not missing that frozen burrito that would have been my lunch. The women talk about the various elementary schools and their class sizes. I listen in, hoping to learn something from the moms with older siblings.

The conversation turns to paras. One mom says there is at least one para in each class. Another says there isn’t any for her child’s oversize class. The hostess emotionally tells us that her older daughter’s class has three! She can’t believe that the designated kids each need their own para. “I understand that parents want to mainstream, but honestly, it’s a mistake for them to be in the class anyway. When I volunteered the other day, they looked anxious and frustrated,” she says. I had to hide my beet red face. After I composed myself, I calmly reentered the conversation, but said nothing. I’ll see five of these parents at Leo’s school next year.

Leo has regular play dates with typical peers each week. Fresh from a horrendous IEP meeting, I have to table my emotions, put on a relaxed face, and act as if I had a normal day of errands as I sit down with the other parent. I talk about redecorating, about my family, about how we need to trade in our lease on our car. In my mind I am thinking about how we are going to get by until the next paycheck. Leo’s anonymity is too important, I don’t dare say anything, even to the most sympathetic adult. Picture this: “Hey honey, you know what Leo’s mom told me today? That Leo used to have Autism, incredible isn’t it?” while Leo’s playmate overhears from the other room. The next day the playmate asks Leo what Autism is.

Last week a mom in our Autism support group asked me what we planned to do for Leo’s services next year. I avoided making eye contact, and almost hesitantly mentioned that he will be done with ABA and will go to school next fall without those supports. There was a shift in the air between us. She said “Oh”, and forced out a polite smile, nothing more. I quickly added that he’ll still need speech and OT. I cross my fingers that she’ll return my calls this summer. We have little girls the same age that go to a class together and like each other very much.

Last month I found myself again being chastised by one of the ‘old school moms’ as I counseled a ‘newbie’ – a mom of a newly diagnosed toddler. Moms with older children, even as young as 10 years old, missed the incredible opportunities that the ‘90’s research and technology have brought our kids. Many of their kids didn’t receive the quality or intensity of services that my child has been blessed with, just by being born later. They preach acceptance of a child, even of his or her limitations. “There is no cure,” they say. “There is no recovery.” They preach only what they know, not willing to look further at what might be very painful to see – that for some, dramatic progress is possible, recovery is possible, but maybe not for their child. Someeven have the audacity to tell me to my face that my child never had Autism because he is now functioning so well. They say, “Well, PDD-NOS….he never had any real issues.” They challenge my child’s diagnosis out of pure stubbornness, not wanting to feel wrong. They hang on to their doctors, their therapists, their theories for dear life, having no idea the damage they do by coaching a new mom with dated, incomplete or biased information. Or the wounds they inflict on those of us who are trying just as hard as they did to create better futures for their child, just doing it in a different manner. They foster division within our own community instead of embracing all paths parents might choose as viable options to help our kids.

Whether a child is high-functioning, low-functioning, is verbal or nonverbal, stims or not, all children deserve the services they need to maximize their potential. And, they deserve parents who are supportive and engaged with their child and their community, a community that rejoices in the successes of everyone, not just those who members deem ‘worthy.’ Leo may be working on perspective taking while other kids may be working on basic greetings. Yes, many moms would kill to have my problems, but problems they still are. It takes the same amount of time, energy, and strength on my part and Leo’s to get
through each week as it does for other families whose kids have ASD. Leo’s 35 hour-per-week program consists of ABA, PT, OT, and SLP, and I drive him to three different locations each day for those services. He misses out on play dates or day trips like going to a museum because of therapy. My family can’t go on vacations longer than a weekend, missing out on seeing family, because he can’t go long without his program. My son can’t eat snacks or birthday cake at friends’ homes like everyone else because of his “crazy diet”. As a bonus, we have the occasional doctor and nutritionist appointments, Tae Kwon Do and swim lessons on weekends, all with a goal in mind – equipping him with the skills he needs to function in the world around him. We are drained financially and emotionally, just like other parents.

I am not walking around saying that what I did is a ‘model’ for other parents to follow. Quite the contrary. There is a special blend of therapy for each individual child. There is no one-size-fits-all therapy, just like there are no two children alike on the spectrum. However, I have learned a few things that I choose to impart to other parents: Don’t give up on striving for the maximum level of services for your child; NEVER give up on their potential - they’ll always surprise you. Reach for the stars, start at the top and work down, not the opposite or you’ll settle for less than your child deserves. Go with what works; be
constantly open to new ideas. Leave no stone unturned. Revisit ideas abandoned earlier as they may make sense now. Not everything comes with an explanation or can be backed up by scientific research. Who wants to wait 30 years? KNOW there are many recovered kids out there, hidden ever so carefully, peppered within your schools, your town. They can’t be the Autism poster child because it would end up hurting them, rather than helping them because of the ever-prevalent negative ideas still held about Autism.

And, please realize that we moms with high-functioning kids feel just as frightened, alone and vulnerable as do the rest of you moms out there. We often witness from the sidelines the compassion, acceptance and support you give to other moms, and we long for it, too. We want to belong to a group where we can share our experiences – whatever form they take – and be listened to and appreciated, too. We are often lonely and need that quick understanding glance and smile from a comrade, and yes, even validation that our choices are good ones, our reasoning appropriate for our child. Because our child is doing well doesn’t mean our fears and concerns are less prevalent than are yours.

While our kids may function on different parts of the Autism spectrum, what unites us all is the love we feel for them, and the deepest desire in every parent that their child can enter adulthood equipped with skills to succeed in life. For those of us parents whose child may be progressing at a quicker pace, and especially for those of us whose child has recovered, the journey may seem easier to the outsider – even an ‘outsider’ within the Autism community – but it’s not. Let that be an understanding that unites us, not divides us. We all need to be supported.

BIO
Ashley Morgan describers herself as a child advocate and parent mentor. She is a full-
time mom of two children, and enjoys organic vegetable gardening and Ashtanga Yoga.
The Morgan family lives in New England, along with two ponies, six cats and two dogs.
Contact her at ashley@hiddenrecovery.com