September 16, 2012

Falling into Place

Posted in Life's Little Moments, My Take on Autism tagged , , , , at 2:27 pm by autismmommytherapist

I walk down the hallway with a hundred other parents who are here for Back to School Night, noting the brightly colored tiles of tiny handprints from students of years past. Grinning teachers greet parents at every door, and I remind myself to pay attention so I don’t get lost (as I often do). I’m actually one of the first to find Zach’s classroom, and am warmly welcomed by his teacher, special education teacher (my son has mild autism and ADHD) and an intern lucky enough to be placed with this class for the fall. I quickly locate my son’s seat and squeeze myself into his tiny chair, wondering how anyone can seem both so big and so small at the same time. I look around as the other parents begin to file in, and smile at the mom next to me whose son shares a table with mine. I have to admit, I’m thrilled to be here.

This is Zach’s mainstream kindergarten class, and so far, he’s thriving.

It was a difficult deciding what program to place him in this fall, but with the support of his excellent pre-school teacher and his equally wonderful child study team, we came to the consensus that Zach should try mainstreaming in the morning portion of his school day on day one. We discussed easing him into it at first, but I felt strongly he should have the whole experience at the get-go, and see if he could handle it. He had some experience in a “typical” classroom a few times a week in pre-school, and he’d done pretty well there, despite his impulsivity. My gut told me however that if Zach were going to “buy into” a larger classroom experience, that he needed to be part of the community from day one.

As with everything with Zach (and almost every other child on the planet) I also knew if he loved it there, he’d do what he needed to do to stay.

I look down at the colorful folder Zach’s produced for the evening, the one with a familiar T-Rex grinning at me from orange construction paper, teeth bared in a menacing pose. I think about how proud I am of him, how he’s worked so hard to acclimate to a different experience, how much he’s matured in a matter of six months. I contemplate how I’m equally proud of my older child with severe autism, my son whose teacher writes reports weekly about how hard he’s working in his private school for autism, how his smiles and enthusiasm for most activities light up the place. There was a time when I desperately wanted a mainstream experience for Justin as well, but in the end, the almost individualized instruction coupled with a staff well-versed in all things autism turned out to be the best placement for him. The fact that we’ve made this match, and it’s working out so beautifully, renders me eternally grateful.

As I turn my attention back to the special education teacher who is lucky enough to be spending her first year with this group of children, I think about why I want this to work so much for my youngest. It’s not the allure of “normal” (whatever that is) kindergarten, for I’ve long ago accepted there really is no “typical” child, or adult for that matter. It’s more that Zach seems to walk at times between two worlds, that of children with special needs, and the one in which most of us inhabit. For my son there will simply be more options available to him in the latter, particularly as he grows older. He’s so eager and curious to try new things, new experiences. I want him to have access to a full “life buffet”.

A food analogy always seem to work for me as well.

Fairly quickly Zach’s teachers wrap up their session as the PM kindergarten parents wait patiently at the door, and I gather my papers together and get ready to move on to Zach’s self-contained classroom. All three of his teachers assure me how well my boy is doing, how much they enjoy having him in their classroom. I assure them the feeling is mutual, and thank them for their efforts. They are clearly caring and enthusiastic professionals, as are the women who care for Zach in the second part of his day. Once again, my family has seemed to hit the jackpot for teachers and aides. Both of my boys have the resources and educators they need to be successful. The rest is up to them.

And thankfully, I believe both of them will soar.

September 5, 2012

Kindergarten Rules

Posted in Life's Little Moments tagged , , , , , , at 10:24 am by autismmommytherapist

I lurch to the left as I try to reestablish my balance, almost bowled over by my youngest son as he wraps his body around my lower torso. Zach and I are on line to gain entrance to his new school for orientation day, and although we visited both of his teachers and their classrooms in the spring, I can tell he’s experiencing a high level of anxiety at the moment. I reach down and gently peel him off of me while grabbing his hand to comfort him, and tell him in a few minutes we’ll be inside. I remind him he’s already met his teachers and most of the other children haven’t, and he smiles at this opportunity to be “first”, which is always so important to him. His death grip on me relaxes a bit, and I see a small smile flash across his face at this knowledge, and know I said the right thing.

My last child will be attending kindergarten tomorrow.

A few minutes later we are allowed inside, and we promptly cycle through the day’s activities. We begin our adventure in the classroom where he’ll hopefully be mainstreaming first thing every morning, and I can tell he’s completely overwhelmed by the experience from his absolute silence. He’ll be with nineteen other kids (which is a huge class size for him), one regular education teacher, and one special educator. Both teachers are exceedingly warm and welcoming to him, and after a brief spiel about his upcoming year we are dismissed to the general assembly. I look down at Zach in his small chair which I know he will soon outgrow. I see my son being uncharacteristically still, taking everything in very seriously, with occasional glances across the room at the one child he knows from pre-school.

In both the regular ed class and the self-contained he has a friend, and she’s wonderful. For that, this mother is eternally grateful.

Eventually we make it through the almost hour-long assembly throughout which Zach paid vigilant attention, and we conclude our visit by dropping by his self-contained classroom, where he will go every day after his mainstream experience. Once again, his teacher and aide put him at ease and engage him immediately, and soon he is immersed in an art project, glancing now and then at the students around him, then returning to the task at hand. Throughout the morning he plays nicely with the other students, and cleans up when asked without protest (!). Each time I prompt him to say thank-you to one of his excellent educators he does so willingly, and grants them one of his rare bear hugs which his mother so covets.

He’s nervous, and a bit shy around the other kids. But I can tell he’s excited too, and with Zach, that’s more than half the battle.

I give both teachers a small “dossier” on Zach, things I think will help him acclimate, details I would have wanted to know about a student when I was a teacher. It’s still strange for me sometimes to be on the parent side of the table, but this position also comes with invaluable insight, and I remain grateful for my educational experiences as they’ve helped me to be a better parent.

Most of the information I’ve shared is practical. Zach is on a special diet. His impulsivity and ability to contain his emotional responses to situations will be his biggest challenges. I also try to convey in words how loving he is, how his first instincts in any social situation are to befriend someone, and to help whenever he can. These facts are just the bare bones of what makes my boy special.

I know I could never completely explain how brave he is, how his willingness to try new experiences this summer, mostly without incident, have amazed me. He soared at his new camp, so much so that the instructors have given me the green light to try sending him next year without a shadow. He conquered his fear of the ocean this summer with his boogie board, braving bigger and bigger waves as the season waned. He even briefly tried a vegetable, which did not lead to a repeat experience, but there’s hope.

Truly, there’s just so much hope.

Eventually the day concludes, and I lead my small-but-growing-up son back out to the parking lot, his hand clasped firmly in mine. He tries to remove it but I insist as cars start to pass us by, and he relents. I know this is only the beginning of the many “pulling-aways” we’ll experience, and I’m grateful for the moments we still have, for the fact he told me the night before that he was scared, that he can articulate his feelings with me. He seems at once so old and so young to me, and I am certain I will experience this feeling many times in the years to come. At this moment I’ve never been more proud of him.

My last child is going to kindergarten.

October 14, 2011

Parenthood Review

Posted in Fun Stuff tagged , , , , , , , , , at 9:02 am by autismmommytherapist

Yes, it’s time for that semi-annual review of Parenthood again. NBC is shaking in their shoes.

I’d like to state for the record that it’s pretty much a miracle I’ve stayed with this show, and it has nothing to do with its quality, or its accuracy in representing the trials and successes of a family raising a child on the autism spectrum. Frankly, I think the writers, actors, and director are doing a phenomenal job, and it’s only a miracle I continue to watch it because I am such a wimp when it comes to television with autism as one of the primary subjects. Honestly, it’s just that at a certain point in my day I prefer to put a moratorium on “all things autism” if possible, specifically while enjoying my approximately eighty-seven minutes of downtime before slumber comes to claim me. Hell, it took me a week to watch Claire Danes portray Temple Grandin, and she was wonderful. I never saw Autism the Musical, which I know is my loss. I only watch A Night of Too Many Stars every year because we merit the comedic A-listers now.

At times I am a bad, bad, autism mommy.

In my defense, part of my lack of desire in viewing programs about autism right before bedtime is that they get my brain going in a thousand different directions, which for me is generally not conducive to sleep. Fortunately, Parenthood has never robbed me of slumber, and has only stimulated my mind in positive ways. It has in fact been the catalyst for several conversations about autism with acquaintances, all of which I believe have been informative in some fashion for everyone involved.

I think Parenthood has served as that catalyst once again with one of their recent episodes, where Max, (played by actor Max Burkholder) is placed in the same private school as his cousins, one with a predominantly neurotypical student body. His parents, Christina (Monica Potter) and Adam (yummy Peter Krause), wanted their son to be educated in an environment where he would be more academically challenged, and made the decision to transfer him from a school specifically designed to serve the autism population. It was a daunting decision for them, and remains a profoundly tough choice for many parents outside the world of television. You can see the weight of it clearly on Christina’s face the day she and Adam drop Max off for the first time.

In other words, his mother was scared to death.

I have to admit, the Parenthood crew did such a great job portraying Max’s subsequent immersion in “neurotypical world” that it was gut-wrenching to watch, which means they got it right. In particular, there was a scene in the classroom where Max repeatedly blurts out answers and chastises his neighbor, all while his classmates are simultaneously rolling their eyes and regarding him with utter contempt. Watching Max meet rejection at lunchtime when employing all the social tools he’s been instructed to use (offer to shake hands, look people in the eyes, and smile), was also upsetting. What was more upsetting however was seeing his utter frustration at the children’s reactions, when technically he knows he’s used all the right social cues. Only the most heartless of viewers would not be moved as he makes his way to another table, and sits down alone. I admit, I felt palpable relief when in a later scene his cousin, with friends in tow, seeks him out for companionship and advice.

But the scene that really got me was the one with Christina and the teacher.

It’s always interesting for me to view scenes such as this, because I taught for a dozen years and I’m a parent of two special-needs children, so I’ve made myself comfortable on both sides of the “table”. I could literally feel Christina’s frustration that she’d had absolutely no reports on Max’s first week of school, despite multiple, and increasingly desperate, emails sent to his teacher. Truly, I wanted to give her a hug.

At the same time, I remembered how even with the best-laid plans, the first week of school can often resemble a circus, and that’s on a good day. Sometimes it can take a week or longer to take stock of a child, see his strengths and weaknesses, get a sense of how he’ll interact with his peers. Max’s teacher seems competent, and I believe she was doing just that, trying to get to know him before contacting his parents. I also believe she should have responded to at least one of those emails. Everyone has enough time for “he’s doing okay, we’ll talk”.

Yup. Everyone.

I anticipate I’ll be mirroring Christina’s experiences with my youngest someday, hoping he’ll get a handle on his sometime-impulsivity, keeping fingers crossed and double-crossed he’ll continue to make friends easily as he seems able to do now. Zach has a long road ahead of him, and it’s lovely to see his potential future journey described so well on the small screen. Parenthood is doing a stellar job in raising autism awareness, which will hopefully continue to spill over to educators, neighbors, and that person at the watercooler who has no connection to autism (if he or she still exists). I’m hoping that this awareness, and ultimately its preferred bi-product, compassion, will extend itself to my little one some day.

And in the meantime, Parenthood, I remain hooked.

September 20, 2011

Gratitude Attitude

Posted in Uncategorized tagged , , , , , , , , , at 10:17 am by autismmommytherapist

Today’s Gratitude Attitude is dedicated to my local SEPTA (Special Education PTA). I’ve been attending for years, and have never witnessed such a large crowd as at last night’s meeting. Our first get-together not only included parents, but also teachers, administrators, aides, and principals as well. It truly requires an entire continent to raise our kids, and I’d just like to say how appreciative I am that so many different factions were in the house last night. I’d also like to extend my gratitude for all the hard work the SEPTA board does for our families. Thank you for your time and contributions!

June 21, 2011

Gratitude Attitude

Posted in Uncategorized tagged , , , , , at 6:26 am by autismmommytherapist

This week’s Gratitude Attitude goes out to both of my sons’ teachers, their therapists, and their aides. Justin and Zach have made tremendous progress this year, and it is in large part due to the collective efforts of the men and women who worked so hard with them at their respective schools. I couldn’t be more thrilled that they will be with the same teachers next year. I wish everybody a wonderful and restful summer!

 

 

September 2, 2010

Guest Blogger Thursday

Posted in Uncategorized tagged , , , at 6:28 am by autismmommytherapist

Through my Thursday posts I’d like to provide a more widespread forum for parents, family members, and practitioners of children with disabilities to provide practical tips for parents, as well as a place to share their views on raising a child with a disability. These contributions will be their ideas and stories, and not necessarily reflect the sentiments of those of autismmommytherapist

Today’s guest blogger is my mom, Susan Preston. Welcome!

Life’s Ironies

I have often said that being a grandmother is the best job ever, and indeed it is. I bring to this new “job” as grandmom a perspective that is unusual, since my career was to administer special education programs in public school districts. I had the advantage of working in districts that valued ALL students. With limited resources we would work diligently to find ways to support kids IEP goals and provide the services that were necessary to make that happen. Right now I am so grateful that I retired!

With the current economy and climate towards spending public dollars all too well-known, I can only imagine the additional stresses placed upon administrators, child study team members, case managers, teachers, therapists, etc. The needs of special kids have not changed. In fact, with the rise of children identified with autism, the challenges have only increased. More kids identified and more IEPs, translates into more funds necessary—not less! The challenges for those responsible in public schools now requires even more “thinking out of the box” ideas on how to make this happen. The majority of school district staff has been doing that for years already. Funds can only be stretched just so far to meet the identified needs. The challenges to provide with less must seem insurmountable on a daily basis. Indeed, the challenges have increased and the funds are less!

In speaking with my working colleagues and friends, I continue to be impressed with the caring that they exhibit towards our special kids. It reinforces for me that the individuals who have chosen the field of special education for a career are there for a reason—to improve the lives of special needs kids to the best of their abilities. So whether you are an administrator, teacher, case manager, service provider, etc., know that we as family members appreciate your dedication to our kids. We recognize the additional stresses that have been placed on you now, and know that as a “team” we have to continue to work together for the kids’ sake.

Whatever mixture of joy and pain at having two grandsons with autism has brought, the pride at their accomplishments is many. I thank all of the teachers and therapists through the years who have given us and the kids the skills to become the best that they can be.

Sincerely, Justin and Zachary’s grandmom

July 1, 2010

Guest Blogger Thursday

Posted in Fun Stuff tagged , , at 6:31 am by autismmommytherapist

Through my Tuesday and Thursday posts I’d like to provide a more widespread forum for parents, family members, and practitioners of children with disabilities to provide practical tips for parents, as well as a place to share their views on raising a child with a disability. These contributions will be their ideas and stories, and not necessarily reflect the sentiments of those of autismmommytherapist

Today’s guest blogger is my mom, Susan Preston.  Welcome!

“The Best Job Ever!!!

In May, 2003, I began the most rewarding job ever—that of grandmother. Being a mom to two great kids of my own through the years was super indeed. My mother had always told me that being a grandmother was exceptional, and like so many things in life, she was correct!  We had waited and prayed for this day for several years, and months before Justin arrived, my heart was full of love and plans were being made for a glorious new relationship. I dreamed of stories being read, lullabies being sung, cookies being baked, family get-togethers that now would include a great-grandchild, and hugs/kisses galore. And the moment I laid eyes on him, a bond was created that is like no other in intensity. I am not sure which of us lights up more when we see each other–it truly is a toss-up!

I first grew concerned about Justin’s development when he stayed with me for a week around ten months of age. I noticed that he paid particular attention to lighted  and spinning objects, and that indeed, when the ceiling fan was on in my kitchen he was more attentive to his meals. I filed that away with some concern, but knowing about developmental milestones, I kept it to myself. It wasn’t until we had a short visit at thirteen months of age that I truly became concerned at the new behaviors that I observed. I made an excruciating decision to discuss these worries with my daughter. Kim voiced her own concerns, and before I could choke out the dreaded and feared “autism” word, she did.

There is no easy or painless manner to deal with this diagnosis. I do not know which is worse–exploring what that could mean for the first time as a parent/grandparent, or having the experience and knowledge of the impact that this diagnosis will have. My career as a special education teacher and administrator provided me with an educators’ knowledge of autism and other developmental disabilities. I knew first hand the impact autism would have not only on Justin and the challenges he would face, but the emotional and financial impact on his parents as well. Throughout my career I observed families as they struggled to select the right educational programs, medical interventions, therapies, etc., all with the hope of a cure. As a grandparent the impact is a double one emotionally—not only does your heart ache and the ‘”worry gene”  kicks in big time for your grandchild—but this child’s parent is also your own child. No parent wants their child to experience such pain and turmoil.

Six years ago we began this journey with the goal of helping Justin become the best that he could be. With the birth of Zachary three years ago, and his subsequent diagnosis, the pain seemed almost unbearable for all of us. But our love for each other and those two boys has united this family with one purpose—Justin and Zachary will always know that they are loved, their successes will be celebrated, and we will attempt to make the correct choices to support them on their difficult and challenging journey.

And their successes are many. Justin is able to communicate his needs through intense looks, eye contact and his augmentative device. He is an absolute whiz with technology, and the family joke is that if we can’t figure out how to program a new device, give the remote to Justin!  And one of Zachary’s favorite expressions is “I need….”  which enables him to clearly articulate what that need might be. Zach freely showers us with loving words and appreciation. .

And as for my new Job—guess what?  I get to do all those things I dreamed of. I read stories, rock beautiful boys to sleep, sing lullabies, bake cookies, i.e. Gluten/casein free, and according to Zach, bake the best grandmom brownies ever!  And above all, I get tons of hugs, kisses and glows on faces when we see each other. We do all the activities together that I had hoped for—movies, amusement parks, aquariums, shopping, visit with family, and the beach–with some accommodations, of course. I attend school parties, see the joy on Justin’s face when he’s horseback riding (a particular favorite activity of mine), and experience tears of joy as Justin attempts to talk now. I am more certain then ever that one day he will be able to say my name, whatever that might sound like—and does that really matter as long as he and I know who he means?  With Zach all things are joyful. Zach enthusiastically tries everything there is to attempt in life, be it gymnastics, a new Thomas the Engine toy, a grandmom brownie, etc. And he is the kindest and compassionate three year old I have ever known—With other special needs kids he is so encouraging—“Come on, I know you can do it!” is an expression he uses when other kids are struggling in his gym class. How great is that?!!!! I do get to brag as a grandmother!!

And yes, this new Job is a bit more complex than anticipated and has required me to learn new skills. If Justin could share this information he would tell you that grandmom never could deliver that one-on-one program with any speed—truly, I think it was recording the data that was the hang-up at my age!!  And baking/cooking was a skill that had gone by the wayside during my busy working years. Now learning how to adapt recipes and bake goodies that are healthy for them are fun. The joy, love, pride and experiences that I have with my two incredible grandsons are exactly what I had hoped for. I celebrate each of their accomplishments and have learned to take “One day at a time”. I thank God that I have been given the gift of these two boys. Like I said—BEST JOB EVER!!!!!.