Family…
Ben with his ITAP team on the last day. These ladies couldn’t be more like family if they had the genetics to prove it.
Many of us have enjoyed more family celebrations in the last couple of weeks than is typical throughout the entire rest of the year. What better way to wrap up a year than celebrating with those closest to us?
Our family has changed many times over the years with marriages, babies, divorces of siblings and parents, more marriages and more babies. Regardless of the physical make-up of the family tree, our family is blessed beyond measure as we are bound by love.
I’ve grown to learn that family isn’t always just those connected to you by genetics, but also by experience. It could be the other moms we freeze our tails off with on the bleachers at our kids’ sporting events, or it could be the moms we bear our hearts to in Bible study groups.
This year, we’ve learned that family can also be expanded to include those who teach and help your child through therapy. These ladies may have been our son’s teachers and therapists, but they have also become our trusted confidants and mentors in navigating life on the spectrum.
Ben was diagnosed with autism, expressive/receptive language disorder and a motor delay in May of 2012. In June, he began attending the Intensive Therapeutic Autism Program (ITAP) at Easter Seals in Peoria. For 26 weeks between June and December, we made the trek to Peoria twice a week and entertained ourselves throughout the afternoon while Ben was in therapy at ITAP for three hours, two afternoons a week; all this, after he’d been at preschool in Avon all morning. On those two days, he boarded the bus with the best bus driver ever, Mr. Terry, at 7:30 a.m. and returned home after three hours of intense therapy at about 6 p.m. To say they were long days would be the understatement of the year.
I know there are many a folk who make the drive for work five days a week. My hat’s off to you. I honestly don’t know how you do it and maintain any sense of normalcy in your life. I struggled. Perhaps it was the kicking and screaming and crying of a little boy who just wanted to go home and run down to the tree and back. Perhaps it was the seemingly endless hours of hanging out in the toy aisle at any number of local retailers entertaining his three-year-old little sister. Perhaps it was the worry that the older kids were feeling slighted by the need to assist in keeping things running at home. Perhaps it was the not knowing if any of it would sink in and help. But it has. It has helped in so many ways.
We’ve seen our son grow from a little boy who would retreat to his room and immerse himself in Blue’s Clues and Barney in an attempt to block out the rest of the world when anyone would come to our house into a boy who will peer over the half wall above our entryway and say, “Welllllllllll, hello ‘dere!” greeting visitors. I’ve watched my son grow from a scared little boy who cried at the onset of ITAP to one who happily went into class saying, “See you later, Mom.” And most recently, I’ve been blessed by his ever so soft words, “I … want to go back ‘dere.” when he saw the picture of himself with his ITAP team. This from the boy who on most days would cry and scream, “I want to be all done with Easter Seals school.” Truly, it was not the school or the therapy, it was the drive, for once he saw the school, he was smiling and pointing and saying, “ ‘Dere’s Easter Seals School.”
Yes, these ladies have grown to be our family. And so have the parents of the other children in his class. At ITAP, there are six kids per class, with at least a 1-1 ratio with adult therapists. It’s just an amazing program. We cannot recommend it highly enough.
I doubt I’ll ever forget the day I walked in to get Ben and met a classmate of his walking out with his dad. Like most children on the spectrum, Daniel* struggles with eye contact and communication is sometimes difficult at best. So, when Daniel looked me straight in the eye as we passed, I noticed. My heart leapt for joy for Daniel and his dad that he was able to make and maintain eye contact. And then it hit me, Daniel’s coat looked very familiar. I mentioned it to his dad, but didn’t think much of it because there’s another classmate whose coat is very similar to Ben’s as well. However, when I turned and watched them walk away, I realized Daniel’s backpack was also the same as Ben’s.
I asked his dad if we could check it out & of course we did, only to learn that Daniel had grabbed Ben’s by mistake. We laughed as his dad explained Daniel had just had a birthday and he thought it was maybe new stuff or hand-me-downs from a cousin and again when I explained inside of Ben’s coat bore the name of a cousin of his who had handed down the coat to him. Isn’t it great we’re all in this together?
We ventured back inside where we had another good laugh explaining it to the gal who met us at the door wondering why Daniel was back inside. And then it happened. Daniel pointed to the coat and backpack, looked me square in the eye again, and said, “Ben.”
Tears filled my eyes and that’s when I knew that sometimes family has nothing to do with genetics or marriage or any legal documents. Family is comprised of those who touch our hearts.
Thank you, Daniel and dad. Thank you, ITAP staff. You will forever be etched in the hearts of the Janssens as “family”.
* Names have been changed for privacy. ∞
Finding JOY
When someone loves you, they don’t have to say the words. You can tell by the way they treat you.
It’s that time of year again…trees, lights, music, gifts and Christmas cards to name a few. What a lovely way to wrap up a full year of running and doing, but to take some time to reflect on your family’s adventures and share your joys with friends and family.
I remember as a kid, Christmas cards were just that: cards, with a message about Christmas with a few handwritten lines of well wishes, signed with love. Now, as greetings come in, it’s mostly pictures, which we love, sometimes accompanied by a printed letter, but rarely do we see any handwriting any more, even on the envelopes. On a cynical day, I often wonder if the sender even thought of us as they stuffed their envelopes and slapped on the labels. I remind myself we made the cut to receive a card and with the price of postage, that has to say something, right? Don’t get me wrong, we do love the picture cards. In fact, we post them on our cupboard doors and enjoy seeing our friends’ faces all year long.
Over the years, we’ve done the same, except we’ve never quite been with it enough to do mailing labels, so if you get greetings from us, you can be assured, we have thought of you as we address your envelope. The technological wonders of facebook and email have sure simplified the process though as we can update our status or post a blog entry and easily bring everyone up to date. The last couple of years, we haven’t included a letter, except to those folks we know aren’t online and so we’re back to our early years, back to the days of a card or a picture. Despite the chaos of our lives, we’ve found a way to simplify a bit.
I’ve found myself focusing on simplicity a lot lately. It’s not been a conscious effort, but as I think it through, it’s been necessary. In the midst of family life on the autism spectrum, I need simple. That’s where we find joy, in the simple moments.
We have five children, ranging in age from 3 to 14. That right there is the recipe for chaos and challenge, no? Our youngest son is 5 and has autism: more challenge. It’s also a recipe for great joy and blessing. Because we live on the spectrum, we recognize joy in the more simple moments of life.
I treasure the sound of “I love you” rolling off the tongues of all of my children, but I remember specifically the first moment I heard those words from our Ben. I remember exactly where we were and exactly what each of us were doing. These are moments every parent longs for, but spectrum parents may wait years to hear the words. Some never do, not because the child doesn’t love them, but they simply cannot form the words. They find other ways to show it, but to hear those words, that is joy, especially when you’ve waited four long years.
Looking back over 2012, there have been many challenges and many joys. One of the struggles living on the spectrum is that you never really know what kind of day you’re going to have. You may have everything planned and set up so that nothing could possibly go wrong, but any little thing can cause a meltdown. You have to realize this and accept it and work with the child. And when the moment passes, recognize that it is past and move on with your day. Dry your eyes and the eyes of your child, share a hug or a high five and move on, sometimes several times a day. And when you tuck that precious child into bed at night, let the joy that you’ve made it through one more day sink in and resonate your soul as that little one puts both hands on your cheeks, says, “I love you, Mommy.” and seals the deal with a sloppy kiss on the cheek. Yes, that is joy.
May you all experience abundant joy this season. From my family to yours, Merry Christmas!!
Family Gatherings
Family gatherings can be overwhelming for the spectrum child, but with love, understanding and acceptance, it can also be a wonderful adventure.
Family gatherings are as much a part of the holidays as the music, the lights & the gifts galore.
We all have family gathering horror stories. They’re out there for sure. But for the most part, after a year or two (or ten) have passed, we can laugh about those quirks which make our family ours.
For a child on the autism spectrum, family gatherings can be a bit nerve-racking. Scratch that, downright out of my mind overwhelming. This is not because they are bad kids. It’s so easy to pigeon hole these kids and think, “Man, he needs some discipline.” “If only mom wasn’t so easy on him.” Or “Wow, so glad my kids aren’t like that.”
If only you knew these kids…if only you knew, they’re doing the best they can. It may not be what you would consider “good,” but they truly are doing their very best. What more can we ask of them? Let me answer that simply: NOTHING. Our very best is all any of us can do. It’s just that your best and my best are quite different because we are different people. The same is true for the autistic child.
Autism is a neurological disorder which effects how the brain processes information, both incoming & outgoing. So just because you say, “You’re being too loud,” doesn’t necessarily mean “Be quiet.” It might just mean, “Hey, someone noticed I can make a loud noise. Cool!”
The rate of autism diagnosis is continually on the rise. Current numbers indicate that autism affects 1 in 88 children; 1 in 54 boys. Our youngest son, Ben, is one of them. Those numbers are staggering. If you don’t personally know someone who lives with autism, chances are you know someone who knows someone, or you will very soon. It might be your child, grandchild, niece, nephew, cousin, or a friend’s child. Eventually, you will know someone who has autism, or lives with it in their family.
Sensory overload is common for most of us around the holidays. The lights, the music, the laughter – it’s all good stuff, but it can become overwhelming, even for the neurotypical individual. For the spectrum child, this is everyday life.
As you prepare to spend some family time with the Always Unique Totally Interesting Sometimes Mysterious kids in your life, please consider this letter, released by Easter Seals, and written from the perspective of the spectrum child, and think about what you can do to make this a special time for them as well.
*****
A Letter to My Family & Friends
While visiting with family and friends should be a happy time, it can be very, very hard for me. Why? I have autism; this is a lifelong developmental disability that affects how my brain functions. I am not “bad;” I am not misbehaving. I am not intentionally trying to get away with something. I am communicating within my environment in the only way I know how. Words do not come easy for me; listening to everyone talk is like being in a foreign country with no interpreter to help me with the language. So I “talk” through my actions.
I smile or laugh when I am happy. I may also smile and laugh when I am nervous, because my emotions are hard for me to understand and control. I yell and cry when I am upset. I may also scratch or pinch, because this is how I let people know I want them to back off, or how I say “I don’t like that!” I throw things because I like to watch them drop, and I like to watch other people pick them up. Since I have trouble knowing what you’re saying, I watch your face, and when your face turns red or your eyes squint when you’re angry, that is interesting to me, because your face changed. I don’t know “angry;” I know that things I look at can change in shape or color or size or direction, and that is interesting when sight is my best sense.
Telling me to “stop” or “don’t” doesn’t help. I already know what NOT to do; tell me what TO do instead. “Feet stay on the floor” is better than “stop climbing.” “Hands stay to yourself” is better than “don’t hit.” “Quiet voice” tells me what to do; “you’re too loud” doesn’t. Even if I can talk in sentences, I may lose the ability to understand speech as my anxiety increases. Just like everybody else, the more nervous I get, the less words I can find.
I have trouble taking everything in at the same time. I hear everything; I see everything; I smell everything; I feel everything. I cannot filter out what is unnecessary, because I don’t know what exactly is necessary. So everything comes in at the same level of importance. When there is a lot to see or hear or smell or feel, I get overwhelmed. It is too much, and the only way I can let you know is by my actions. When I am overwhelmed, I am only trying to protect myself from more input. I may run away and hide, or hum or scream to drown out the individual voices, or rock to soothe myself, or hit or bite because “too much” is painful and I just want it to stop. Talking and touching will just keep sending input into my already over-loaded senses; I need to stop the input and get calm. Finding a place to get away from all the input will help me calm down.
To help me adjust to all the changes in the holiday season, watch me. See how I react to my environment. See what makes me wince or pull away, and what draws me closer. View my actions as words, and answer what I’m “saying.” Slow down the input you’re giving me; give me time to process all the new sights and sounds and smells and textures. Give me a space to be by myself, to regroup, to calm. Help me figure out this foreign language by using fewer words and more gestures. Understand that I’m really, really trying….this world is a big, fast-moving, word-based place that confuses and scares me. Help me figure it out. And thank you for understanding that I don’t mean to do things the wrong way; I’m just doing things the best way I can under the circumstances.
*****
And just because the spectrum child in your life may not say it with words, if you watch for it, you can hear them say “I love you” in a million different ways.
Shopping for the Special Needs Child
We are blessed that Ben’s grandparents and aunt are always on top of his developmental level and interests.
Christmas shopping…ahhh…the shopping. I just love it. Not so much the buying, but the shopping. As the parents of five children, our dates are pretty limited in this phase of our lives. But Christmas shopping, now that’s a guaranteed date at least once a year.
It’s such a fun time, searching for the perfect gifts for those you love and imagining the joy the kids will have with their treasure, not to mention seeing the twinkle in their eyes in that moment just before they rip it open, and if you’re the parent of a special needs child, standing guard ready to distract the child with an old favorite. Why? Simple, not all gifts are appropriate.
Christmas & birthdays are an exciting time for any child. Let’s face it, kids and presents were just made for one another. But for the shopper, it can be difficult. Realizing that a child who may be chronologically 5 years old may only developmentally be 3 or 4 can cause some confusion for the gift giver. But it doesn’t have to be this way. All you have to do is ask. Ask the parents. Ask the teachers. Ask the therapists. Just ask.
As parents, we are always more than happy to share what are good gift ideas and what would be best to stay away from. Understand, we are not telling you what to buy for our child, just giving direction on what would be most appropriate for him. You wouldn’t give a 3-year old who likes to play with matchbox cars a model suitable for an adult to construct. It’s just simple logic. However, for a 5-year-old living with autism or any other developmental delay, a set of Legos geared for a 5-year-old can be just as daunting.
If you want things to be a complete surprise and therefore don’t want to ask the parents, check in with the school teacher or therapist. There may be tools they use which may be helpful at home. “Tools” may just be the perfect toy for a child! You just wouldn’t believe how fun some of these tools are for kids.
Another option may just be an open heartfelt conversation with the parents about their needs. You might find that they have been saving up for a tool disguised as a toy for the child, and your contribution could be what tops of the tank.
Bottom line, Christmas is one of the most magical times of the year, especially for children. Putting a little extra effort into shopping can help provide the spectrum kids you love with their own perfect gift, and that will be a precious gift to their parents.
And now, I think it’s time for a little shopping…
Hello world!
If you get the Argus-Sentinel, you might just notice a new column in this week’s edition. I have yet to see it, so I’m not sure what (or if) it’s titled, but for the sake of knowing how to compartmentalize things in my own mind, I’m going to refer to it as “The Spectrum Scene”, only because that’s simple and well, I need simple. The Spectrum Scene was also available as a web address, so again, with the simplicity thing.
Each week this month, you’ll find a column related to life with a child on the autism spectrum. Autism affects 1 in 88 children, 1 in 54 boys. Our youngest son, Ben, is one of them. This column came out of the overwhelming response to our oldest daughter, Jaclyn’s business interests in helping us fund Ben’s therapy at Easter Seals through the Intensive Therapeutic Autism Program and her efforts through DuckTape for Autism. If you haven’t checked out the page dedicated to her efforts, you really should. It’s amazing what she can make with duck tape!
Whether the column lives past 2012 remains to be seen, but Jaclyn’s (and our) focus on raising awareness will not wane. With awareness comes understanding, with understanding comes acceptance. Isn’t that what we all want? To be accepted? Of course, as parents, we want the best of life and all it offers for our children, but when it all comes down to it, we want them to have a sense of acceptance, perhaps not necessarily in the mixed up notions of our big old world, but at least in regard to who they are, especially within our own sphere of influence and the communities in which we live. For the autistic child, this can only come through awareness and understanding.
And with that end in mind, welcome to The Spectrum Scene.
thespectrumscene 