Our Story So Far

Back in college, I took a class called “Oral Interpretation.” At the time it seemed like a good idea, a class to help me overcome my fear of public speaking. It did not. We had to take a piece of literature (a poem, a scene from a play, a newspaper column) and dramatically ‘interpret’ it for the rest of the class, just ten other students. Without fail, mine were dramatic alright: my voice, tinny, would shake; the emotion rising up from my quite-upset-stomach to take residence in my flushed cheeks; the clammy sweat making the shower an hour before unnecessary. I barely passed. In fact — true story — there was another KAL in the class and the professor mixed us up, giving her my C- and me her C+.

Fast forward twenty years or so. Has anything changed? No. Which is why I did not finish reading the following speech. I mean there were over 300 people in the room and they were all looking at ME. Add in the fact I wasn’t “interpreting” a piece of fiction or words written by someone else — no, they were my words and only about one of the most emotional times of my life. When I was asked to be on a parent panel for our EI program’s annual kick-off meeting, I envisioned sitting quietly until asked a question, certainly not giving a speech while standing at a podium, to an audience comprised of every single professional (OT, PT, SLP) who had helped us over the last 2+ years.

I did make it through the first two paragraphs before a kind woman offered to finish reading it for me. It struck me as an appropriate way to bookend everything that got us to where we stand today. Even if someone else had to “orally interpret” it.

My name is KAL and I’m a mom to twin boys who have autism. They just turned three a few weeks ago, so we are very recent graduates of the EI program. We may be unique in the length of time we were with EI: 2 years and 3 months. In that time, over twenty professionals have worked with our children.

Our road to the EI program was fortuitous. One of my twins had to have heart surgery when he was three months old. The surgery was a success, but the original condition and the surgery had put him behind in his physical development. One of my neighbors was a speech and language pathologist who worked with your program and urged us to call for an assessment. That was the fortuitous part. Had we not just moved into the neighborhood and met this individual, we may never have come in contact with the program or, at the very least, we would have lost valuable months. But as a result of her suggestion, we were evaluated and he qualified for PT due to a 25% delay. They were nine months old. After about four months of physical therapy, and soon after they turned one, we noted a language delay in both boys and they were evaluated for speech services as well. By January of 2006, there were many therapists in our lives to address not just the physical and speech delays, but also the fine motor ones and growing sensory aversions.

All along, our pediatrician thought it was great we were receiving early intervention services, but didn’t think they were necessary. All the usual cliches were offered: “They’re boys, they develop more slowly,” “They’re twins, twins have their own language,” “They’ll catch up.” But at their 18-month, well-baby visit, our pediatrician did suggest we call a developmental pediatrician just to “rule things out.” Still, the words “autism” and “autism spectrum disorder” were never mentioned.

Autism meant absolutely nothing to us at the time — something that happened to other children, not our own. The first time I saw the word “autism” was when I googled the Kennedy Krieger Institute and it jumped out at me from their home page. I remember thinking “Autism? But what does that have to do with us?” At this point in time, we had been with the EI program for over nine months. Although there seemed to be general consensus that both boys were experiencing significant delays, the autism spectrum was still not said aloud. I made the call to KKI and we were put on a six-month waiting list — and still I did not understand. As we continued to receive speech therapy and OT and PT, I thought of this time as “band-aid therapy”, a cure for what’s ailing right now, but sure to be outgrown and certainly not needed down the road.

Now, as I look back, Autism was like a wailing ambulance approaching from a distance. Hearing it so far off made me uneasy and more and more anxious as it got closer. I remember saying once: “I feel like everyone is thinking autism and no one wants to say it.” A few months later, a member of our team told us about a new classroom that had only recently started. The prerequisites: an ASD diagnosis and having turned two. We were still on the waiting list for an evaluation with a developmental pediatrician with no idea when we might get in, so we agreed to an evaluation by an EI staff psychologist to speed up the process. I wanted my boys to get anything and everything that might help them catch up.

The autism siren was still wailing of course, and it had gotten much closer and louder, but the day I read the psychologist’s report was the first time it hit full-force. I don’t think I really believed it until then. They were just shy of their second birthdays and we had already been in the EI program for over a year. As difficult as it was to accept at the time, I know that we were fortunate that they were diagnosed so young. KKI concurred with the diagnosis shortly after and we began attending a very special ASD classroom in September of 2006, right after they turned two.

The centers-based classroom with its use of ABA and discrete trials helped one of my boys almost immediately. He was non-verbal when he began and he had several stereotypies that interfered with his learning and play. The change in him was, and is remarkable — he started talking and is a very social child. My other son, who is more severely affected by his autism, did not make much if any progress in the classroom. So in January of 2007 he began a home ABA program: 10 hours a week of one-on-one therapy. Two months later, the one-on-one therapy was augmented to 16 hours a week and he left the ASD classroom. His progress has been slower going, but he is also a different child now.

Part of this program was a terrific parent component that my husband and I benefited from greatly: The Hanen “More Than Words” program, an 8-week course led by a wonderful SLP. It was really helpful and eye-opening to find new ways to communicate with our boys.

To each of you who have been involved in my sons’ lives, either directly or behind the scenes, I cannot thank you enough. It takes very special, dedicated people to work with children who have special needs and we are so very fortunate for the amazing team who helped not only them, but our entire family. I was asked to speak here today, however, with an eye to what I think worked and did not work for us. The following are just a few thoughts I’d like to share.

GETTING THE WORD OUT ABOUT EARLY INTERVENTION: We made that initial call to EI back in 2005 because we were lucky in the neighbor department. I am concerned for other parents who might not have a therapist on their block. Possibly, because my twins were full-term and a good size, I never received information from the hospital where they were born. I’m not an expert in developmental delays, but I’d like to think that there were enough flags: twins, a heart defect, sensory issues, speech delays — that some health care provider would have said “Hey, here are a few programs you might want to know about.” I wish that hospitals and pediatricians would be more diligent about catching developmental delays and referring parents to EI sooner. And I wish EI could do a better job of increasing awareness within the community as well. I’m not asking for a Superbowl commercial, but perhaps they [EI] could rework the spots I do see on public television so that they speak to more parents — those who know nothing about developmental delays or that sometimes it is a euphemism for the autism spectrum.

THE “NO DIAGNOSIS” DILEMMA: Recognizing that EI staff are not allowed to “offer a diagnosis,” I still wish that our team’s suspicions had been shared right off the bat, as in: “We suspect they may be on the spectrum, we encourage you to get evaluated and do some research.” Precious months should not have passed before these suspicions were shared with us. While it would have been difficult to hear, it would have been better to know what we were potentially dealing with as soon as possible. There are practical reasons: It can take months just to get an appointment to get a diagnosis. There are personal reasons: It takes time for parents to work through denial, anger, sadness, and grief, on the way to acceptance.

As parents we look to you for guidance and your professional opinions, especially if we are first-time parents — we don’t always know what is typical or not typical. You have a lot of power AND a lot of responsibility. While I do understand the “no diagnosis” rule and its importance to protect both sides, I also know that members of my sons’ team suspected right away that they were on the spectrum. I urge you to be as straight as you can with us. And I encourage you [EI] to seek some way — some middle ground — that allows staff to share their “informed suspicions” in a proper, non-diagnosis, context.

SERVICES AVAILABLE. My point about the diagnosis dilemma is a plea for better information-sharing about your instincts, or initial suspicions, as they pertain to our children. My last point is similar, but it is a request for better information-sharing about available services. As parents, we may begin as novices when we enter the EI program, but some of us quickly become experts on our children and their delays. While we are endlessly grateful for the intervention we did receive, I wish that we had known, upfront, everything that was available to my sons, especially the more intensive home ABA program. I felt, at times, that knowledge of these services was either closely guarded by staff or simply not known. It should have been determined much earlier that my one son needed more intensive, one-on-one therapy. If we are to be informed partners in determining our child’s IFSP, we need to be aware of all the services and programs that could help each meet his or her goals.

In closing, I’d just like to say that nobody wants to be the one to share a life-altering label with a parent. Nobody wants to deal with the potential fall-out. Just as no two children on the autism spectrum look alike, no two parents will have the same reaction to hearing it. But I submit that it’s imperative that we do hear it and as soon as it is suspected.

While my sons are on the autism spectrum, I recognize that EI serves a much broader group. Some children might age out at three and go into a traditional preschool. But for those of us who will face several years punctuated by annual IEP meetings, I ask that you all, as providers to our children, help us become the most knowledgeable — and therefore successful — parents we can be. Every one of you chose this line of work — you went to school and trained for this — you are experts in child development. Parents of children with special needs, however, don’t have years of preparation or training before being faced with a diagnosis and immediate and potentially life-altering decisions. We become experts out of necessity. That is why we look to you and we need all the information and guidance we can get — whether it’s about available services or our kids.

Thank you.


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