Autism-World

Harry, my 6-year-old bundle of joy, has autism highlighted by a profound speech delay. He is the little brother of my daughter, Maddie, 8. He has mixed expressive language disorder, sensory integration issues, and the stubborn will of his mother. But he doesn’t have any other underlying health issues that many autistic children face.

“Harry didn’t say ‘mama’ until he was nearly 4 years old”

Like many autistic kids, Harry’s social development is stunted by his lack of understanding of interaction. Coupled with the lack of communicative ability, Harry can be a frustrated little boy sometimes, and temper tantrums were very common in the early years. As a baby and preschooler, Harry would not make eye contact with anyone, couldn’t stand high-pitched noises, and wouldn’t allow himself to be touched for long periods. But the hardest part was the fact that Harry didn’t say “mama” until he was nearly 4 years old. In fact, his lack of first words was the biggest indication that something was wrong.

Diagnosis

Harry was about 18 months old when we first suspected there was a problem. He had few words to say, but being a pudgy, healthy boy, I assumed his appetite was taking up his time. It was a good pediatrician who started gently pushing me to consider that Harry may have a problem — so we started the yearlong process of eliminating theories as to why Harry wasn’t communicating.

As he grew and we watched new behaviors emerge, and after an interdisciplinary medical team evaluation at a leading children’s medical center, it was clear that Harry had autism. And with that diagnosis, my life was forever changed.

Treatment

Harry has been in specialized programs since his diagnosis, most of which are operated by the local school system or state disabilities programs.

As a toddler, Harry qualified for a program that provided early intervention for kids that were not yet preschoolers. This network provided resources for families of special needs kids, including helping with home programs and strategies specific to the child’s needs.

“I realized that Harry needed the resources of a much larger school district”

When Harry grew old enough for preschool, he attended a class with children who all had a variety of needs, not specifically autism. At this time, when he finished two years of preschool, I realized that Harry needed the resources of a much larger school district. So, the family moved to accommodate that need.

Currently, Harry is finishing first grade, attending a school with units specific for autistic kids. The entire curriculum is geared to the needs of autistic children and includes speech therapy, computer learning for nonverbal children, and emphasis on life skills such as bathroom training, self-dressing, and survival skills like learning your name and phone number.

As an active parent, I have concentrated on seeking out speech therapy, behavioral assessments, sensory integration therapy, and this year, occupational therapy. All of these are designed to force Harry to communicate, to bring the outer world into his inner self, and to give him the skills he needs to take care of himself, even with limited support from others.

Of all of these, speech therapy is the most important. Harry received two half-hour sessions through his individualized education profile (IEP). However, as most autism parents know, IEPs are grossly inadequate. So I supplement that with outside speech therapy twice a week. I am pursuing occupational therapy this year.

Changes

As far as lifestyle changes, well, there have been many, I’m sure, but since this is how my son has always been, I probably don’t notice them much. One big difference between a ‘regular’ parent and me is that I work from home in part to accommodate my son’s needs and to have the flexibility for whatever has to be done.

Having a special needs child often places a strain on a marriage — consequently it contributed to the end of mine, I believe. And Harry’s early behavior problems prompted me to separate my two children. Early on, Harry had aggressive behavior problems such as hitting, biting, and the like. Because Maddie was so overwhelmed by Harry, his lack of communication, his inability to control his temper at times, she was suffering.

“Are the therapies working? Yes. Harry has been building a vocabulary of words and phrases that is growing daily.”

After the end of my marriage, trying to raise and parent two totally different children — one with extreme needs — became impossible for me. So, my children’s father and I decided to have Harry live with me, while Maddie lived with her dad. The separation gives me the room to concentrate on Harry’s needs without Maddie feeling left out or forgotten. As parents, we can spend time with both the kids or singularly, so that the experience is good for all. It might not work for every family, but it works for us.

Are the therapies working? Yes. Harry has been building a vocabulary of words and phrases that is growing daily. This year, he has begun reading and simple math. And he can recite his phone number and his full name if asked.

Harry really is like many boys: he has to be reminded to brush his teeth, clean his room, scrub behind his ears, use his inside voice when he is excited, and to play nice. But in telling him all this, he meets my gaze, hears my words, and does what I ask — 100% receptive language. He understands me.

He also spontaneously says, “‘Night, night” and “I love you” among other things like “Let’s go to Target” or “Harry’s hungry!” — those moments are priceless.

I’m also finding that consistency and maturity help Harry expand his abilities. A year ago, I couldn’t take Harry to the store without him going ballistic wanting things and reacting to the word “no.” Now, since he has a bit of age on him and has learned about choices, I can go to Target and not create a scene.

Support

Emotional support comes from good friends who remind me constantly that my fears about Harry are the same as any mother’s: teaching him to live well and be happy. As for support groups and the like, I don’t really participate in one. My loss, I am sure.

Understanding is hard in today’s world. Folks are in a hurry, with no empathy for those who are different. I’ve gotten many a dirty look from shoppers who are baffled why my crying son isn’t under control. You learn to develop a very thick skin. Once, I was at a Wal-Mart, alone with my two kids, trying to pick up some supplies. I had no one to look after Harry and I knew that getting in and out would be a challenge. I finally got through the checkout, having a million times said ‘no’ to requests for checkout-line toys and candy from a little boy who doesn’t understand.

Harry had a meltdown episode as we walked through the electronic doors. He flung himself on the ground, screaming and yelling. People passed by me, shooting looks at this terrible mother and her spoiled brat. My daughter was in the shopping cart, crying as well, and Harry was writhing around and I couldn’t hold him, move the cart, and get to the car.

“The look on her face was priceless”

Finally, a woman passing by stopped to help me. She pushed my cart while I gathered my son, and helped me strap everyone in my car. As I shut the car door I started to sob. She hugged me and said all moms have bad days. And I told her that my son has lots of bad days because he is autistic.

The look on her face was priceless — now she knew I wasn’t really being a bad parent, just trying to survive something that was bigger than my family. And she realized in the same moment how judgmental every person was as they passed by my screaming kid and me. Then it was her turn to cry.

Understanding is hard to come by. I have learned not to expect it from anyone. For my son, I have l learned to stand up and demand it.

Concerns

I worry that I am not doing enough to help him, that I am not strong enough to endure what may happen. I fear that when I die, Harry will be alone and unable to cope. But really, when you think about all this, it’s not that different from parents of any type of child. We all work hard to do what we can and in the end trust in our Higher Power that it will all work out for the best.

Inspiration

I can honestly say that Harry inspires people and gives them hope. Harry is fiercely independent, so he has taught himself important kid things like putting on his shoes to sneak outside, make a peanut butter sandwich for breakfast, and pointing a web browser to lego.com to play online. He knows he has to communicate to get what he wants in life. And watching him struggle and succeed shows folks we all can accomplish anything.

“Harry read aloud to me that very day. Then his teacher showed me the first unprompted time Harry had written his name — no help needed. We both had tears in our eyes.”

Last year, after weeks of working with Harry one-on-one to make the connection that reading is worthwhile and can help you, he read his first sentence out loud to his teacher. After they completed the reading lesson, they moved on to writing and his teacher handed Harry a practice sheet. Without a word being said or asking him to do so, Harry wrote his name at the top of that paper.

His teacher was so touched and amazed at what they both had accomplished. At the end of the day when I came to pick him up, Harry read aloud to me. Then his teacher showed me the first unprompted time Harry had written his name — no help needed. We both had tears in our eyes. It was a moment so full of hope. And one of pride for a teacher working hard to help her students live better lives.

Advice

Never stop trying. Don’t take ‘no’ for an answer. Don’t stop looking for solutions, for help, for money, and for support. Don’t let anyone tell you that they know more about your child than you do. Trust your instincts and have faith in your decisions.

And remember that your attitude in approaching your child’s condition is the one thing you can control. No, you can’t change the fact that he or she has autism. But you can change what you are going to do about it. A diagnosis of autism isn’t necessarily a prison sentence. Truly, there are some children who will remain locked in their own worlds, but for many of us, there are endless days of laughter and love with our children.

This entry was posted on Monday, March 26th, 2007 at 10:36 am and is filed under Autism Stories.