Living with autism: the adolescent years
August 15, 2014
FORT CARSON, Colo. -- (Aug. 15, 2014) An 11-year-old boy wakes, eats breakfast, brushes his teeth and combs his hair. It is a hot summer day so he takes his shirt off and goes in the backyard to jump in the pool. It is time to leave and the struggle begins.
Isaac refuses to get out of the pool when his mother, Sharna, asks him to.
She shows him a piece of paper with a schedule on it, finally convincing him to come back inside and get ready to leave.
Isaac suffers from moderate autism and as the summer winds down, he is transitioning into middle school.
Maj. Matt Fitzgerald, staff judge advocate, Headquarters Support Company, Headquarters and Headquarters Battalion, 4th Infantry Division, and his wife, Sharna Fitzgerald, have raised a child with autism for about 10 years and said it gets easier with time.
"We were stationed in Germany when the doctors said that Isaac -- 2 years old at the time -- had several signs of autism, but they didn't have the facilities that we could go to (to) get the full diagnosis," Sharna Fitzgerald said. "I was angry after Isaac's initial diagnosis. I did not want to get out of bed. I knew something was wrong, but when I heard those words it was just shock. I don't even know how to explain it.
"I was thinking, 'Oh my God, there is something wrong with my perfect baby,'" she said. "You think to yourself, 'My baby is perfect, how can there be something wrong with him?' No one wants that for their child. I was miserable, and I couldn't focus. I couldn't make dinner. I couldn't wash clothes. I felt like I was on a merry-go-round. I didn't know what to do next."
Sharna Fitzgerald said she decided to move stateside with her parents to get Isaac fully diagnosed, while her husband finished his time in Germany. She said once Isaac was diagnosed he began receiving the therapy he needed.
Perspectives and acceptance
"Isaac didn't talk until he was 6 and didn't actually respond and communicate with us until he was almost 9 years old," said Matt Fitzgerald. "There is some parental shame where you feel like you have done something wrong … 'I shouldn't have eaten this, I shouldn't have (given) him that shot,' so on and so on."
After a talk with her father and a visit to the hospital, Sharna Fitzgerald said she realized it would be difficult, but they would get through all the challenges ahead. During the process of getting Isaac's autism diagnosis, Sharna Fitzgerald had a wake-up call that put everything in perspective for her.
"We were over at the hospital getting a hearing test for Isaac," she said. "I am in the elevator feeling sorry for myself (when) the doors open to the elevator and this lady is pushing a wheelchair in front of her and pulling another wheelchair behind her. I looked and saw they were her children. They had little braces on their necks and towels to wipe their mouths. I sat there and looked at my dad the whole time. They got off a floor before us and I started crying. I said, 'Isaac is going to be fine. He can run, he can jump, he can play and he laughs.' That was a true eye-opening moment. That is what helped (snap) me out of my self-pity."
The Fitzgeralds said they read a poem a short while after Isaac's diagnosis that has motivated them over the past decade.
"There is a poem written by Emily Perl Kingsley called 'Welcome to Holland' that has helped ground us," Matt Fitzgerald said. "She does a great job describing what it is like raising a special needs child.
"She said that having a child is like all of your life planning to go to Italy. You read everything you can about Italy. You learn everything you can about Italy. You plan all of your trip itinerary for Italy.
You set your expectations for Italy. The next thing you know, you land and the stewardess says, 'Welcome to Holland.' That is an autistic child.
"All of your life you say, 'Oh, I am going to have kids and they are going to be healthy and happy," he said. "They are going to have 10 fingers and 10 toes; they are going to grow up a certain way and go to college … an autistic child is a diversion from Italy.
"Once we read that, it changed our perspective of how we viewed our challenges with Isaac," Matt Fitzgerald said. "The point of the story is you know that Amsterdam is a beautiful city, but if you spend all of your time wishing you were in Italy, you're going to be miserable. You are going to miss all of the beautiful things that Amsterdam has to offer if you keep thinking you are going to Italy."
"He is Isaac; he's autistic; it's what he is," Sharna Fitzgerald said. "I have learned to accept it."
The Fitzgeralds recommend parents facing similar challenges keep an open mind. They credit a lot of Isaac's success to his various therapists and applied behavioral analysis. They advise constantly being in contact with the teachers and therapists.
The Fitzgeralds know their son will never be able to do certain things but feel as long as he is happy, healthy and well cared for that is all they can ask for.
"Some of the biggest successes we have had with Isaac are him talking, being able to follow directions, recognizing sight words, dressing himself and buckling his seatbelt," Sharna Fitzgerald said.
The Fitzgeralds said they are now able to take their eyes off Isaac and let him be a child.
"That has been a decade-long struggle," said Matt Fitzgerald. "Right now, he is upstairs and I have no idea what he is doing. Five years ago that would have never happened; it would've been, 'Where is Isaac? What is he doing?' If he wanted to go outside, you went outside."
Sharna Fitzgerald said Isaac's behavior has improved a lot and credits that to all his therapists working together to do what is best for him.
"With Isaac we have seen a huge increase in his communication skills and that is the biggest piece," said Amanda Jones, autism program manager, Colorado Autism Center in Colorado Springs. "He knows how to ask for a break now instead of engaging in inappropriate behavior to get what he wants.
"When Isaac first got here he just wanted to play with balloons and self-stimulate himself with similar objects. He would hit a balloon against his hands or rub it against the side of his face. He wasn't as connected to his clinician and the world around him. Now he is really involved with his clinicians and understands what is going on."
With all of the therapy Isaac has received he was able to walk with his class during his fifth-grade graduation. Sharna Fitzgerald said the small things make her happy.
"Isaac was able to walk up by himself, with minimal help from his peers, to receive his elementary school diploma," she said. "I felt like, oh my goodness, that is what we are striving for, Isaac to be as independent as possible. Instead of having his aide walk him up there and looking different than everyone else, they found a way to use his peers -- that made us feel so proud. I am so thankful to his teachers and peers who did that for him. They worked so hard with him to be able to do that all year. That moment meant more to me than anything else all year."
Individualized education plans
As servicemembers are required to move every few years, transitions can be rough. With a special needs child, the challenges can be multiplied.
An individualized education plan helps a school tailor a child's educational career to the needs of the child, based on his academic abilities. If there are behavioral concerns that need to be addressed they will be in the child's IEP, a legal document the schools are required to follow.
The Individuals with Disabilities Education Act -- commonly known as the IDEA -- is the federal law that governs what schools can and cannot do for the child.
"It is important for parents to do some research to learn what their rights and responsibilities are, that way they can go into the IEP meeting with knowledge of what the law is and what the school is required to do," said Jessica Brown, systems navigator, Exceptional Family Member Program, Fort Carson.
When moving schools, it is important to make sure the previous IEP is as detailed as possible, said Brown.
"When a Family moves and they enter a new school, that school is required by law to provide comparable services. Whatever is in that current IEP, they have to provide those services until they come up with a new one for that school."
Brown said there can be some difficulties when a child is transitioning from elementary to middle school. It is important to keep open communication to help make the transition as smooth as possible, she said.
"There is such a large spectrum when it comes to autism -- not every child fits on the same IEP or has the same educational needs that their peers do," said Brown. "The environment is way different and can be overwhelming, particularly when they have to transition classes. I feel it is really important for parents to keep that communication open between both schools during that transition to make sure the child's needs are being met."
Sharna Fitzgerald said the IEP process is what a person makes it.
"The IEP process has been great. It is all about how you interact with the teachers. If you are just dropping your child off at school every day and the only time they see you is at the IEP meeting, you are not going to have a good relationship with them.
"If you pop in and say, 'I want to spend an hour observing class' … (you) show that you are engaged. You come in with questions and you explain where Isaac has problems and where he can use some help. You explain what you are doing at home and ask them what they are doing at school so you can reinforce it at home. You build that relationship with them."
What is autism?
Theresa Yakich, autism program manager, Colorado Autism Center, explained that autism, or Autism Spectrum Disorder, are general terms for a group of complex disorders of brain development that begins at birth or within the first 2.5 years of life.
"These disorders are characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors," Yakich said. "Most autistic children are perfectly normal in appearance, but spend their time engaged in puzzling and disturbing behaviors, which are markedly different from those of typical children.
"Children with less-severe cases may be diagnosed with Pervasive Development Disorder or Asperger's syndrome," she explained. "Asperger's is characterized by normal speech and verbal abilities, but displaying less severe autistic social behavioral problems."
Yakich added that military children on the spectrum have an even harder time, constantly having to adjust every few years from changing duty stations.
"It is always tough for a child with autism to have to start over with a group of people," she said. "Military life is particularly difficult for children with autism and their Families. They have to frequently change duty stations and face social uncertainties with the ever-changing faces of new peers."
Pete Libby, lead behavior clinician, Colorado Autism Center, said that some of the indicating factors to look for are not giving eye contact, not having a social smile in infancy and not attempting to imitate sounds.
"Autism is different; it is not cookie-cutter, which is why the puzzle piece is so perfect for the symbol of autism. Every case is different. It is difficult to define because each child with autism is different -- no two are the same."
An estimated 1 out of 42 boys and 1 in 189 girls are diagnosed with autism in the United States.
More than 23,000 military children have a diagnosis on the autism spectrum.
Autism is the fastest growing serious developmental disability in the U.S.
Autism treatment costs a family $60,000 a year on average.
There is no medical detection or cure for autism.
The following "red flags" may indicate a child is at risk for Autism Spectrum Disorder.
If a child exhibits any of the following, ask a pediatrician or family doctor for an evaluation:
No big smiles or other warm, joyful expressions by 6 months of age or thereafter
No back-and-forth sharing of sounds, smiles or other facial expressions by 9 months
No babbling by 12 months
No back-and-forth gestures such as pointing, showing, reaching or waving by 12 months
No words by 16 months
Any loss of speech, babbling or social skills at any age
No meaningful, two-word phrases -- not including imitating or repeating -- by 24 months