Navigating the Storm After an Autism Diagnosis
There is a Huge Learning Curve for Parents of Children with Autism
Aug 14, 2009
Autism. Parents who hear this diagnosis in association with their child have many emotions whirling around inside. For the child to have the best possible experience with the many types of therapies, parents must put the feelings aside and focus on the process in front of them.
One Story of a Diagnosis of Autism
Sean and Denise Jansen are no different than the thousands of families who have had the diagnosis of autism come into their child's life. Their son Luke had a few developmental and medical issues in his first year, but everything soon seemed to be moving along at an appropriate pace.
When they went for the routine MMR (measles, mumps and ruebella) immunization at 18 months, everything changed. Luke had a negative reaction to the shot and could no longer say the words "dada" and "mama" and the few others he could say before and seven years later he is still, for the most part is non-verbal.
The Jansens do not blame the MMR shot exclusively for their son’s eventual diagnosis of autism, but they do feel it was the last straw that broke their son’s immune system causing the autism to flourish.
Previous to the MMR, Luke had trouble with his digestive system - kidney and urinary tract infections as well as constipation and an intolerance for milk. He had been on numerous antibiotics for two and a half years leading up to the MMR. The Jansens believe all of these factors as well as some genetic predispositions played a part in Luke’s autism diagnosis.
Luke’s path of autism has been bumpy at best. “When Luke was four, we knew going into Vancouver’s Sunny Hill for testing that he would probably get a diagnosis of autism. Yet when I heard the diagnosis I almost passed out. Something inside of me died,” Denise shares.
Choosing Therapies for a Child with Autism Can Be Stressful
Specialized doctors promote early intervention for autism, suggesting up to 30 hours a week of therapies for children to reach a “high functioning” status. In British Columbia, children diagnosed with autism under the age of six receive $20,000 a year for behavioral, occupational, physical, speech, and some music therapies. Parents can also spend 20% on equipment such as computers or games used in the countless hours of therapy. This all sounds pretty good, but for parents caring for a special needs child 24 hours a day as well as the shock of the diagnosis, it is a tremendous task.
Like one in 95 parents of boys in North America today, the Jansens had to instantly put their emotions aside and become experts on Luke’s condition.
Denise shares the complications that come with the identification. “After the devastating diagnosis, you have so many roles to play: mom, wife, therapist, accountant, employer. Yet, where do you begin? You know you have to conquer it all, but, realistically, you can't. You are literally exhausted mentally and physically all the time. It's no wonder divorce rates and physical illnesses are high, and mental issues can occur in parents of special needs. You are being pulled in so many, many directions, and you don’t know exactly where to put most of your energy. That pulling feeling that never goes away. It is all-absorbing.”
Unfortunately, the stress of having a special needs child can take a toll on the parents’ relationship, with divorce rates of up to 85% during the first five years after diagnosis. Fortunately, Sean and Denise have decided no matter how hard things are, they are on Luke’s team together.
It is also easy for these parents, especially the mom who is typically the prime caregiver, to feel secluded from society. “You feel slapped in the face when someone gives you a strange look because of your child’s behavior,” Denise shares. “It took quite a while for me to get over that big lump in my throat, but now I hold my head up high and smile at anyone who gives me a strange look. Luke is my son, and he is special. We are striving for him to have a good life and manage himself in society. It is society’s job to accept him for who he is.”
The Jansen's Today
Today, Luke is full of energy and ambition. He continually seeks out new ideas and loves to engage in social activities with people. Currently, he uses an electronic speaking device to communicate. He has been improving vocally and has been known to say a few words recently. Luke will be attending grade three this year. Academically, his reading and comprehension skills are above average. However, he has trouble understanding the values in math and has difficulty focusing on one given task. He also gets frustrated with his limited ability when it comes to fine motor skills or processing emotion. Luke has a full-time teacher’s aid in the classroom.
Denise shares how the journey of autism provides insights into life. “Typical parents don’t get the gift of truly celebrating milestones. It took two years for Luke to learn how to use a straw. When he finally did, Sean and I were in tears.”
“Luke is a gift to us,” Denise concludes. “He has taught me how to slow life down and see what is really important. I can be upset about something and then look up to receive a big smile from Luke. That makes me realize how simple life can be if we let it. Our hope is for Luke to recover from autism. With his strong-will and great potential, we are hopeful he will pursue his dreams and have the kind of life he deserves.”
Parents going through the same diagnosis as the Jansens should contact local family services to help find their way through the maze of therapies available to them.
The quotes for the article come from two interviews with the Jansens, one in October of 2007 and one in July of 2009.
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