My Child Has Been Diagnosed with Autism...Now What?
Parents need to become advocates for their ASD-diagnosed children and learn as much as possible about services that can help usher the child to adulthood.
The following is the second of three articles on ASD submitted by the Bucks County Autism Support Coalition in recognition of Autism Awareness Month.
When you are newly married and begin to plan a family, you hope and wish for the American dream. A perfect life, a perfect marriage and a perfect family.
Unfortunately, life does not always turn out the way you plan and you can experience a bump in the road. Learning that your child has been diagnosed with a developmental delay or autism is more than a bump in the road, your life has now become a rollercoaster ride.
Our son was diagnosed with a developmental delay at age 2. We always knew there was something “different” about him, but we still were in denial. Well-meaning family and friends kept telling us that he would “grow out of it,” since boys mature “slower” than girls. Although we wholeheartedly wished this to be true, we understood that we had to seek out a professional for an answer.
We took our son to professionals at St. Christopher’s Hospital for Children, who diagnosed our son with a developmental delay and mild form of autism. The diagnosis was initially very difficult to accept. Feelings of guilt, fear and uncertainty overwhelmed us. How did this happen? Why did this happen? Where could we get help? What did the future hold? Would our son ever be “normal”?
The staff members at St. Christopher’s Hospital were very helpful and accommodating in pointing us in the right direction. We learned that our son qualified for services through the state and that he could be enrolled in Early Intervention Services. The staff encouraged us to begin applying for services immediately, since this was the key to helping our son succeed.
Soon after our appointment, we applied for Medical Assistance and our son was deemed eligible and quickly approved. We then sought out our local “base service unit” and were assigned a case manager, who helped enroll our son in an early intervention center.
Once enrolled, our son did indeed begin to make strides with his development. He received occupational, speech pathology and special education services at this center in both individual and small group settings. It was a very positive experience and the services were instrumental in helping him to eventually enter learning support programs within our local school district. Our feelings of guilt and fear were beginning to change. We now had hope!
As parents, we learned to become advocates. We networked with other families, too, and learned all that we could on what services were available both privately and through the school district.
We also began to explore outside organizations that helped increase his socialization. Some of the social programs that our son participated in were: horseback riding, special needs bowling, baseball and soccer, karate, chess club, special needs CCD, a social skills club and a local church youth group.
We also utilized our medical assistance Access card (Keystone Mercy), which allowed him to receive additional speech and occupational therapy services privately at a local hospital. These services, together with what he received at the school district, were the keys to our son’s success.
Through our elementary school years, we worked diligently with our educators to ensure that our son continued to receive the appropriate services for his individual needs. As IEPs (individualized education plans) were being developed, we made sure that we too were involved with the planning process. Since parents are a part of the “education team,” our input is essential.
During the high school years, at age 18, we applied for SSI (supplemental security income) in preparation for our son to leave the school district. He was approved shortly thereafter. Next, we hired an attorney to develop a special needs trust for him for the future. To fund the trust, we purchased an additional life insurance policy reflecting the trust as the beneficary.
Before we left the school district, we advocated for our son to receive job training through our school district. Our son participated in three very positive work experiences and eventually he was offered a permanent part time position.
Since he felt comfortable and ready to enter the adult world, we contacted the Social Security Administration and utilized the “Ticket to Work” program. This program is available to individuals who have been approved for SSI and would like to utilize an outside agency to assist them with obtaining and maintaining jobs.
Job coaches are also available to individuals as well, however, for a limited time (approximately 3 months). The agency we chose provided a job coach for our son, who not only helped him, but gave education to his boss and co-workers about autistic individuals.
It has been four years since my son exited the school system and began his transition to adult life. When I look back at the beginning when he was first diagnosed, I am amazed at how far he has come. Our fear turned into hope. Our hope turned into pride. Our son met all of his goals. He was now accomplished and a success!
This article is just an overview of one family’s journey. I would like to leave you with the thought that there is hope for our children. The key however is to be an educated advocate. Utilize your resources. Be sure to network with both parents and professionals. Always remember to “raise the bar” and never give up!
Recently, our son came to us and began discussing some “new” social opportunities that he learned about from one of his friends. I happened to mention that I knew of the particular program already and suggested he try it. He then turned to me and said “Mom, you really do know a lot about these things. I don’t think I would be where I am now if you didn’t do all of this. Thanks for all you’ve done for me.”
I can honestly say, he wasn’t prompted to say this either! I was so touched by his statement. When my son left the room, I turned to my husband and said, “I believe our journey is now coming to an end.”
Mercedes Ignasiak is a parent of a 23 year old diagnosed with an ASD. She is a volunteer member of the BCASC Education Committee