Annie's Story
This is the story of Annie. Annie is 8 years old and is autistic. When I was asked to write this story, I thought “Oh my god, where do I begin.”
The last eight years seem to be a blur. We have two daughters and they were born ten months apart. My first pregnancy (with Ellen) was a c-section, so when I learned that I was pregnant with Annie, I decided to have a scheduled C-section. My pregnancy with Annie was uneventful and normal.
While Annie was in the hospital nursery, one of her nurses thought she had detected an abnormal heart beat. A pediatric cardiologist was called in, but found that everything was normal. Annie was also jaundiced and had a large strawberry birthmark on her abdomen.
At this time,
she was given the Hepatitis B vaccine. I remember the nurse coming in and
asking me if was O.K., and telling me that this was a normal procedure. I
remembered being in the same situation with my older child 10 months earlier.
I had chosen to wait for Ellen to get her vaccine. But this time I told the
nurse to go ahead. I now regret that decision. One thing is clear: When you
take your child to the pediatrician to be vaccinated, they require that the
child be healthy. Can you determine that a two-day old child has a healthy
immune system? No, you can’t! Therefore, you should not vaccinate newborns.
Annie was diagnosed with several ear infections in her first two years of
life. She was treated with regimens of antibiotics. I now regret this also.
I feel that the medical care she was given at our employer-sponsored medical
facility was inadequate. The doctors were not experienced in treating young
children. At one point, Ann was on two different antibiotics for weeks. I
now know that this was the worst thing for her. It was during this time that
Ann became very ill. She developed a severe case of thrush and became dehydrated.
This was during a holiday weekend. The following Monday she was admitted to
the hospital. She had a severe herpes infection in her mouth and down her
throat. Annie was a mess!
It was at that time, when Annie was two and a half, that we decided to have her evaluated. The diagnosis of autism was devastating. I could not believe it. This was a child who at one point was playing patty cake, saying mama, and waving bye-bye to her aunt. We immediately placed her in an early intervention program with First Steps. Although this was helpful, I had the nagging feeling that there had to be more we could do for her.
When Ann turned three, she became eligible for school services. Through this long and difficult process, I have learned many things, but the most important thing I’ve learned is how little the school system knows about autism. They’ll tell you they have an “autism team.” Does that mean that someone has some sort of degree in autism? No! Does it mean that they receive constant, ongoing education in the latest treatment methods for autism? No! Does it mean that you have to be specially educated in any way to teach a child with autism? No!
The bottom line is that all autistic children are different. They cannot be educated with a cookie-cutter teaching plan. The term used is Individualized Education Plan (IEP), but it’s never truly individualized. While Ann was in special education, we called several case conferences to discuss her progress. Her goals always remained the same because she never mastered any of them. But how could she, in a class with eight other disabled children? She needed constant one-on-one interaction. It was during this time that we began seeking out other options.
I have a
cousin who at that time was working for the Wisconsin Early Autism Project
(WEAP). Talk about fate! I started investigating WEAP’s credentials
and asked if they consulted with families out of state. Then a situation occurred
that convinced us that we had to make a change. One day I arrived early at
Annie’s school to pick her up. What I found broke my heart. Annie was
sitting at a table with her teacher and aides around her. She was belted into
a Rifton chair. A Rifton chair is used to secure orthopedically impaired children.
Believe me, Ann is anything but orthopedically impaired! She is exhausting
with her energy level and I’m sure they wanted to restrain her so that
they didn’t have to chase her around, but that was the straw that broke
the camels back. I know that they viewed this situation as no big deal, but
it was completely devastating to me. I thought, “My child deserves better
than this.” If I restrained Ann every time I was too tired to deal with
her, I’d be put in jail!
After this incident, we enrolled Ann in a YMCA pre-school program, contracted
with WEAP and hired our first private therapist, Caroline. She was actually
Annie’s first teacher at the special education co-op. Caroline was a
blessing sent straight from God. I think she loves Ann as much as I do. She
no longer works for us but is still in contact and requests updates on Ann’s
progress. If anything good came out of the public school experience, it was
Caroline!
After contracting with WEAP, we saw definite improvements. Most importantly, we found that Ann was learning and that she could be taught. Although we were initially happy with WEAP, we were still keeping in touch with the world of autism and the newest treatment innovations. A good friend told us about Verbal Behavior and Dr. Vince Carbone. After attending Vince’s seminars, we decided to switch to a Verbal Behavior home program. The tools for teaching were the same but the substance was clearly different, with a strong emphasis on communication (and we know that communication is key for our children). We continue to run a home Verbal Behavior program for Annie. We have been very blessed through the years to have wonderful, caring people working with Ann in our home.
We have been strong advocates for Annie. We have always sought out the best for her and demanded more for her. This group (Northwest Indiana Families for Effective Autism Treatment), was started out of the belief that there has to be more we can do for our autistic children. We have all learned a great deal in our individual searches and as a group we want to help other parents. Maybe the road won’t be as difficult for you as it was for us. Thankfully, through our despair we found each other and as a group we have positively impacted the autism community in Indiana. I truly believe that this group was instrumental in the passing of legislation regarding autism treatment, waiver slots and the newly established Support Services Waiver. Remember that it is imperative to contact your legislators and to be involved in the legislative process, because the decisions they make will affect your child.
We are still searching, and I think we will always be searching, for more. Annie is a happy, healthy little girl with autism. She is very loving and very smart. She always has a smile on her face.
I challenge all parents of children with autism to demand the best for your children and to go with your gut instincts. I never gave much credence to the gluten-and-casein-free (GFCF) diet until I decided to try it. But through this dietary intervention and supplements, Ann has become a very healthy child. Ann catches an occasional cold but gets over it on her own. This tells me that her immune system is now working as it should. Ann was hospitalized several times as a young child. She would get sick and her immune system would just shut down. She wasn’t able to fight off the common cold. But now she’s healthier than her sister Ellen.
If you are a parent of a newly diagnosed child, here are the things I’d like to tell you:
• First, seek out professionals who are well-trained and who have the best interests of your child at heart. They are hard to find, but you can meet with other parents who share your goals and attitudes and consider their recommendations. Attend support group and ASA meetings. Some people will tell you that these are just groups of parents meeting to complain about the school system. Well, that may be a large part of it. But go anyway and weed out the information you need.
• Don’t
say no to something just because there are no “double-blind, placebo-controlled,
peer-reviewed studies” to support it. We don’t have time to wait
for the studies. Autism is an epidemic yet it receives the least amount of
federal research funding. Do your own research and gather your own evidence.
Again, talk to other parents.
• Get over the initial diagnosis and get over it fast. Time is wasting
and it is the most valuable commodity you have. Listen to parents who have
been there. This is no rose garden. We may sometimes sound like we're ranting
and raving, but see beyond this. Take the knowledge that other parents have
accumulated and use it. Use it now! Don’t waste precious time thinking
“It’s too expensive,” “It’s too hard,”
or “Maybe I should just wait a while.” Just jump right in and
do it!
• Ask questions. Do not allow your child to be the guinea pig for pharmaceutical companies and their latest, must-have vaccines. My daughter was given the Hepatitis B vaccine at birth and I will never forgive myself for allowing her to be a guinea pig simply because I trusted the medical establishment.
We are all searching for information and we are all searching for the same reason—our children need us! Listen to each other, listen to your gut and listen to your child.
Good Luck!
Karen & John, Annie’s parents