Tags
angst, asperger's, autism, label, \
Since birth, Patty has been a fighter.
The morning before Patty was born I woke up dreaming that she had died. I was frightened, but I made an effort to put it out of my mind. Subconsciously, I must have known something was wrong. That afternoon she was found to be breach. After I delivered her naturally, the neonatal team unwrapped the cord from around her neck and ran her down the hall to the neonatal intensive care unit. She had sucked in amniotic fluid and stopped breathing.
One of the nurses came back to the delivery suite and told us that she was a very, very sick baby, but she was also a fighter and that was a very good sign. She had torn out all the tubes they had put in, and they had to restrain her arms and legs. When they rolled my wheelchair into the NICU, her little hands and feet were tied to the sides of the bed. Traumatizing though it was, Patty was well enough to go home in three days with a monitor.
From the time we brought Patty home, she clung to me. I jokingly called her my little barnacle. Patty always knew when she was going to be dropped off at the church nursery or with a babysitter. Will and Mary would go to the church nursery with hardly a peep of protest. 10 feet from the nursery door, Patty would start screaming. She fought to stay with us.
When Patty was 18 months old, the special education specialists encouraged me to have her tested to see if she could benefit from special education services. Her older siblings, Mary and Will, had been placed in special education classrooms in the preceding six months. Patty met the criteria for special education due to speech impairment and slower than normal development. They wanted to place her in a classroom out of district, but I said that I could not manage the task of taking her to another place and also be available to take Mary and Will to their special ed classrooms in the district. So at 20 months, a speech therapist came to our house to provide early intervention for Patty.
Will was diagnosed with autism when he was seven years old, and Mary was diagnosed with PDD.NOS when she was nine.
Patty was diagnosed with “atypical” autism because she didn’t fit all the criteria for autism. The psychiatrist noted that she was very bubbly and friendly, but he gave her a diagnosis, in part because her sister and brother were on the spectrum.
In her later elementary years, she began to fight against the diagnosis. And I have hoped that she is right. She was in a learning disability classroom because she had a difficult time learning to read. She received speech therapy from an early age because her speech was very difficult to understand. And she benefited from programs that were available to children with autism and other disabilities. Because of her diagnosis, she was able to develop a relationship with Fred, an Arabian horse at the therapeutic riding program. And without the diagnosis, she would not have been able to have one-on-one swimming lessons.
However, after she learned to read, she began to resent being pulled out of the classroom to meet with the speech therapist and social worker. She said they were treating her like she was stupid. She was not autistic like her brother and sister, she said angrily. I had to agree that there was something else going on. She was able to lie from an early age. Will and Mary never told me a lie until well into their teens. Even then, the effectiveness of their lies were laughable. Patty learned to tie her shoes, bounce a basketball, and write at a much earlier age than Will and Mary. She enjoyed reading the comics.
When Patty entered middle school, she noticed the clothes that other students were wearing, and wanted to have the same clothes. Will and Mary did not really notice or care what their peers were wearing. Patty wanted to fit in and was aware of peer pressure. She fought against being pulled out of middle school classes because she said, I’m not disabled. I’m smart. And she was, but she fought against the services in a very unpleasant way. Because of that, she was not allowed in gifted programs. Her brother, Will, was identified as gifted in fifth grade. But Patty had to fight to get into those programs, despite the highest test scores in her all of her classes for several years running.
In high school, Patty made the sessions with her speech therapist so miserable, that we opted to end speech therapy. She was still the on the social worker’s caseload, but she would walk right past the office without responding to the social worker’s greeting. Patty wanted to be free of the label of autism. She said that she only had the diagnosis of autism because she had grown up with an autistic brother and sister. It was environmental, she said.
When Mary and Will went to college, they both made use of Disability Services. Mary graduated in five years and Will graduated Magna Cum Laude in four years. Patty has refused any help in college, and is on the Dean’s list every semester. With no help.
Patty has a love-hate relationship with autism. On the one hand, she doesn’t want to be identified as a person with autism. On the other hand, she loves her autistic siblings and staunchly defends them, and anyone else who she senses has autism. She was so worried about Will when he moved away that she had headaches for weeks last summer.
You have an amazing story, very inspiring. Your kids are lucky to have you!
Thank you. And I am blessed to have them as well.
Your voice is loud and clear. You know the ‘deal’ all too well. I’ll be back for more.
Patty took Arabic her first year of college. She said that she learned a more about pronunciation than she did in speech therapy, and it was a lot more fun. I wonder if speech therapists could use teaching a language to make speech therapy more palatable to resistant students.
Patty was obviously smarter than they were when they didn’t let her in the gifted program. It is sometimes very difficult for people who put labels on others to see clear. For the little amount of time I spent teaching in the last few years, I found that the “smarter” you treat kids or teens the better they perform. What an amazing little fighter! You must be so proud of her!
I think those in charge of the gifted program in middle school wanted to be comfortable, not challenged. Patty marches to a different drummer….It’s more appreciated in college, I think.
Wow that is an amazing story! It just goes to show that one label does not fit all. You should be incredibly proud – it sounds like your children are thriving and succeeding in life. Thanks for sharing this story.
They have come a long way. Thank you.
Very interesting. My 6 year old son has a diagnosis or ADHD and gets pulled out of class for OT but I often wonder if his diagnosis is correct or valid. I think it’s good that he’s getting services because he does need them but I also often feel that he is being unfairly labeled. I’m curious to see how he feels about it and what he has to say about it as he gets older.
Patty also needed services, so the label served her well, even though she didn’t like it. She was below the 1st percentile in speech impairment for a while. She did have trouble learning to read. This is a reading household. The label was helpful, even if she didn’t want to admit that. I choose to think of it as a method of both protecting my child from unfair treatment at school and getting them the services they needed. When she was older, she chose to throw the label off. I don’t think she would have done as well as she has without the early intervention and services she received. That is from my perspective, not hers.
To label or not– we’re struggling with this also at not-quite-three years old. It feels almost like a violation of rights to make this decision for him before he’s able to voice an opinion, but how else can we get him help we think he needs? It’s reassuring to see that Patty has been true to herself– despite all labels. Thanks for sharing your story.
I think that when our kids are young, we are responsible for helping them get what they need. They are minors, and we are responsible for them, so if the label is going to get them what they need, then think of it as a tool, one of the many strategies that we use. Later, when they are older, they can decide if the label is helpful or not.
I understand the love/hate relationship with autism: hate the disorder, love the person. I haven’t been diagnosed with anything. My youngest brother is autistic. There certainly is an environmental effect of autism on family members.
I have a hard time with diagnosed labels. In some cases they help by focusing attention in the right areas as far as support services or therapy. But in other cases they cripple a person and limit their abilities. Especially when talking about autism, something that has such a wide range of diagnostic criteria that you have two entirely different children being labeled the same way. I wish they would eliminate the spectrum and address each of the underlying diagnoses as separate.
I don’t know if the recent changes grouping all forms of autism under one label is going to hurt or help. I do know that when my children were in school, the autism label made it easier for us to access services. Parents of children with the Asperger’s diagnosis had to fight tooth and nail for accommodations and services. That has changed quite a bit in the ensuing years. Perhaps Patty would have been better off with a more diffuse diagnosis – such as learning disabled with speech impairment and/or ADHD. Whether she is ready to accept it or not, she did benefit from the interventions. On the other hand, there was probably some detriment as well.
This story is inspiring. Patty, Will, and Mary seem like really wonderful children.
Very touching story. A mother’s instinct is amazing isn’t it. Thank you for sharing a part of your family’s life.
Thank you. I think Moms could trust their intuition, their “knowing” more.
Fantastic story! Always trust your intuition; your best guide. I am so happy you post your story for others to read. An inspiration in trust and fortitude…and love!
Moms sometimes have to wait patiently. Who knows what will happen.
Very heart felt and touching. What memories with your kids. I am so honored to have you as a blog follower.