Lonely moments

I recently read a blog entry by Flappiness Is. She has a 3 year old son on the spectrum and finally had an event that felt "normal". She could sit back and let other people watch her son without the stares or questions. She was with people who understood what she is going through with her son. When I read her blog, I felt like she was looking into my soul. She has an amazing gift with words. I wish she lived closer because I think we would hang out and be buddies. (you know, with all that time we both have..) I've been feeling extremely unorganized and overwhelmed with things lately. I feel alone even though I know I'm not. It's a desperate and isolating feeling. We are waiting for the school to complete an evaluation process with Alex. We have known for a couple years that something is going with Alex but we don't have a label for it. We want a label so we can understand him and help him succeed. When we are with other children, it is quite evident to me that Alex and Gabriel are not NT. For the record, I am unsure how much longer I'll be able to tolerate hearing, "he's just a 5 year old boy." No, no, he's not. I have some great people in my life here. Some who accept Gabriel for who he is. Why shouldn't they? Most of the time, he's a sweet, fun, and creative child. Yet I can tell that they don't understand. They speak to him like a NT child. They try to have convesations with him like they would another 7 year old and, well, he's not. I take Gabriel to as many events as I can. This past Thursday I took Gabriel to Gatorland on his first grade field trip. I was assigned to another child as well. We walked around with another mother and the two children she was assigned to and it was a nice day. As always, a couple things stood out during the day. Gabriel's best friend helped him unpack his lunch. His friend helps him every day. Gabriel rarely eats though because the cafeteria is too busy, smells too much, etc for him. The child is starving by 3:30! Gabriel squished his GF cookies into many pieces and ate his food contently. Another child made a comment that Gabriel is a gross eater. Poor Gabriel's face fell and he looked like he was going to cry. I was able to remedy the situation but it was at that moment that I remembered, my child isn't normal. He doesn't eat like other kids and other kids can be cruel. Even without those same issues, kids were cruel to me. I remember it well.

Gabriel has loved birds since he was little. The Gatorland birds were no exception. Later in the day, Gabriel's friends went into the little water park. Some of the kids had swim suits and some did not. We weren't planning on going in the water, so I didn't have a suit for Gabriel. He wanted a swimsuit and would not let the idea go. He couldn't. So off we went on an adventure to find a suit or shorts. Gatorland sells swim suits for girls and boys size 12. Gabriel wears a 7/8. I found a pair of teenage girls sleeping shorts and we made them work. What a waste of time and money yet it was the only way to make the situation work. He had a great time once we figured out the swim suit issue. We went to a birthday party for a 2 year old this weekend. The kids had a GREAT time. They raved about it and said that it was the best birthday party ever. My kids have attended a lot of cool parties so this is a big compliment from them.

Our friend went above and beyond the call of duty for our children. She knew which colors to give the kids in their goody bags. She got GF/CF cupcakes for Gabriel. She is amazing and we are grateful to have her in our lives. Throughout the two hour party, I wanted to tell people, "he has autism." I kept chalenging myself and decided not to say anything for the two hours. I don't know who our friend had told but I wanted to see if I could do it. This caused quite an internal struggle for me. Gabriel did well until the food was served. He hid under a table and could not get out to sit with the other kids. My internal struggle now switched to holding back tears. Thankfully no one looked at us funny or I would have been a sobbing mess. Our friend was wonderful - she kneeled down at Gabriel's level and offered him two GF/CF cupcakes. My heart swelled. It wasn't awkward, it was a beautiful moment between our son and our friend who cared enough to take the time to give him his treat. It's these moments that help the lonely feelings. I wish they happened more often but I am grateful for the moments that do come our way.

When Did You Know?

I often get asked "when did you know your son has autism?". This isn't a tough question for me to answer but it requires an entire background story because his official label/diagnosis wasn't received until he was 5 years old. He is now 7.
Gabriel developed normally and on track. He walked at 14 months. Though later than many of my friend's children, he was still within the realm of normal. It was right before his brother was born at 20 months that I started to notice differences between him and other children the same age.
I remember sitting at the computer with newborn Alex in my arms and shaking bcause I kept clicking on autism as an answer to Gabriel's behavior. Gabriel pushed the kitchen chairs and table over repeatedly. He didn't play with toys very long and needed constant attention. It seemed like he could cut off his head and wouldn't notice any pain.
Other people told me he was just a boy and to wait it out. He would catch up. This was especially comforting from other parents who have children with autism. Surely they must know. I called Andrew to the computer that night and cried. He cried but reassured me that Gabriel couldn't have autism. It didn't quite fit.
Remember, my background is in child psychology so I know enough to scare the crap out of myself but not enough to diagnose my children. I continued to have that nagging feeling so I contacted the local county program to evaluate him. I also contacted two therapists to evaluate him.
The final diagnosis was a speech delay and SPD - sensory processing disorder. Gabriel had just been diagnosed with a heart issue a few months prior which made everything seem overwhelming but it seemed MUCH better than an autism diagnosis. I would take it and run with it.
I took Gabriel to speech and occupational therapy several times a week in Miami. Therapists also came to the house and everyone reassured me that they didn't see any signs of autism. He would catch up and be a typical, normally developing boy.
When Gabriel was 3, we moved to Iowa and he entered the preschool program there. When he was 5, I took Gabriel to our pediatrician for his wellness check-up. He took his time observing Gabriel. He was patient with me. He was patient with Gabriel. I was oblivious. The pediatrician looked at me with concerned eyes and said, "we need to refer him for an evaluation."
What? What kind of evaluation? I broke down and sobbed. Here it was - exactly what I had feared for the last three years. But everyone, even professionals, had reassured me that I was wrong. Gabriel didn't have autism. That scary A word.
I called his occupational therapist and told her we would be making an appointment and asked her if she thought he had autism. She told me that it was possible. I sobbed.
The best advice she gave me - even with the label, he is the same boy. The same child who can get help from school and professionals if he gets that label.
It was at that moment that I KNEW he had autism. In my heart and in my gut, I knew we would hear it. I just prayed it wasn't so.
It's been two years since we heard "your son has PDD-NOS. It's on the autistic spectrum." I feel like I'm still grieving. Those six letters (funny how both words have 6 letters - PDDNOS and autism) have changed everything in my world. In our family. In our daily interactions. It's a cloud that follows us everywhere and it won't leave. I hope that when I think about this again in two years, it won't be as painful.

Autism Holiday Letter to Family and Friends

Dear Family and Friends:

I understand that we will be visiting each other for the holidays this year! Sometimes these visits can be very hard for me, but here is some information that might help our visit to be more successful. As you probably know, a hidden disability called autism, or what some people refer to as a Pervasive Developmental Disorder (PDD), challenges me. Autism/PDD is a neurodevelopment disorder, which makes it hard for me to understand the environment around me. I have barriers in my brain that you can't see, but which make it difficult for me to adapt to my surroundings.

Thanksgiving & Christmas are two of the roughest holidays for me. With large crowds and holiday shopping it can be very overwhelming, even a bit scary. When planning a party remember that with my over sensitive hearing and eye sight, Christmas trees and holiday smells can cause me mild to severe pain or discomfort. If the noises are impossible to control a personal stereo with headphones set to a safe level for children may help drown out background noise and ease my discomfort.

Sometimes I may seem rude and abrupt, but it is only that because I have to try so hard to understand people and at the same time, make myself understood. People with autism have different abilities: some may not speak, some write beautiful poetry, others are whizzes in math (Albert Einstein was thought to be autistic), or may have difficulty making friends. We are all different and need various degrees of support.

Sometimes when I am touched unexpectedly, it might feel painful and make me want to run away. I get easily frustrated too. Being with lots of other people is like standing next to a moving freight train and trying to decide how and when to jump aboard. I feel frightened and confused a lot of the time. This is why I need to have things the same as much as possible. Once I learn how things happen, I can get by OK. But if something, anything, changes, then I have to relearn the situation all over again! It is very hard.

When you try to talk to me, I often can't understand what you say because there is a lot of distraction around. I have to concentrate very hard to hear and understand one thing at a time. You might think I am ignoring you-I am not. Rather, I am hearing everything and not knowing what is most important to respond to.

Holidays are exceptionally hard because there are so many different people, places, and things going on that are out of my ordinary realm. This may be fun and adventurous for most people, but for me, it's very hard work and can be extremely stressful. I often have to get away from all the commotion to calm down. It would be great if you had a private place set up to where I could retreat.

If I cannot sit at the meal table, do not think I am misbehaving or that my parents have no control over me. Sitting in one place for even five minutes is often impossible for me. I feel so antsy and overwhelmed by all the smells, sounds, and people--I just have to get up and move about. Please don't hold up your meal for me--go on without me, and my parents will handle the situation the best way they know how.

Eating in general is hard for me. If you understand that autism is a sensory processing disorder, it's no wonder eating is a problem! Think of all the senses involved with eating. Sight, smell, taste, touch, AND all the complicated mechanics that are involved. Chewing and swallowing is something that a lot of people with autism have trouble with. I am not being picky-I literally cannot eat certain foods as my sensory system and/or oral motor coordination is impaired. Don't be disappointed if Mom hasn't dressed me in starch and bows. It's because she knows how much stiff and frilly clothes can drive me buggy! I have to feel comfortable in my clothes or I will just be miserable. When I go to someone else's house, I may appear bossy and controlling. In a sense, I am being controlling, because that is how I try to fit into the world around me (which is so hard to figure out!) Things have to be done in a way I am familiar with or else I might get confused and frustrated. It doesn't mean you have to change the way you are doing things--just please be patient with me, and understanding of how I have to cope. Mom and Dad have no control over how my autism makes me feel inside. People with autism often have little things that they do to help themselves feel more comfortable. The grown ups call it "self regulation," or "stimming'. I might rock, hum, flick my fingers, or any number of different things. I am not trying to be disruptive or weird. Again, I am doing what I have to do for my brain to adapt to your world. Sometimes I cannot stop myself from talking, singing, or doing an activity I enjoy. The grown-ups call this "perseverating" which is kind-a-like self- regulation or stimming. I do this only because I have found something to occupy myself that makes me feel comfortable. Perseverative behaviors are good to a certain degree because they help me calm down.

Please be respectful to my Mom and Dad if they let me "stim" for a while as they know me best and what helps to calm me. Remember that my Mom and Dad have to watch me much more closely than the average child. This is for my own safety, and preservation of your possessions. It hurts my parents' feelings to be criticized for being over protective, or condemned for not watching me close enough. They are human and have been given an assignment intended for saints. My parents are good people and need your support

Holidays are filled with sights, sounds, and smells. The average household is turned into a busy, frantic, festive place. Remember that this may be fun for you, but it's very hard work for me to conform. If I fall apart or act out in a way that you consider socially inappropriate, please remember that I don't possess the neurological system that is required to follow some social rules. I am a unique person--an interesting person. I will find my place at this celebration that is comfortable for us all, as long as you'll try to view the world through my eyes!



*Author, Viki Gayhardt