FAQ about Autism

The kids and I were in the play place of a fast food restaurant the other day. I was sitting down while A and E played. There was another adult sitting in the play place as well and she was watching E. “How old is he?” she finally asked me. This is the seemingly non-complicated question that I get stumped on. The reason being, they are usually asking how old he is because they are confused by his behavior and his size. They usually think he is big for his age because he is acting younger than he looks. “Two and a half,” is what I replied. This is the point where I wonder if I should insert, “He has autism.” It’s not anybody’s business and I am under no pressure to share this information with strangers. But… they are usually asking because they notice something is different about his behavior. I don’t want pity so in the past I have often hesitated to bring it up. Lately though, I have been trying to bring it up more regularly. The reason for this is, I want to bring normalcy to autism. I don’t want it to be a taboo subject. I want the person to be aware. He is doing those things because he has autism and that’s okay. “He has autism” I finally tell the lady. “Oh really?” she replies. “That’s interesting because he looks so happy.” With this response I am immediately grateful that I chose to bring it up with her. I explain to her a little more about autism. I explain that children with autism are happy and are able to convey it. Maybe not in the traditional way that we expect, but they still are.
When I tell people that E has autism, I usually get several follow-up questions. I welcome these. I have a tough skin and there is not much you can say, short of directly insulting my son, on the subject of autism that will offend me. I welcome being able to educate people and help people learn more on the subject. When my husband told his boss about E’s situation, his boss replied that he had never met someone with autism and to be honest he didn’t really know what it was. I was shocked by this. I just figured everyone knew what autism was.

I have gathered a list of the answers to my five most frequently asked questions. My answers are not everyones answers. There is a famous saying people like to quote in the autism world. “If you’ve met one person with autism, you’ve met one person with autism” I am sharing the answers gained through my experiences with my son with autism.
Without further hesitation…

1. How did you know E had autism?
I get asked this all the time. I get asked this the most when the asker has concerns about their own child’s development. I think the hidden question is, should I have concerns about my child?
I was lucky enough to be around autism quite a bit with a prior job. I knew the warning signs. I also went to school for Early Childhood Education. I realized that E wasn’t as interactive as A was at his age. I realized that he could go days without acknowledging me. I noticed he wanted to communicate so bad but he didn’t seem to be able to do it. There are a lot of these symptoms that on their own are nothing to worry about. E had them all. Poor eye contact, speech regression, behavioral issues. My advice on this is, you have your mother or father sixth sense. If you feel there is something off, what’s the harm in getting your child tested or an opinion from a medical professional? We had to go through three screening processes which were quite time-consuming. Each one over an hour before we were even referred to the developmental pediatrician. They don’t diagnose autism easily. They are very thorough. Whatever the problem might be, through testing, they can identify your child’s delay and come up with a individualized plan to address it.

2. Have you tried [insert latest fad, diet, or behavior]?
When E was first diagnosed, I didn’t sleep. I spent every possible moment researching therapies and reading book after book. I wanted to do everything possible to help my son. There comes a time when you realize what you can realistically do out of all the information and services out there and what will work for your child. You can’t do every single thing and it’s not good for the child to be in therapy every waking moment either. It’s also not good for the parent to be only eating and breathing autism. I have tried certain things and will continue to try new things, but one step at a time. I guess, what I am trying to get at is, every single fad, diet, or behavior, I am very aware of. I probably have earned a PhD with all of the research I have done on autism. I know that people want to help. It’s human nature to want to fix things. Trust that we know what we are doing and we have one hundred percent heard of what you are suggesting. Even if you know somebody who had success with such behavior or therapy, every child is so different and what worked for them may not work for my child. Replacement questions that I personally love are, “How are you handling all of this? How are you doing? What’s keeping you awake at night worrying?” Autism moms want to sound off. I am not offended when people mention the previously mentioned things. I know they are being kind and it’s coming from a good place. It does however get tiresome explaining what I am doing with my child and if I have tried it and if I haven’t, why not.

3. Was it the vaccinations?
I don’t believe that vaccines cause autism. This is a hot topic so I will not elaborate much more. Two things. E did not have good eye contact or interaction at all as an infant. It did happen, but it was few and far between. He always seemed to just tolerate me. I thought I wasn’t being a good enough parent or that I was not bonding with him properly. These signs were noticeable from a young age, I just didn’t know they were connected to autism yet. Second thing. https://www.amazon.com/Autistic-Brain-Helping-Different-Succeed/dp/0544227735/ref=mt_paperback?_encoding=UTF8&me= This book talks in depth about what the autistic brain looks like.  It’s a very interesting read and I highly recommend it. The information in the book has strengthened my belief even more that autism is something you are born with.

4. This is not a question, but an observation I get often. “He doesn’t look like he has autism” or “It doesn’t look that bad”. This one really gets to me sometimes. Autism is not obvious at all times. If E is just playing at a park, you probably are not going to notice. Come to my house when I try to transition him from play time to another activity and the autism alarms will be going off at full decibel. A child with autism is not always hand flapping/stimming. To say it doesn’t look that bad minimizes things. Until you have walked in my shoes, you can’t say it’s not that bad. This goes for everyone. We don’t know what other people are going through. Supportive words are always the best whether or not you see the difficulty in that moment.

5. I thought kids with autism didn’t smile or like to be touched. Why is he so loving and touchy with you?
E is sensory seeking. Other children with autism may be sensory avoiding or some are like E and are seeking sensory stimulation. E does not seem to feel things as much as a typical child. He falls down and bleeds but doesn’t cry. I don’t realize he has an ear infection often for almost a month because he does not show that he is in pain. If I put a block down his shirt, he can’t feel it most of the time. He craves sensory input. Most often times from me or A. Children who are sensory avoiding may be overwhelmed by loud noises. They tend to hear and feel things even more than the typical child. They easily get overwhelmed by touch because they are feeling it so much more that it can hurt. E does not feel it enough. He likes to crash into things. He loves to swing. He loves to squish into me as hard as he can. He likes to flip upside down. This feels good. When he is having a meltdown, I put him in a tight hold and this calms him down quickly about fifty percent of the time.
E didn’t always smile. It used to be very hard to get a smile out of him. He is able to show his emotion a lot better than he used to. We are grateful for this. E may not react to the same kind of stimuli as W will with a smile. If I smile at E, he will return it maybe one out of four times. There are certain things that make E smile almost without a doubt. These are motion games. A will take E’s hand and they spin around and around and around and that makes him smile. E feels the most relaxed and happy when his sensory needs are being met. We get the most speech and smiles out of him when he is in his swing. His sensory needs being met make him feel safe and relaxed and because of this he is able to relax a bit and smile.

5. What is the hardest part?
The hardest part right now is feeling like I have an eternal one-year-old. E cannot walk on his own or he will run away. When I hold his hand in a parking lot he drops all his weight to the ground and refuses to walk. When I hold him he is constantly trying to get free. Pulling my hair, throwing my sunglasses, pulling at my face, whatever he can do to get me to let him down. He still puts things in his mouth, he runs straight to the street or the pond when we go outside to play. He resists getting into the car seat. Every time I put him in I have to man handle him. He still gets up in the middle of the night several times. I feel like when you have a baby, you think this is so hard, but it’s okay because you know they will get older and outgrow it. You mentally are prepared to handle it for x amount of time. With E, I don’t know how long this will last. It’s exhausting. I live in fear of him getting lost or hurt. He flails in tantrums and hurts himself. Self-harm is a problem with him and him harming me when he is angry. I feel tired all the time. I reassess my situation every few months and decide what help I need to add on. I am lucky to live in a state that has such amazing services that we can afford to add on help in the home. As hard as all that is, the smiles and the love and his sweet personality make it all worth it.

Challenges are not unique to me or to autism. Before I had E, I often felt at my breaking point with whatever life was handing me. A having tantrums, hard pregnancy, husband working late. Life is hard no matter what you are handed, and you adjust accordingly.  Viktor E. Frankl describes this better than I can in his book “Man’s Search For Meaning”

“To draw an analogy: a man’s suffering is similar to the behavior of a gas. If a certain quantity of gas is pumped into an empty chamber, it will fill the chamber completely and evenly, no matter how big the chamber. Thus suffering completely fills the human soul and conscious mind, no matter whether the suffering is great or little. Therefore the “size” of human suffering is absolutely relative.”

And with that I end. Please comment any questions you may have about autism or about your current challenges in your lives.

 

Adapting.

Change is hard for me. I am very dependent on my routine and a deviation from it can be quite difficult. I like to have my routine, my schedule, my bearings. When I go on vacation, I take certain things with me and set up as soon as I get to my destination. I take my pillow always. I have my necessities by my bed. My book, my reading lamp, my lotion, my charger, etc. These things help me to adapt better. I guess it’s like a kid taking their teddy bear along with them. It’s easier to cope if you have something special to you. My aversion to change is a control thing. I am a control freak. I like things a certain way.

I like the things that change brings, it is just hard initially to adapt.

Becoming a mom was like this for me. I didn’t want things to change drastically. I wanted to still be able to do the spontaneous, shallow things that brought me so much pleasure-Girls trips, getting my nails done, going to concerts, going shopping. I wasn’t sure how motherhood would change this. On Facebook I would see posts complaining from moms that they hadn’t showered for a week. They hadn’t done anything for themselves in months. They never slept. I didn’t want that. I wanted to retain my interests, my hygiene, my spontaneity, but I wanted to be a good mom too.

I am a very intense person. When I like something, I do it all the way. I find a shirt that I like and I buy it in every color. I find a book that I like and I do nothing else but read until it’s finished. Then I read every single book by that author. Sometimes I get so into something that I neglect everyone around me. I get obsessed with something and that is all that I can think about. I feel that I don’t have control over the level of intensity with my passions.

My biggest fear with motherhood was that I would get too sucked into my personal things and ignore my kids. I wanted to be myself and a good mom. I just didn’t know these two things could coexist from what I had seen. I couldn’t risk my intensity taking over and my future kids suffering because of it.

A was born. After the initial adjustment and shock wore off from learning how to be a mom, recovering from PPD, and readjusting my life to having a newborn, I  didn’t restart the things that I used to enjoy so much. Reading, Writing, Yoga, Sewing were all neglected. The rare time when I would start to do things for myself I felt like I was neglecting my baby. I felt like if A was awake then I needed to be 100 percent invested in her. At the time I didn’t realize I was doing this. I was handling things the only way I knew how- by intensely getting involved in one thing and neglecting everything else.

As time went on, I started to feel bored. And dull. I would go on a walks with A, go to the splash pad with her, go to different baby activities, the park. I still felt flat. And just a general discontent.

I googled “stay-at-home mom boredom.” Guess what? No responses. Seriously? I couldn’t be the only bored stay-at-home mom. The search responses that kind of matched it were ideas of things do to help my child not be bored. My child was an infant. She was definitely not bored. Subsequent searches gave me ideas on how to be an even better stay-at-home mom. The way to be an even better mom, it seemed, was to invest even more of myself into my child.

I remember walking into the living room one evening around this time. My husband was watching A. He was sitting in a chair, A propped up in his lap, and he was playing Call of Duty like nothing had changed. I realized that he was still exactly the same. He was a great dad but he still had his interests. How could I do this too? I lost my spark and I wanted to get it back.

I read a book. “Bringing up Bebe.” It is a book about an American’s experience living in France and the differences in parenting between the two cultures. As I read the book, I saw my own childhood in it. My parents still retained themselves while raising me and my sisters. I had an excellent childhood even though my parents had their own things going on. Some of my fondest memories are activities where I am helping my parents. Gardening, cooking, errands. I loved helping my parents with their routines and doing things together.

I started to try this with my own child. I started to do the things I normally would do, but with A. I cooked dinner while she was awake- not napping. I would, depending on her age at the time, incorporate her into it, or entertain her. I started taking a shower when she was awake. To achieve this, I put her in her crib with toys and books. I read books while she was playing with her toys. I started doing my everyday living, but with her. Having her help actually made it more enjoyable a lot of the time. Doing this, I surprisingly ended up having more time to play with her individually. I was happy because I was able to meet my own needs. And my being happy made me a better mom. I became more confident. I made more friends. I took her to the park. I thought up fun ideas to do. It was a chain effect. It kept building upon itself.

Finding myself again was not overnight. It was a gradual process. It was when A hit her 18 month mark that I felt like my core pieces had returned back.

Every day is not perfect. I still struggle at times to find a balance between myself and motherhood. Some days I am embarrassing amounts of lazy and ignore my children completely. Other times I am struggling to have one minute to myself. But overall, I feel like I have successfully navigated my way through the uncertainties of motherhood. I’ve made a safe place for myself and found joy in both my children’s and my own individualities.