A Gentleman and a Rogue

Tuesday, April 24, 2012

April is Autism Awareness Month



April is Autism Awareness Mouth and I wanted to share my thoughts and impressions with you as I have a young son, Joe, who is challenged with sensory issues. My post will talk in generalities, but feel free to comment and elaborate on anything I mention.


According to recently released statistics, 1 in 88 children are diagnosed on the Autistic Spectrum and boys are more prone to have the disorder.


Autism is a complicated developmental disorder that appears during the 1st 3 years of life. Autism affects the normal development of speech and social skills. There are many physical symptoms. I believe there are 12 symptoms on the spectrum and 6 are required for a diagnoses on the spectrum. Also on the spectrum is Aspergers Syndrome (where speech develops normally) and PDD-NOS (Pervasive developmental disorder not otherwise specified) PDD-NOS is when the full set for Autism is not met.

Scientists haven't quite figured out how Autism affects the brain, but they believe there is a strong genetic basis for the disorder.


When do you, as a parent, know something is wrong?


Most parents suspect something is wrong by 18 months. I know I did. My son wasn't talking. His older brother said his first word clearly and distinctly at 14 months. I was still waiting for Joe to talk at 18 months. With a pediatric referral we went to local Regional Center. It's so important to go to your pediatrician when you first suspect something might be wrong because they can set you on the right path to get you the help you need.


Joe was evaluated and services began at 20 months. He had speech therapy, occupational therapy, and child development therapy until he was 3 and then our local school district took over.


I can't say enough good things about the early therapy Joe got. Within months he was talking. We identified his sensory issues and discovered his peanut allergy.


Children with autism generally have difficulties with pretend play, social interactions, and speech. They may also have sensory issues. Early intervention is so important because the brain is very pliable and easy to influence in learning new routines with therapies.



Parental Support

It wasn't easy for me, as a parent, to accept there might be something wrong with my son, but I knew I had to get him help. Joe is now five and mainstreamed in Kindergarten. He does not have an autistic diagnoses with our regional center, but he still struggles with sensory issues. Sometimes noises are too loud even when others are using a normal tone of voice. Sometime Joe needs more of the sensation to feel it. He needs to feel deep pressure hugs and do heavy work. He's been taking gymnastics class since he was 20 months. Just recently, he played AYSO soccer and flag football. He also takes hip hop dance lessons. His major struggles are mostly sensory, but he also needs help with fine motor skills.


It's so important as a parent to reach out to others for support. Other parents understand the hardship and challenges you face and may have a suggestion to help when you're drawing a blank.


A great movie to see is the HBO special on Temple Grandin who was played by Claire Danes. There are plenty of books on Autism and the spectrum. Actress Jenny McCarthy has written three books about her experiences with her son. (Louder than Words, Mother Warriors, Healing Autism Against All Odds, and Healing and Preventing Autism)


(I haven't read Jenny's books, but I do know as a celebrity, she's been vocal about her son's autism and it might be a good place to start if you, as a parent, have questions)

If you have a story, comments, questions, suggestions, feedback, anything you'd like to share, please do.

References: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002494/
http://en.wikipedia.org/wiki/Autism
http://www.autismspeaks.org/
http://en.wikipedia.org/wiki/Jenny_McCarthy

18 comments:

  1. Hi Steph, I commend you for seeking help for Joe right away. As I have recently discussed with my daughter, we all have challenges, just some folks have more identifiable challenges. Our role as parents is to help our loved ones cope and overcome, to the best of their abilities, their personal issues.

    Good topic, Maggie

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    1. Maggie, you sum up my philosophy beautifully, our role is help our children cope and to prepare them for life as an adult. It's not easy.

      Steph

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  2. Hi Steph, your post is coming at the right moment as I was talking with a friend about her grandson's Autism problems. You are a wonderful mother who knows when to help him and when to back up and let him try on his own.

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    1. Mona, that's good to hear. What is also challenging is that autism falls on a spectrum and some children are more effected than others. As a parent, you have to adjust for that. Also, patience is a big requirement I find.

      I also believe knowledge is power and I'll tell anyone about Joe's challenges and issues because I hope it will help inspire one to get help if they need to.

      Steph

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  3. Hi Steph,

    My youngest granddaugher was recently diagnosed with High Functioning Aspergers. She's 9. My daughter and her husband are getting wonderful help. Next year she will attend a school with a fully intigrated program and it's right in their town. Any suggestion you may have, or anyone in similar circumstances please feel free to contact me with input. The one problem I worry most about is her eating habits. She has a avery limited selection of foods she will eat. Is this something anyone else is familiar with?
    Thanks for putting this out there, Steph.

    Nancy

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    1. Nancy, it's great to hear that your granddaughter is getting the support she needs.

      Joe also has a very limited selection of foods that he will eat. Often I prepare a meal for me, my husband and Andrew, but Joe might need something else.

      Joe prefers his food bland or mild. No spice for him. He's not big on tomato sauces. He does like cheese and fruits including watermelon, apples, carrots, celery. He likes food with a crunch. Pretzels and honey nuts are some of his favorites.

      One thing I learned from the occupational therapist is that Joe's muscles in his jaw is "hypoactive." He needs more of the sensation to feel it. Mind you, he's fine with yogurt because I think it's sweet, but most of his menu is geared around foods with a crunch. With his sensory issues, GUM is a wonderful thing to give him to "Sate" his need to feel the chew. (I only wish I could use in it school.)

      Back on topic - The OT suggested when introducing a new food first letting him smell it. Then ask him to lick it. Don't push him or rush him. Once he's got a lick, then ask him to take a tiny bite. You'll know from his reaction then if it's a food he'll like or not. Mind you, this didn't work when Joe was was 3 or 4 because he wouldn't even lick it. Now that he's 5 1/2 and a bit more mature, he's willing to at least lick it.

      Also, talk about the food before you introduce it. For example, "Hey Joe, this is a hot dog. Andrew loves it. It's got a real bland taste. etc..."

      I hope you get a chance to try these techniques. If so, let me know if they were successful.

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    2. James, my 10 year old is on the ASD spectrum, he's got sensory issues as well. He does have peculiar food issues - though I wouldn't say they restrict him or make him eat differently than we do.

      For him its about colors - he can't eat orange and red foods together - they clash, won't eat some foods because they leave an after taste such as yogurt has to be flavored because he enjoys those, the texture is smooth and he likes it to.

      I found with him getting him to like a food isn't so much about taste as it is about sensing it. What does it smell like, feel like - of course not everyone understands but its not up to them.

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    3. Patricia, you make a great point in that it's not about taste with some kids, it is about how they sense it. With my son, Joe, first comes the smell, texture (the lick) and then the taste. Color is not a big deal for him. You have to try new ways to find out what works for the child. In that regard, that's why there's a spectrum because every child react in a different way to the challenge posed.

      Smiles
      Steph

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  4. Stephanie, I don't know anyone close to me that as Austism, but when my oldest neice was young, there was a young girl in her class that was Autistic. Nicole was and is always the type to be more sensative to those who have challenges. I think because she found that because things came easier to her, espcicially when it came to education, she tried to help those who didn't. I am so proud of her for her sensativity to those around her who need that extra special help and I hope that Joe and others can find such a person in their lives, besides those of thier parents, siblings and other family memebers..
    I applaud you for making sure that your son has the help that he needs and that there are so many more resources out there for you and your family to help him and you understand his condition...

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    1. Kathleen, it's so sweet to hear how Nicole was sensative to those with Austistic challenges.

      Joe has what I feel is sensory intregration dysfunction. This can present by itself. A great book that has helped me a lot is "Raising A Sensory Smart Child." It's really helped me to understand his sensory issues.

      In school he was breaking and chewing on his pencils and it was a bit unsettling to the teacher and other kids so I made him a "sensory tool box" and stuffed it with chewies for his pencils and regular chewies. I put a fidget in it as well. What's so heartwarming to see (because I volunteer in his class) is that his other classmates are very accepting and protective of Joe and his sensory tool box. They're quick to tell me that he needs his tool box and he keeps his chewies in there. It's very sweet. Most of classmates understand his sensory challenges to an extent and go out of their way to help him and it warms my heart to see kids his age calm him.

      Smiles
      Steph

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  5. Good post. I have several friends with autistic children and they are all boys. I never even thought of that before you pointed it out. I'm glad your son is doing so well. That's great that he likes all those activites, esp. the hip hop thing!

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    1. Jillian, girls can have it, but it tends to effect boys more. I'm curious if there isn't some X/Y gene play going on like there is with hemophilia. Just food for thought.

      Steph

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  6. Great post! We just made the transition from birth-to-3 to special needs preschool last month with our son. The more awareness the better!

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  7. Heather, that is wonderful to hear! I wish him the best. I agree - the more awareness the better. The early therapies really help, too. It's also important for parents to have support because the day to day dealings can wear one down.

    Steph

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  8. Hi Steph. I read somewhere that all males are to some degree autistic, somthing to do with needing to focus and not being distracted. It is very rare in women.
    I have a friend who teaches Aspergers Syndrome children and she was interested in my remark that Spanish people say exactly what they think and never tell those social 'white lies' that we English people tell all the time. Would they even be able to identify the syndrome in Spanish children? she wondered, since the main problem is trying to work out what people really mean. My daughter-in-law teaches Spanish children and she says you can still tell but they have an easier time here.
    Maybe we should all think about how we speak to children

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    1. Jenny, I agree we all need to think about how we speak to children. Very interesting the cultural differences you mention. I'd be curious to know how autism is looked at in other countries.

      Smiles
      Steph

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  9. My son was diagnosed with PDD-NOS last year, but has suffered with ADHD and Anxiety since he was a baby.

    This journey is something I never thought I would undertake. I have to say the post here was wonderful, filled with understanding, with compassion, and information something I'm sure we can all use. From experience, its not always the end result we get.

    Meltdowns are common around my house when James can't deal with an issue as he is right now. He has difficulty dealing with frustration, stress, anxiety, and his verbal abilities aren't always clear enough to communicate effectively.

    He takes a long time (18months with his current after school care provider)to warm to anyone and if he doesn't trust you or doesn't feel positive around you he stresses.

    Too often I've been told oh you need to discipline him...just the other day I spoke to a family member about getting on the wait list for a Behavioural Therapist because of his aggressive behavor - she said "just kick his butt" like that's going to help.

    Autism is not something to be feared or treated with revulsion - its something to be treated with dignity and respect. Regardless of where a child or adult is on the spectrum, they deserve to have that sense of indentity and be embraced by people who care.

    Its nice to read such posts as this one, Stephanie, because it reinforces the facts to me we as parents know what's best for our children and know when and how to give them all they need.

    Sorry about the long post, but well done. I've bookmarked your blog for this post and will be sharing it with other parents in my network :)

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    1. Patricia, thank you so much for sharing your story. My son, Joe, doesn't have ADHD, but I can imagine it poses it's own set of challenges. Yes, this is a journey I thought I'd never take, but I've had wonderful support.

      Joe's meltdowns are getting less, but I find that I have to be on top of meeting his sensory needs, especially with the heavy work. If I can give him the heavy work he needs before he school that gets his motor running just right.

      Those who say "just discipline him" just don't understand and it's frustrating to an extent. Discipline in that sense isn't what a child needs. Heck, I still have family members who think Joe is going to "out grow" his sensory issues. Again frustrating, because there's an element of denial there which does not offer me the support I need as a parent.

      Thank you again for visiting and sharing your story. I hope the post encourages those parents to seek out help, if they need to, and to let them know there are support networks out there which are invaluable to them as they struggle too.

      Smiles
      Steph

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