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I just read an article this morning about a mother who was very distressed, angry, and saddened by the fact that her 7 year old child on the Autism Spectrum was not invited to a birthday party. He was the only child in the whole neighborhood that was not invited, even though they all played together in the same neighborhood playgroup.
As I read it, my heart bled. I am sure that we can all feel this pain. The social/emotional gap between typical children and those on the autism spectrum is wide indeed. A doctor once told me that children are the best diagnosticians in the world, and when you watch a group of them, the odd child will always stand out alone.
So we cry, feel sorry for ourselves and for our child, and become indignant with a “soap box” reaction, feeling that we must go on a mission to educate those ignorant of social disabilities. These are all normal reactions of course, however, after all these negative feelings have passed, what can we do in the here and now for our child in a practical sense?
I was very impressed by the helpful answer to this predicament. The answer was to be proactive in this situation by being prepared with other plans. For instance: The suggestion was made to have plans ready BEFORE the party, simply inviting the child that is having the party to a private celebration, such as going to a favorite restaurant that both would have fun at and having plenty of parental supervision. A “one on one” type playgroup instead of a large group where our child will surely stand out. This great idea not only protects the child’s dignity and self esteem but it also gives an opportunity for education by assimilation, giving the other child and parent an occasion to broaden a greater understanding of Autism Spectrum and the social/emotional challenges that are a huge part of this disorder.
We may feel that we should not have to go to these lengths and that people should be more open minded, educated, and considerate. The fact is, yes, they should be and this would be wonderful if these attitudes were prevalent. However, this is not the case and we are our child’s parent. We accepted that parental role with the true honor of “protector” of our child. In order to be accomplished in our honorary title, we must make extraordinary efforts to protect the physical, mental, and emotional wellbeing of our child. This is not a simple task either, especially protecting our child’s emotional wellbeing. Keep in mind though, if we do not protect their self esteem and dignity…No one else will!
Let’s arm ourselves my fellow parents with a positive and defensive wall of protection for our kids. Thus, by so doing, we rise above the negative and dwell on a positive direction of promoting awareness. Just remember the old saying, “More flies are gathered by honey than with vinegar” and no one wants to listen to us if our words are sour. It may take more work and effort on our part, but our children are definitely worth it!
Kimberly Larochelle
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We’ve all experienced it…and quite a few times actually…every time we are with or around “typical children”. It may be at the mall, or at a playground…and all of a sudden our child does something, whether it be hollering, flapping or spinning…we don’t notice right away, because we are accustomed to being around these little stims at home. It takes a couple of seconds, and by the time, we notice…we’ve also noticed something else…Yes…from other parents and other children…it’s the “sideways glance”. It’s penetrating, and brutal, and it is virtually overwhelming when the “sideways glance” is coupled with a few hushed whispers from one typical mom to the next. We can’t blame them…but we do! They think they are being discreet…but they are not! Some, may even give us a patronizing look of sympathy, and feel that it may make us feel better…But…it doesn’t!
So, what do we do? How do we feel? We all know how we SHOULD feel…the noble attitude of, “This is my child, and yes, he is autistic…this is just fine, and I love him and I accept him as he is in all environments…and I am not embarrassed or ashamed…so there…” and we hold our head high with dignity. This is our façade…this is our mask. Although there are a few of us that have been able to achieve the inner strength to muster up this same resolve and confidence in their hearts as well…most of us….well, deep inside us…our hearts are breaking!
Those sideways glances, whispers, and patronizing looks…they hurt, and yes…badly…like the stabs of a knife into our hearts. We think to ourselves, “I shouldn’t let this bother me.” And “I don’t even care what other people think.” But…it does bother us, and it does embarrass us. We may ask ourselves, “Why does this bother me…Why don’t I just “get over” myself…
The answer is just as simple, and as natural as a heartbeat…We are HUMAN! And, as human beings, we care about what others think of us, and we long to be accepted…it is in our job description as people. People conform to social graces, and standards, and this makes us all feel comfortable, and secure. As a society of people, we have come a long way too…Just look at us…we have disabilities all around us and we don’t even flinch anymore, at someone in a wheelchair, or a blind or deaf person. But…when it comes to a “social disability” as in the autism spectrum….well that is a real jagged pill. Because of our set standards of behavior, these social disabilities make people uncomfortable, and they are at a loss as to how to react.
So, what is the answer…education, exposure…Yes, and yes, these are big parts of the puzzle that is “Acceptance” and “Awareness”.
This April, lets all promote Autism Awareness as never before, since April is the dedicated month of International Autism Awareness and therein afterwards, month after month, year after year, day after day. As there is more and more Autism Awareness…less and less become the occasions when we have to endure “The Sideways Glance”.
Kimberly Larochelle
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Warriors for Autism are a non-profit organization dedicated to promoting Autism awareness. This foundation raises funds to help create programs such as sponsoring therapies, organizing family field trips, support groups, and sensory-friendly play dates for children and families of Autism Spectrum.
The goal of Deena Rivera, founder of Warriors for Autism is not only to raise awareness about Autism, but also to generate a desperate need for funding, in order to sponsor families who do not otherwise have access to vital therapies and much needed assistance in the Tampa Bay area.
This Saturday, 4/23rd, Deena Rivera and her Warriors for Autism are hosting the following event and I thought many would be interesting in attending especially in this month of April, since it honors International Autism Month.
Here is the information to the event:
1st Annual Tampa Bay Joins Hands for Autism
Cocktails & Silent Auction Benefit
Saturday, April 23, 2011 from 6:30pm – 10:30pm
A fun evening event for Tampa ’s Warriors to come together, to dine, dance and show support for the fight against difficulties our autistic children face everyday. Proceeds from this event will be dedicated towards creating safe and affordable summer programs for children with autism spectrum disorders.
For further information contact:
Deena@warriorsforautism.com / 813-857-1698
www.warriorsforautism.org
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I have a tattered little piece of paper that decorates my fridge, and it’s nothing fancy…really quite worn…but on it is written some of the best advice that I have ever given myself. It is called “10 Helpful Hints”. The reason I keep it on my “fridge” is so that I may FOLLOW this advice that I have given to myself…And…I am reminded everyday, several times a day, every time I open the fridge…”Follow Your Own Advice”…
It seems that the closer I follow these 10 little tips…Life flows a little easier, and the world seems a little brighter. The more I read them and keep these tips foremost in my mind…I seem to be able to muster up more Hope in my heart, along with Courage and Strength.
I have found that in our Autism Spectrum Community, the struggle can be quite hard, and it can take a toll, physically, mentally, and emotionally. If we can muster up though, and be strong enough one day, while our fellow may be lacking on that very same day…then…we can pass along a “shoulder to lean on”…and maybe someone will provide a “shoulder” for us, on another day…when we may be stumbling… The point is, we are all on the same “crooked road”…and just as I have been up built by this tattered little slip of paper…I will pass it along…in the hopes that it may give someone else a boost.
- Never give up on a cure.
- Read, read, and read some more everything on the subject…then keep what’s good, and discard what’s not…and keep a “not sure” file as well.
- Listen to your “Gut”…there is no one on this earth that loves this child as you do…or that knows this child better that you do…so “Arm” yourself with your own wisdom of your child, and become his or her best Advocate.
- If a therapist, doctor, teacher, etc…does not connect with your child…Find someone that does.
- If a therapy or diet is not having successful results…stop…and find something that will bring success.
- Ask questions…lots of questions…and write them down, so that you can carry them with you when you go to your child’s doctors, therapists, etc…and if your questions are met with distain, sarcasm, or with a patronizing response…Find someone that will answer your questions with respect and dignity.
- When you feel like the world is caving in on you…take a Bubble Bath, a Long Walk…or anything to help you re-group to face the challenge again.
- Try to stay healthy yourself…this is hard as you may feel selfish about giving yourself any attention…so…just remember who you need to be healthy for…Your child… and they are depending on you…You cannot assist them very well if you get sick…
- Join a Support Group…and not just any support group. Make sure that you will be able to gather “purposeful” support from this group…and that it truly satisfies your need of support in both a practical, and in an emotional sense. Ask yourself, “What was I able to take away from this meeting?” Any tips or information, and maybe even play dates for my child, etc…not just a “Gripe Session”.
- Do not feel guilty that your child is in this situation, and do not plague yourself with the “What if’s” or the “If only I knew then what I know now”…and Do not look back with regret…just keep moving forward to Accomplishment!
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On FridayDecember 17th,2010 we will be hosting a FREE holiday party for Kids on the Autism Spectrum and their families only at Gator Fred’s. The event will occur from 6-8 pm and will feature a Sensory Friendly Santa as well as FREE open play for the kids. You may take your picture with Santa or just enjoy the evening. Families will be given a number relating to their turn with Santa ( like when you are buying deli meats at the grocery store) and therefore no one has to wait in line. Your child can play until it is their turn and their number is called. We are working on having presents for the kids and there will be raffle type giveaways. The entire event is FREE and is sponsored by Dr Nelson Mane http://www.manecenter.com/, Mane HIT Support Squad http://www.meetup.com/Mane-H-I-T-Autism-Support-Squad/ and Gator Fred’s http://www.gatorfreds.com/ PLEASE TELL YOUR FRIENDS AND HELP GET THE WORD OUT.
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I got wind of a great holiday event for families with children on the autism spectrum especially those with sensory issues. On December 5th, 2010 West Shore Plaza in Tampa Florida will be having a holiday photo event with Santa. The event is on this Sunday and will be held from 8am to 10am. The lights will be turned down and the area will be “quiet.” Families will recieve a Santa photo and a give away. I am always looking for opportunities to share with you all that will allow you to get the most out of the precious childhood years. Please spread this around to anyone that you think would enjoy this event. For more information contact Kristy Genna at Westshore Plaza KGenna@glimcher.com
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A subject that is not often covered, that should be addressed and needs to have more attention brought to it is the subject of autism spectrum disorders and bullying. Bullying is a problem for all children but the incidence seems to be higher for those on the autism spectrum. This most definitely is a subject that requires greater awareness especially with regards to those not familiar with life on the autism spectrum. I found this article and the link is below that addresses some basic tips for those confronted with this issue.
http://www.kiowacountysignal.com/lifestyle/family/x1129168571/Family-Time-How-to-protect-children-with-autism-from-bullying
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This is from Sandy Waters and The Autism Perspective ( TAP ) magazine.
Here is a great example of a “Religious Exemption” to give to your school district, and not get your child vaccinated!! Hope this helps!!
To Whom It May Concern;
My/Our child’s body is the temple of God.
My/Our family’s personal religious beliefs prohibit the injection of foreign
substances into our bodies. To inject into my/our child any substance which
would alter her/his state into which he/she was born would be to criticize
our Lord and question His divine omnipotence. My/Our faith will not allow us
to question our Lord and God nor to challenge His divine power.
My/Our objection is based on my/our lifelong, deeply-held religious beliefs.
The vaccination of my/our child violates laws put forth within us by a
higher force at the time of conception.
My/Our personal religious beliefs include my/our obedience to God’s law, the
Ten Commandments, and I/we believe that I/we am/are responsible before God
for the life and safety of my/our child, created by God.
Respectfully Submitted
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I had the pleasure attending another event put on by “Surfers For Autism” this weekend at Daytona Beach, Florida. This is just a great event and organization that anyone with a child anywhere on the spectrum should consider attending. I am sure that they are looking for volunteers not only for helping the children learn to surf but also with administrative issues. They do a great job with children of all levels of function and skill regarding to surfing. The event is totally free. They provide food and snacks. They negotiated an excellent rate on the event hotel. All in all, if you live anywhere near one of these events or perhaps can plan a weekend trip around one of these events I think that most children on the spectrum would benefit from this experience. As the founder of the Hitautism support group www.hitautism.net , I can tell you that I am behind this event and that our members truly enjoyed participating. Here is the link to their website. I would suggest that you check it out if not for the last event that they have this summer, then for the coming summer. Http://www.surfersforautism.org/index.html
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I recieved this email from Autism Speaks and thought I would pass it along.
| You are receiving this notice because your member of Congress has not yet cosponsored the ABLE Act. With your calls and emails today, they might!
The Achieving a Better Life Experience (ABLE) Accounts Act of 2009 – or Achieving a Better Life Experience Act – was introduced on February 26, 2009 in the House of Representatives as H.R. 1205 by Congressman Ander Crenshaw (FL). The bill is designed to encourage individuals with disabilities, including autism, and their families to save for disability-related expenses as well as supplement rather than to replace benefits provided by other sources (including Medicaid and private insurance). The bill authorizes “ABLE Accounts,” which are similar to existing 529 college savings plans and provided certain rules are met, these accounts will be exempt from federal taxation.
The bill has garnered significant support on the House Bill especially with 197 Cosponsors. We have set a goal to add 30 Cosponsors in 30 Days and potentially get this bill passed into law before the end of this Congressional Session!
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| Here is How YOU Can Help: |
1) CALL YOUR FEDERAL HOUSE REPRESENTATIVE! Calls are very important. In this day of electronic communication, we have found that offices are more responsive when they receive calls from constituents.
> You can find your Federal House Representative’s contact information HERE.
> Ask to speak with the Health Legislative Assistant for that office and if you aren’t sure of what to say, say this: “Hi. My name is (NAME). I live in (City, State) and (Representative’s Name) is my Congressman/woman. I am calling today to ask them to cosponsor H.R. 1205, the ABLE Accounts Act. This is a very important bill for me and my family. Our child with autism/loved one with autism, will need care well into adulthood. This allows us a way to provide for our child/that child in the future. Thank you so much.”
2) AFTER YOU MAKE THE CALL, FOLLOW UP WITH AN EMAIL HERE. You can follow up with an email with more information about why you want your Representative to cosponsor this important piece of legislation.
3) ASK TEN PEOPLE TO REGISTER AT AUTISM VOTES AND HELP YOU! This is a quick easy way for people to help you and your family. They can register here. Finding 10 people to help you is easy and magnifies your voice! Ask grandparents, aunts, uncles, neighbors, coworkers, friends and therapists to help you help save for your child’s future.
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You can read more about the ABLE Accounts Act of 2009 here. Thank you so much for your participation
