Having your child diagnosed with autism, or any other disability, sets you apart as a parent. You're thrown into a whole new life that other parents, while well-meaning, loving, and sympathetic, can't fully understand because they aren't living it. We've been very open about what life is like and how we've come to this point with Bug, but I can't share everything I'd like people to know about our family in a casual conversation.
I know every mom and dad to a child with autism sees things differently, but I wanted to share a few of the things I wish I could tell every other parent I know about us and our unique experience with autism (so far).
1. Ask me questions! We've been open about Bug's diagnosis for a reason. We want the people who know him and see him to understand what makes him different. We may not have answers for every question about autism, but we are certainly the experts on Bug.
2. Every child on the autism spectrum is different. Autism is a spectrum disorder, which means that people diagnosed with it have a wide variety of severity and symptoms. You may know other children or adults with autism, but that doesn't mean they will have the same difficulties and strengths as Bug.
3. We don't care what caused Bug's autism. There are so many different theories about where autism comes from that it's hard to keep track of them all! As far as Bug goes, we accept that he has autism, we aren't going to worry about anything we might have been able to do in the past to prevent it, and we are enjoying being Bug's parents - autism and all.
4. Autism isn't something Bug will "grow out" of. Put simply, autism is part of Bug's wiring, and that wiring doesn't change. As he gets older, some of his difficulties won't be so obvious and he'll be able to self-regulate, but autism will always be a part of who he is and will always make certain things difficult for him.
5. Please don't use the "R-word". I started out writing my explanation here as a wordy one, but I'll just say that every time I hear someone use "retard" or "retarded" as an insult, it makes my stomach turn. It's sad to me that people would use my son's - or any other person's - special needs as an insult, joke, means of ridicule, or something to be ashamed of. You can read more on this here.
6. Try not to judge other parents you see each day. You never know what they may be going through. Sure, they may not seem to be doing a wonderful job, but they are likely to be doing the best they can. A kid who looks like he's just being stubborn in the middle of the IKEA exit might actually be in the midst of a full-blown autism meltdown (ask me how I know). So, like some wonderful IKEA shoppers I saw once, simply try not to stare and don't make any comments, or if you want to help, gently say something along the lines of "Is there something I can do for you?" and go back to your day if the answer is no.
Adventures in autism with the sweetest child ever.
3.14.2014
SB 57 - Part 4
Today is a great day.
I'm pleased to write that SB 57 has been signed by both the Speaker of the House and the Senate President, and now awaits signature by Gov. Herbert!
In order for the bill to get to this point, it was substituted with some compromises to ease some concerns from opposition. I'm not too thrilled about some of the compromises, but I really cannot complain. The state capitol has finally acknowledged the needs of thousands of families in our state dealing with the costs of autism treatment. When the effects of this bill are reviewed in 2019 (the bill's sunset or "expiration date"), I'm hopeful lawmakers will be willing to make even more positive changes to autism coverage. Or better yet, perhaps in the meantime insurers will make changes of their own.
If you wrote to your representative or senator asking for their support, send your thanks! (Well, there were a few in the house and senate who did not support the final version.) If you would like, you can also contact Gov. Herbert to remind him to sign the bill and pass it into law.
I hope to update soon with news that the governor has signed SB 57. Thank you for your support, and if you are new to autism, coming here to learn more. We hope you'll stick around and read more about our adventures!
I'm pleased to write that SB 57 has been signed by both the Speaker of the House and the Senate President, and now awaits signature by Gov. Herbert!
In order for the bill to get to this point, it was substituted with some compromises to ease some concerns from opposition. I'm not too thrilled about some of the compromises, but I really cannot complain. The state capitol has finally acknowledged the needs of thousands of families in our state dealing with the costs of autism treatment. When the effects of this bill are reviewed in 2019 (the bill's sunset or "expiration date"), I'm hopeful lawmakers will be willing to make even more positive changes to autism coverage. Or better yet, perhaps in the meantime insurers will make changes of their own.
If you wrote to your representative or senator asking for their support, send your thanks! (Well, there were a few in the house and senate who did not support the final version.) If you would like, you can also contact Gov. Herbert to remind him to sign the bill and pass it into law.
I hope to update soon with news that the governor has signed SB 57. Thank you for your support, and if you are new to autism, coming here to learn more. We hope you'll stick around and read more about our adventures!
3.03.2014
SB 57 - Part 3
Great news!
SB 57 made it through the Senate! The margin was still closer than is comfortable (18-7), but I'll take it. It was so encouraging to hear several senators speak in support of this bill. Autism Votes wrote a quick summary of some of the things that were said.
From here, the bill must be passed by the House of Representatives. It will first be voted on by a committee, then be voted on twice by the full House.
You know what that means? Time to pester your representative!
This page by Autism Speaks will find your representative, write a letter with relevant facts and figures, and email it with your name in support of SB 57 automatically - just enter your name and address (you won't be put on any lists, promise).
If you'd rather use your own voice to express your support to your rep, find your house district here and then your rep from this list.
One more way to help is to fill out this survey to give our lawmakers some information about autism in Utah. Take it if you are caring for someone with autism, or have autism yourself.
Hopefully, SB 57 will have gone through the House by the end of the week. In the meantime, I get to watch and learn how the House floor proceedings work. Let me know if you'd like to watch as well - it's online, easy, and informative! The Utah Autism Coalition is a wonderful resource to learn more about this bill and about general advocacy for autism in Utah.
If this is your first visit to our blog, welcome! Scroll down for our first two posts about Utah's SB 57.
SB 57 made it through the Senate! The margin was still closer than is comfortable (18-7), but I'll take it. It was so encouraging to hear several senators speak in support of this bill. Autism Votes wrote a quick summary of some of the things that were said.
From here, the bill must be passed by the House of Representatives. It will first be voted on by a committee, then be voted on twice by the full House.
You know what that means? Time to pester your representative!
This page by Autism Speaks will find your representative, write a letter with relevant facts and figures, and email it with your name in support of SB 57 automatically - just enter your name and address (you won't be put on any lists, promise).
If you'd rather use your own voice to express your support to your rep, find your house district here and then your rep from this list.
One more way to help is to fill out this survey to give our lawmakers some information about autism in Utah. Take it if you are caring for someone with autism, or have autism yourself.
Hopefully, SB 57 will have gone through the House by the end of the week. In the meantime, I get to watch and learn how the House floor proceedings work. Let me know if you'd like to watch as well - it's online, easy, and informative! The Utah Autism Coalition is a wonderful resource to learn more about this bill and about general advocacy for autism in Utah.
If this is your first visit to our blog, welcome! Scroll down for our first two posts about Utah's SB 57.
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