Climbing Walls

Before Bug ever had a diagnosis, I felt like one might be coming. Mother's instinct, maybe. I'm a big reader, so I read articles and stories from and about other parents who went through referrals and tests and diagnoses with their own children already. One thing stuck out to me: every parent, at some point or another, goes through the stages of grief when their child receives a life-changing diagnosis. I knew that, and yet, after diagnois, I had no idea how those stages of grief would affect me - because they affect everyone differently.

You see, I thought I went through them pretty quickly. I thought I was ready to be optimistic and make oodles of positive changes and roll with the punches and not let the difficulties get me down....

But then they did, over and over. Week after week and month after month. And it wasn't until recently, when I felt a definite, remarkable change in my mood and our home environment, that I realized it took me much longer to grieve. To say the months since October have been a roller coaster is an understatement. I've changed and grown in so many ways I can't describe, and those changes and growth are still happening.

I think I'm finally at a point where I can do my best to share some of my changes and growth with you. I've wanted to share for so long, but it just never really felt right until now. Until today, actually.

I've split this post for length, so click on through to read more.

Happy April!

At our house, we're excited for April. We're ready for the nice weather, we're making plans for Bug's birthday, and he'll be starting preschool soon.

April also happens to be Autism Awareness Month. Some people celebrate, some don't, so keep in mind everything here is how we feel about this month.

If you're here reading this, you're already autism aware; congratulations! It's now our turn (and yours!) to go a little beyond that. Here are some ideas to spread compassion for autism this month:

1. Educate yourself! Pass along what you learn with others. The biggest thing to keep in mind about autism is that it affects every person with the diagnosis differently. As the saying goes, "once you've met one person with autism, you've met one person with autism". Don't assume that what you know can be applied to every person on the spectrum. Here are a few good places with basics and links to learn more:

-CDC

-Autism Speaks

-NIH

-Autism Society

Since you are here already, we also love to answer peoples' questions!

(I'd also like to briefly add that the autism community is a diverse one. Not everyone affected by it feels the same way about its potential causes, treatments, cure, or prevention. Just keep that in mind if you get to reading more than the broadest info about ASD, especially online.)

2. Wear something. It seems like such a simple and passive thing to do, but if wearing a puzzle piece ribbon opens up even one conversation with someone about autism, then I think it's worth it. Tomorrow, April 2, you can wear blue as part of Autism Speaks' international Light It Up Blue campaign to raise autism awareness. Sevenly is also selling some very cool (but pricey) clothes with autism messages this week only. You can always Google if you want to buy other autism stuff; there's plenty to browse.

3. Screen your child, if you've ever had any concerns about autism. Or, screen yourself! (Please note that online measures will not replace the advice and care of a doctor - they'll just give you a better idea of how you or your child compares to major attributes of ASD. Bug actually passed the first screening at his 18 month appointment!)

4. Think more positively about the people around you. If we've learned anything from this autism journey so far, it's that you never can tell everything that's going on with an individual or family from seeing them once in public. Or in many cases, even seeing them on a regular basis. Some people aren't open with diagnoses, like we have been. The bottom line is, you never know what is really driving peoples' behavior, so don't assume the worst!

5. Lend a hand. If you know someone affected by autism, offer to help them out somehow (and we're not fishing for anything, so think beyond our family!). You can take a meal, offer to have a child over for a playdate, organize a moms' or dads' night out for a parent, or offer to babysit. The biggest thing you can do is just be a friend. If you know a parent to a child with autism, don't let your childrens' differences hinder your friendship (your kids have more in common than you may think). If you know an individual with autism, work to have a genuine relationship with him/her. Make a true effort to enter his/her world and see things around us the way he/she sees them. 

These are just a few ideas. When the month of April is over, don't forget what you've learned! For families and individuals affected by ASD, autism awareness isn't reserved to April; it's an everyday thing. They need love, kindness, and understanding all year long.

What This Autism Mom Wants You to Know

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.

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!

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 - Part 2

Bug, wondering why this bill hasn't been passed unanimously.

Spread the news and pester your senator!

Today, SB 57 passed its second reading on the Utah state senate floor with 18 yeas and 8 nays. That means that (hopefully) tomorrow, it will be read for a third time in the senate, and if it passes that, be moved on to the house for three more votes.

In other words, SB 57 is facing an uphill battle. The margin is too close and people are too opposed to adding autism coverage to the list of things we, as taxpayers, already pay for. Even if you don't have an immediate family member with autism, you likely are closely connected to someone who does (see this post). Are you okay with your money going to that person? My guess is that if you are reading this post, your answer is yes.

So, please, TONIGHT email your senator. Then spread this post on to everyone you know in Utah.

This page by Autism Speaks will find your senator, 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 senator, find your senate district here and then your senator from this list.

Here's a quick rundown on the bill.

Here's the full info on the bill, if you're interested.

I'll keep you updated on the status of SB 57. I've been watching the senate floor proceedings every day this week - I know this makes me sound a little crazy, but it's been a wonderful learning experience. Let me know if you'd be interested in watching too. It's easy, and I can explain some of the procedures now if you have no idea what's going on.

Now go forth and pester!

SB 57

Here's my first (small) stab at activism. A bill, SB 57, has passed committee and will be put up to vote in the state senate soon. This is an email I just sent to our senator.

Dear Senator,

I am writing to express my support in S.B. 57, in hopes that you will support it as well.

I am a mother to Bug, an almost-three-year-old who was diagnosed with mild to moderate autism in October 2013. Our diagnosis journey started in May. Since then, life has been a whirlwind of evaluations, therapy appointments, in-home visits, office consultations, and tears.

However, amidst the pain and stress that an autism diagnosis inevitably brings, we know we are fortunate. Because I am a stay-at-home mom, we could attend last-minute evaluation openings that we otherwise would have had to wait months for. We have family members willing to babysit at nearly any hour we need them. We have friends who can watch our younger son during appointments so Bug can be our focus. We have savings, insurance to cover some of the costs of many evaluations, and the financial support of family members.

Not all families in Utah affected by autism have these supports. I can’t imagine what life is like for them. Even in our financial stability, we seriously considered moving as soon as the autism diagnosis became official. Effective autism treatment can costs tens of thousands per year, not including the cost of additional therapies, appropriate developmental aids and toys, and any specialist visits that may be needed. The numbers were so daunting we felt it might be well worth our time to move to a state that would extend insurance coverage to cover some of those costs. We eventually decided that we would remain in Utah where we have already established our home, in hopes that things might change here.

All parents want to see their children succeed; that desire is magnified when your child has special needs.  Every tiniest bit of progress, every small step in the forward direction brings the greatest of joys. We have felt that joy over and over again with Bug as he works with his various therapists. Throughout his eight months in therapy, we have seen his vocabulary grow from 10-15 words to four-word sentences. We have seen his overall mood and demeanor change from highly irritable to genuinely happy and curious. Perhaps most importantly, we have been able to learn how Bug interacts with the world through the help of caring therapists and other professionals.

Again, not every family affected by autism here in Utah is so fortunate. While every parent wants to see this kind of progress in their own families, it’s not always possible to receive the care needed to get there. While state programs have made a difference to Bug, we have had to pay thousands of dollars ourselves as well – money that many families simply can’t spare. The reality is that while autism is a lifelong diagnosis, early, intensive treatment can make a world of difference to children and families faced with it. We have seen this ourselves. We know that every penny we have spent towards Bug’s care means more developmental progress. Every penny means more happiness, contentment, and peace in our home. Every penny means my son will grow to his fullest potential and be able to show the world how wonderful he is.

That’s what this bill would do for thousands of other children in Utah. Every penny toward the treatment of autism means more children who make leaps and bounds in their development, who bring uncounted joys to their families and communities, and who are able to grow to show the world what talented, caring, and intelligent people they are.

Support S.B. 57 and support the many children in Utah like (and including) Bug. Urge your peers to do the same.

If you'd like to know more about this bill, go here, here, or here!