Well, it's been over three months since the last post on this blog. Since then, Bug has overcome some big hurdles we were dealing with in regards to attachment and rigidity, and he finished up sessions of feeding therapy and speech therapy, exceeding all the goals we set for him there. He also finished his first year of preschool and we have seen his social growth. But that's not what I want to write about today.
This is a space to talk about autism and about how it affects Bug; but we also want to talk about how it affects the rest of us, because it does every single day in major and minor ways. What I'm writing about has been in some ways intertwined with having autism as part of our lives, and in other ways, not.
I have been diagnosed with depression.
That may not seem like a major event, but it really has been. It was a long time coming and even though there were signs over a year ago, I never got a formal diagnosis and never seriously stuck with treatment. I'm happy to say that now I am finally feeling like me again.
I don't bring this up as an excuse for neglecting this blog a bit, or for sympathy, or for any other reason than I think it needs to be talked about more. More parents, more women, more LDS church members, more families with special needs children need to know that this can happen to them, and that if it does, it's not anyone's fault. If I can help at least one other person going through the pain I went through for so long, this is worth it. I will continue to write about my experiences with depression and how they have helped me with Bug in the future; this is an introductory post on the topic so you have some background for future reference.
(long post, so click through to read the rest)
Adventures in autism with the sweetest child ever.
Showing posts with label resources. Show all posts
Showing posts with label resources. Show all posts
6.04.2015
6.25.2014
Finding Happiness
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| Bug finds lots of happiness when he's outside. Bubbles increase it. |
I've mentioned, mostly briefly, before that the months after Bug's diagnosis was a rough time for me. I've never discussed it much detail, though, due to fear and plain shyness. But I'd like to discuss it more directly now in case there's anyone out there like the Me of a Few Months Ago who wanted so desperately to know that she wasn't alone in her feelings.
I knew that Bug's autism diagnosis would bring with it the stages of grief. I just felt like I had been grieving for so long and I didn't want to anymore. But, no matter how hard I tried, I didn't feel I was getting better. Some days, it took all I had to just get out of bed in the morning. I wasn't connecting with the kids or my husband like I wanted. I tried to do things that in the past would have made me happy, but they didn't anymore. If anything, they were a short (or much too long) escape from my everyday life.
Somewhere, in the back of my mind, I knew I had never felt that way before and I should talk about it. I rationalized myself away from that, though, and my internal monologue just got worse:
"There must be something you think you are good at."
"...Being lazy?"
"Come on, people tell you are talented and wonderful. They can't all be wrong."
"They all might think that, but they don't really know me. They're wrong."
"Just one thing. You can think of one positive thing about yourself."
"I CAN'T."
Over and over, I thought things like this. These thoughts didn't really scare me, because I knew I was right. I knew I was worthless, so there was no harm in thinking that way. After a while, I simply didn't feel much of anything else but self-loathing and utter isolation.
Hating yourself is exhausting. I finally got to a point where I didn't want to keep wasting all of my energy on it. I still didn't want to talk to anyone honestly about what I was feeling, so I turned to the internet. I looked up depression symptoms and could hardly stand to read them because I couldn't be depressed, I just needed to stop feeling sorry for myself.
A few weeks of this, and I knew I had to do something, not for me, but for my family because I could see the toll I was taking on all of them. I found an online depression screening quiz, emailed the results to myself, and showed them to my husband because I couldn't figure out what words to say. Then came appointments, a willingness to talk more, very small and attainable goals (take a shower and get dressed today), a daily nighttime list of the things that made me smile, and little positive changes every day.
I started trying to pray, and read scriptures and talks more regularly. I remember the day I came across a talk called "The Moving of the Water", and I knew it was a direct answer to my many tearful and pleading prayers. This paragraph felt written just for me:
"You parents and you families whose lives must be reordered because of a handicapped one, whose resources and time must be devoted to them, are special heroes. You are manifesting the works of God with every thought, with every gesture of tenderness and care you extend to the handicapped loved one. Never mind the tears nor the hours of regret and discouragement; never mind the times when you feel you cannot stand another day of what is required. You are living the principles of the gospel of Jesus Christ in exceptional purity. And you perfect yourselves in the process." (The Moving of the Water, Boyd K. Packer, April 1991.)
I felt so often those tears, those hours of discouragement, and those times where I felt I could not "stand another day of what is required" - I still do sometimes. But instead of being told that it was all okay because I was given Bug due to my strength and inherent amazing qualities (which I could not believe at all I had), I was told that those feelings are okay. I was told that, yes, I was given a challenge that at times feels impossible, but it is a challenge that I can use to make me a better person. With work and (lots and lots) of faith, I can use this challenge - raising a son with autism - to be a better me and learn more about Jesus Christ in ways that I would not be able to otherwise.
Life hasn't been all rosy since I decided to make positive changes, but it has become more bearable, and best of all, I feel truly happy once again. But I know now that just as Bug needs encouragement, individual attention, and gentle care each day to grow, learn, and be happy, I do as well - so does my husband and Bear.
If that internal monologue up there seems familiar to you, please don't hesitate to do something (safe) to reach out and get whatever help you need. What you need may be different from what helped me. I promise that you are not alone in your feelings and that impossible as it may seem, you will feel happiness again.
Some more words that have helped me immensely: "Like a Broken Vessel", Jeffrey R. Holland, Oct. 2013.
6.08.2014
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.
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.
4.01.2014
Happy April!
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
-NIH
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.
3.19.2014
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.
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.
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.
2.27.2014
SB 57 - Part 2
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| 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!
2.17.2014
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.
1.24.2014
The Big Question
I'm bursting at the seams with posts to write. I want to tell the whole world all about our life with autism. But it's so hard to know how to break that down. So, I'm starting with the basics.
What is autism?
Leaving the medical explanations, speculations, and gobs of research behind, here's what autism is for our family, in the 3.5ish months since diagnosis day.
Autism is energy. Bug is under sensitive to proprioceptive and vestibular input (the two senses you didn't know you have), meaning we have lots of spinning, jumping, running, crashing, etc. in our house. He once took grandpa for an hour+ walkaround beyond the neighborhood, then came home and jumped on his trampoline for at least 15 minutes.
Autism is a roller coaster. Some days Bug seems like any other toddler. Others, the difficulties that autism brings take over the day completely. All toddlers have good and bad days, but autism amplifies those highs and lows a few times.
Autism is tears - from everyone. Sometimes the hard days make Bug cry a lot. Sometimes Mom and Dad cry from pride at Bug trying or mastering something new. Sometimes Bear cries because he has to hang out in the safety of his crib alone for a bit while we pass through a meltdown. Sometimes we just cry for no reason!
Autism is nonstop learning. Every day brings us new lessons in what Bug feels and needs. Bug's therapies include Mom and Dad learning different strategies and activities to help him learn and grow. Beyond Bug, the autism world is a big one that I feel I've only barely caught a glimpse of.
Autism is a battle. In Utah, autism treatment isn't covered by insurance. Period. There are a few lucky privately funded insurance plans that cover treatments (that's something!), but most of us are on our own. If a child has another condition or diagnosis that is covered, awesome - there's a way to get some help. But Bug doesn't have another diagnosis. Then there's the whole battle against ignorance. We're fortunate to not have faced this much so far. But it's still so sad how many people think autism is made-up, or a plea for attention, or a conspiracy by doctors and drug companies fueled by greed (yes, people actually think this).
Autism is joy. Even with all his difficulties, Bug is the happiest, sweetest toddler we know. His smile and laugh are infectious. He finds joy in the simplest of things. We find joy with every improvement he makes, whether it's a baby step or a leap forward. We can see the joy the boys have when they are together, even though they don't understand each other very well yet. We see Bug bring joy to his family, friends, and even random people he meets in passing.
Autism somehow just makes the sweet things in life even sweeter. Autism makes Bug sweeter. That's why he's our bucket of sugar.
What is autism?
Leaving the medical explanations, speculations, and gobs of research behind, here's what autism is for our family, in the 3.5ish months since diagnosis day.
Autism is energy. Bug is under sensitive to proprioceptive and vestibular input (the two senses you didn't know you have), meaning we have lots of spinning, jumping, running, crashing, etc. in our house. He once took grandpa for an hour+ walk
Autism is a roller coaster. Some days Bug seems like any other toddler. Others, the difficulties that autism brings take over the day completely. All toddlers have good and bad days, but autism amplifies those highs and lows a few times.
Autism is tears - from everyone. Sometimes the hard days make Bug cry a lot. Sometimes Mom and Dad cry from pride at Bug trying or mastering something new. Sometimes Bear cries because he has to hang out in the safety of his crib alone for a bit while we pass through a meltdown. Sometimes we just cry for no reason!
Autism is nonstop learning. Every day brings us new lessons in what Bug feels and needs. Bug's therapies include Mom and Dad learning different strategies and activities to help him learn and grow. Beyond Bug, the autism world is a big one that I feel I've only barely caught a glimpse of.
Autism is a battle. In Utah, autism treatment isn't covered by insurance. Period. There are a few lucky privately funded insurance plans that cover treatments (that's something!), but most of us are on our own. If a child has another condition or diagnosis that is covered, awesome - there's a way to get some help. But Bug doesn't have another diagnosis. Then there's the whole battle against ignorance. We're fortunate to not have faced this much so far. But it's still so sad how many people think autism is made-up, or a plea for attention, or a conspiracy by doctors and drug companies fueled by greed (yes, people actually think this).
Autism is joy. Even with all his difficulties, Bug is the happiest, sweetest toddler we know. His smile and laugh are infectious. He finds joy in the simplest of things. We find joy with every improvement he makes, whether it's a baby step or a leap forward. We can see the joy the boys have when they are together, even though they don't understand each other very well yet. We see Bug bring joy to his family, friends, and even random people he meets in passing.
Autism somehow just makes the sweet things in life even sweeter. Autism makes Bug sweeter. That's why he's our bucket of sugar.
1.06.2014
Lessons from a Meltdown
One of the first things you quickly learn about a toddler with autism is that sometimes they go beyond the realm of tantrums into a Meltdown. Yes, capital M Meltdown. We saw these before we ever had a diagnosis, but didn't have a name or explanation for them.
The basics: toddlers often have tantrums, we all know them: the child doesn't get his/her way, and starts yelling/screaming/kicking/whatever it takes to try to manipulate the parent into a desired outcome. The key here is that the (neurotypical) toddler knows what he/she is doing. The toddler is actively trying to change things. A toddler with autism may start with a tantrum, but eventually gets to a point of no return where it's not even about a desired outcome anymore. He/she loses conscious control of the situation. Read a better explanation of a Meltdown here .
Today's Meltdown: Bug wanted yogurt. We were out. He still wanted yogurt. I made some suggestions, none of which were yogurt, and therefore were not acceptable. I could sense the impending Meltdown, so I tried to redirect, but Bear started crying and I think that's where we crossed the line. Goodbye event horizon, hello black hole.
Bug's choice of calming behavior during a meltdown is chewing on his fingers. Not biting his nails, not nibbling on the tips, but sticking as much of his hand as he can in his mouth and chewing like it's a snack. Obviously, we don't like this very much and it hurts him.
So, the Meltdown has commenced, and with it, the hand chewing. I tried giving him other sensory input: rubbing his hands, soothing noises, massage, offering his chewy tube...nothing was working. The unfortunate reality is that the best you can do during a Meltdown is minimize damage and wait it out. So I tried to keep him from biting and tried to keep myself from going into Meltdown, too.
I'm not very good at keeping myself from going into a Meltdown. All I can see is my child hurting. Thinking about how scary it must be for him: all his senses are sending unpleasant messages and he doesn't know how to cope, how to escape the neurological barrage. In these moments I often think, "autism has taken over, this isn't Bug", because it's the only thing that keeps me from getting mad at him.
Instead, I get mad at autism. I yell and scream at it in my mind. I demand to know what right it think it has to take over my son and cause him pain. Because the Meltdowns aren't Bug. He's made up of more than sensory issues and communication delays and social deficiencies. He's smart, loving, imaginative, adorable, and my little boy. He's amazing! And I hate that autism can sometimes overshadow those things or keep them hidden from the different people he meets.
But I know Bug wouldn't be Bug without autism. Since the diagnosis, learning more about autism and watching Bear grow up, we are starting to see just how much it's been a part of Bug since birth. I think that's the hardest thing to accept. Sometimes I may hate autism, but it's an integral part of Bug, of our lives, and it isn't going anywhere. If there was a cure for autism, would we take it? No. Because I know that despite the Meltdowns and all the other challenges Bug faces, autism has given him something that I can't yet put into words. I suppose it's like someone being born blind: they don't know what a violin looks like, but they can listen to orchestras and symphonies and maybe even enjoy music in a way that the rest of us can't because we're too busy watching the music being made instead of really listening to it.
That's my daily challenge - trying to enjoy the music, listen to its little nuances, and find ways to be thankful for autism. Because I am beyond thankful for Bug, and autism is a part of him.
The basics: toddlers often have tantrums, we all know them: the child doesn't get his/her way, and starts yelling/screaming/kicking/whatever it takes to try to manipulate the parent into a desired outcome. The key here is that the (neurotypical) toddler knows what he/she is doing. The toddler is actively trying to change things. A toddler with autism may start with a tantrum, but eventually gets to a point of no return where it's not even about a desired outcome anymore. He/she loses conscious control of the situation. Read a better explanation of a Meltdown here .
Today's Meltdown: Bug wanted yogurt. We were out. He still wanted yogurt. I made some suggestions, none of which were yogurt, and therefore were not acceptable. I could sense the impending Meltdown, so I tried to redirect, but Bear started crying and I think that's where we crossed the line. Goodbye event horizon, hello black hole.
Bug's choice of calming behavior during a meltdown is chewing on his fingers. Not biting his nails, not nibbling on the tips, but sticking as much of his hand as he can in his mouth and chewing like it's a snack. Obviously, we don't like this very much and it hurts him.
So, the Meltdown has commenced, and with it, the hand chewing. I tried giving him other sensory input: rubbing his hands, soothing noises, massage, offering his chewy tube...nothing was working. The unfortunate reality is that the best you can do during a Meltdown is minimize damage and wait it out. So I tried to keep him from biting and tried to keep myself from going into Meltdown, too.
I'm not very good at keeping myself from going into a Meltdown. All I can see is my child hurting. Thinking about how scary it must be for him: all his senses are sending unpleasant messages and he doesn't know how to cope, how to escape the neurological barrage. In these moments I often think, "autism has taken over, this isn't Bug", because it's the only thing that keeps me from getting mad at him.
Instead, I get mad at autism. I yell and scream at it in my mind. I demand to know what right it think it has to take over my son and cause him pain. Because the Meltdowns aren't Bug. He's made up of more than sensory issues and communication delays and social deficiencies. He's smart, loving, imaginative, adorable, and my little boy. He's amazing! And I hate that autism can sometimes overshadow those things or keep them hidden from the different people he meets.
But I know Bug wouldn't be Bug without autism. Since the diagnosis, learning more about autism and watching Bear grow up, we are starting to see just how much it's been a part of Bug since birth. I think that's the hardest thing to accept. Sometimes I may hate autism, but it's an integral part of Bug, of our lives, and it isn't going anywhere. If there was a cure for autism, would we take it? No. Because I know that despite the Meltdowns and all the other challenges Bug faces, autism has given him something that I can't yet put into words. I suppose it's like someone being born blind: they don't know what a violin looks like, but they can listen to orchestras and symphonies and maybe even enjoy music in a way that the rest of us can't because we're too busy watching the music being made instead of really listening to it.
That's my daily challenge - trying to enjoy the music, listen to its little nuances, and find ways to be thankful for autism. Because I am beyond thankful for Bug, and autism is a part of him.
10.12.2013
Where To Start
Where do I start?! This little guy is our Bug. He just passed 30 months and has taken our little family of four on quite the ride the past 7 months. We also have Mom, Dad, and newborn Bear.
Let's first rewind to March. Bug's annual well-child appointment was coming up, and we knew the doctor was going to be asking about his speech. We talked about how he was slightly behind at his 18-month appointment, and we'd follow up when he turned 2. Here he was, a few weeks away from 2, and we knew he hadn't improved much. We sat and made a list of the words Bug had. We even included animal sounds. It was a very short list. We knew that at 2, he was supposed to be starting to use two-word phrases. We were so far from that.
Time for the appointment...the doctor said Bug is healthy and such a smart boy, but we should get a speech evaluation done. No problem, that can be done right across the hall at the children's rehab office. Hearing assessment done first - perfect hearing, like we thought. Bug loved the speech evaluation: he got to play the entire time. We did a lot of talking about Bug's behavior, habits, likes/dislikes, on and on, in addition to details about his communication. The therapists loved him.
After just a few days, we got the full report. We knew he was behind, the evaluation was just supposed to determine how far behind. Severe mixed receptive/expressive language disorder. Definitely more far behind in expressive. Age equivalencies, percentile rankings, suggested treatment, good prognosis.
The two words that stuck out in the five-page report: Severe. Disorder.
We couldn't believe those two words would be associated with our sweet, smart, adorable Bug. That's when the blaming started. Maybe we were doing something wrong, not doing enough, and that's why his speech was behind.
Luckily, we have a wonderful family who helped us get over that. It's nobody's fault that Bug is behind in speech. It's just something that happens to kids. Him needing speech therapy is not a negative reflection on our parenting. If anything, the fact that we were looking into therapy was a sign that we're being good, caring, supportive parents. All of us will work together to get him caught up.
Next up, a feeding evaluation. The speech therapist felt that with his very limited diet, we should get that done to see what was up. More guilt. Another report, this time six pages. Significant feeding difficulties. He didn't have motor issues impeding his eating, just behavioral, and maybe sensory, so guess what? let's get that checked out, too.
Want to know something fun about insurance? When a child is delayed, without a medical diagnosis (like a chromosomal abnormality, physical disability, etc.), insurance doesn't have to cover treatment. They cover evaluations to a degree, so you can know what's up, but if a kid is just delayed without a "good" reason, that means they'll catch up on their own!! You don't need therapy coverage if they'll eventually catch up!! (Sarcasm exclamation points.)
Back in February, a friend gave us the contact information for Early Intervention, a state agency that offers therapy services to every kid in the state who needs them. Since it's significantly cheaper (as in free, compared to hundreds of dollars per session) than private therapy, we needed to check them out. We were so worried that Bug wouldn't qualify, that he wouldn't have a strong enough need for their services.
Evaluation day for EI came one week after Bear's delivery. By that point, we knew exactly what questions they were going to ask about Bug's development, and what sorts of assessing they were going to do with him. We'd already done it all with the speech and feeding evaluations. We handed over those results. And, surprise, Bug was being cooperative and showing off all his strengths. It may sound weird, but we were hoping they would get at least a small glimpse in person of what his behavior can be like every day, instead of us looking like fools saying "he's not always this happy! or cooperative! he really does need help!". Finally, he lost patience and started melting down. Our service coordinator said "You all certainly need the help we can offer. You are the most patient parents I've ever seen. We'll make sure he qualifies, no matter what his tests right now say."
The EI evaluation left us feeling nothing but relief. We were finally going to get Bug the therapy he needed, and we'd get the tools we need to help him be happy, healthy, and developing as he should. EI planned to get Bug an occupational therapist, who would work on feeding and also assess his sensory needs, and a speech therapist, who would work on developing his language skills.
We had the feeling that maybe his sensory needs were the root of many problems, and we were able to get in a last-minute opening with a private OT to do a sensory evaluation. Why not, the more we know about what's going on with Bug, the better. No big blows with those results, Bug definitely has sensory processing disorder. This is all along the lines of what our EI OT found, and what we had guessed after lots of Googling and reading.
Through Mom's work at schools, she was able to work with some special-needs kids. Inevitably, she'd get a question from one of the other students, something like "Why doesn't he have to sit and do this activity? Why is she doing that, I thought it was against the rules?". Her go-to answer was always "His brain just works differently than mine and yours. He needs different things." Kids are amazing, and most of them, of a variety of ages, understood and accepted this explanation.
Bug's brain works differently than Mom's, and Dad's, and Bear's, and that other kid who is his age and talks in full sentences. That's just how he is. We have learned now, more than ever, just what that means. It means we have to change the way we act and parent and teach him because his brain just works differently. It's different, it's not wrong. We won't lie and say it's easy, because it's the hardest thing we've ever done. But it's worth it, because we love our family more than anything.
Let's first rewind to March. Bug's annual well-child appointment was coming up, and we knew the doctor was going to be asking about his speech. We talked about how he was slightly behind at his 18-month appointment, and we'd follow up when he turned 2. Here he was, a few weeks away from 2, and we knew he hadn't improved much. We sat and made a list of the words Bug had. We even included animal sounds. It was a very short list. We knew that at 2, he was supposed to be starting to use two-word phrases. We were so far from that.
Time for the appointment...the doctor said Bug is healthy and such a smart boy, but we should get a speech evaluation done. No problem, that can be done right across the hall at the children's rehab office. Hearing assessment done first - perfect hearing, like we thought. Bug loved the speech evaluation: he got to play the entire time. We did a lot of talking about Bug's behavior, habits, likes/dislikes, on and on, in addition to details about his communication. The therapists loved him.
After just a few days, we got the full report. We knew he was behind, the evaluation was just supposed to determine how far behind. Severe mixed receptive/expressive language disorder. Definitely more far behind in expressive. Age equivalencies, percentile rankings, suggested treatment, good prognosis.
The two words that stuck out in the five-page report: Severe. Disorder.
We couldn't believe those two words would be associated with our sweet, smart, adorable Bug. That's when the blaming started. Maybe we were doing something wrong, not doing enough, and that's why his speech was behind.
Luckily, we have a wonderful family who helped us get over that. It's nobody's fault that Bug is behind in speech. It's just something that happens to kids. Him needing speech therapy is not a negative reflection on our parenting. If anything, the fact that we were looking into therapy was a sign that we're being good, caring, supportive parents. All of us will work together to get him caught up.
Next up, a feeding evaluation. The speech therapist felt that with his very limited diet, we should get that done to see what was up. More guilt. Another report, this time six pages. Significant feeding difficulties. He didn't have motor issues impeding his eating, just behavioral, and maybe sensory, so guess what? let's get that checked out, too.
Want to know something fun about insurance? When a child is delayed, without a medical diagnosis (like a chromosomal abnormality, physical disability, etc.), insurance doesn't have to cover treatment. They cover evaluations to a degree, so you can know what's up, but if a kid is just delayed without a "good" reason, that means they'll catch up on their own!! You don't need therapy coverage if they'll eventually catch up!! (Sarcasm exclamation points.)
Back in February, a friend gave us the contact information for Early Intervention, a state agency that offers therapy services to every kid in the state who needs them. Since it's significantly cheaper (as in free, compared to hundreds of dollars per session) than private therapy, we needed to check them out. We were so worried that Bug wouldn't qualify, that he wouldn't have a strong enough need for their services.
Evaluation day for EI came one week after Bear's delivery. By that point, we knew exactly what questions they were going to ask about Bug's development, and what sorts of assessing they were going to do with him. We'd already done it all with the speech and feeding evaluations. We handed over those results. And, surprise, Bug was being cooperative and showing off all his strengths. It may sound weird, but we were hoping they would get at least a small glimpse in person of what his behavior can be like every day, instead of us looking like fools saying "he's not always this happy! or cooperative! he really does need help!". Finally, he lost patience and started melting down. Our service coordinator said "You all certainly need the help we can offer. You are the most patient parents I've ever seen. We'll make sure he qualifies, no matter what his tests right now say."
The EI evaluation left us feeling nothing but relief. We were finally going to get Bug the therapy he needed, and we'd get the tools we need to help him be happy, healthy, and developing as he should. EI planned to get Bug an occupational therapist, who would work on feeding and also assess his sensory needs, and a speech therapist, who would work on developing his language skills.
We had the feeling that maybe his sensory needs were the root of many problems, and we were able to get in a last-minute opening with a private OT to do a sensory evaluation. Why not, the more we know about what's going on with Bug, the better. No big blows with those results, Bug definitely has sensory processing disorder. This is all along the lines of what our EI OT found, and what we had guessed after lots of Googling and reading.
Through Mom's work at schools, she was able to work with some special-needs kids. Inevitably, she'd get a question from one of the other students, something like "Why doesn't he have to sit and do this activity? Why is she doing that, I thought it was against the rules?". Her go-to answer was always "His brain just works differently than mine and yours. He needs different things." Kids are amazing, and most of them, of a variety of ages, understood and accepted this explanation.
Bug's brain works differently than Mom's, and Dad's, and Bear's, and that other kid who is his age and talks in full sentences. That's just how he is. We have learned now, more than ever, just what that means. It means we have to change the way we act and parent and teach him because his brain just works differently. It's different, it's not wrong. We won't lie and say it's easy, because it's the hardest thing we've ever done. But it's worth it, because we love our family more than anything.
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