Not much of anything

I know, I know. I haven’t been around, again. We have had a busy week. Ms. N (who deserves a whole post to herself) was on vacation last week, so I had less time than usual. Even with having the extra help, we had a good week.

On Thursday, Mr. Boogie, Boogie, and I loaded into the car for a mini road trip to Michigan Adventure. After seeing how much Boogie enjoyed the rides at the fair, we thought we would give it a shot. Things went perfectly. Boogie was in sensory heaven, with all the spinning, falling, fast moving rides. There weren’t a lot of people, and the weather was beautiful. We were able to get what they refer to as a “boarding pass”. From what I understand, this works in much the same way as the disney parks pass. If the line was long, Mr. Boogie would go and get a return time for that ride. Usually, the time was however long the line was taking to go through. We tried not to use the pass, as we do want Boogie to learn to wait in line, but there were a few times we did use it.

I think the best part of the day was when we walked by a giant rollercoaster—one of the ones where your feet dangle— and heard everyone screaming and laughing. Boogie looked at me and said, “I want to do that one next, Mom.” As a person who mainly likes kiddie rides, I am major screwed in a few years!

The rest of the week was taken up by birthday party planning (she is going to be 4!), swimmimg, movie watching, and playing.

And, as a side note, I have a few posts swimming around in my head, so hopefully I will get to them this week!

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Autism is not the enemy

I have had this idea running, circling, evading my grasp for a while now. Every time I think I have “it”, I began to write and then I realize that the slippery little thought escaped once again.

I still haven’t fully caught it. But I think the time for letting it stew is well past. In the video the autism alliance made, I say, “I cried when we got the diagnosis. Hearing that your child has autism? That’s not something any parent wants to hear because you just know that things are going to be harder for your child.” I still stand by that statement. I don’t feel that I want to “beat” or “crush” or “kill” or “cure” autism. Autism is a part of my daughter. Everything she sees, everything she does, everything she is, is experienced through the lens of autism. I feel that it’s much the same as my one aunt, who has faith in God so strong that just being around her makes a person feel that they have strong faith, too. Everything my aunt experiences, everything she is, is viewed though the lens of her unshakable faith. Of course, faith is a choice, and autism is something you are born with (in my belief). Still, without her faith, my aunt would not be the aunt I know and love. Without autism, my daughter would not be the girl know and love.

I read, and hear comments from mothers and fathers that they would remove, cure, kill the autism in their child if they could. They say they hate autism but love their child. Often times, those in the autism world that think like I do condemn these mothers and fathers. I think what these parents really need is compassion. I think that perhaps they have experienced the case of “autism making life harder for their child”. I think that it is really society that is the enemy these parents need to fight. We, all of us, need to work together to educate society about autism.

We have been so blessed in our experiences with the public. Boogie has an awesome dentist, who listened as we educated her about how to handle Boogie. We have found doctors, teachers, babysitters, waitresses, cable guys, who have listened and then smiled easily at Boogie and have worked to create that positive interaction. We live in a smaller community, but we spend a lot of time in the larger cities surrounding where we are. When I first decided to join a gym in order to swim for exercise, I really didn’t know what I would do with Boogie. I took her with me, and just let her splash in the pool while I swam laps. Soon, she was having little conversations with other people who were swimmimg. And then I decided I wanted to take an actual water aerobics class. So I met with the girl who runs the child care center and who teaches the kid fit class. I talked about Boogie. I educated them on her behaviors, and how to respond. She has now been going three times a week for an hour. Boogie doesn’t love it, but she goes without complaint, and doesn’t have meltdowns while there.

I believe a lot of our positive experiences are because Mr. Boogie and I are willing to open up to people, to explain what Boogie needs. Because we are willing to educate people, they are willing to try. That’s not to say that we haven’t had bad experiences. I can vividly remember a time when I avoided taking Boogie anywhere. I didn’t know what she needed, yet, to be able to go out and handle a trip to the store. Melt-down after meltdown would occur, and from the outside, it could look very much like a toddler’s terrible tantrum. I couldn’t stand all the rude, nosy, stuck-up “helpful” people who would approach with their suggestions. But, I was also unwilling to stand up and educate these people.

I wonder how different the parents who hate autism would feel, if the public and people around them were educated. If they didn’t have to be afraid of the reactions they would get at the grocery store, or the waterpark. I wonder how different they would feel if people were able to show them compassion.
This is why we need to educate, and explain. This is why we need to stand up. Not just because we should be standing up for our kids, but because others in the autism community desperately need understanding.

20 follows?!?!

I check my email every morning. My game plan is always to get up with Mr. Boogie at 5:30, check email, write a blog post, and then relax and read my book. In reality, Boogie usually wakes me, I get her breakfast, let out the dogs, scan and delete email, chug coffee and then rush to make it to the gym in time for the “kid fit” class Boogie takes and the swim class I take. Whew. Holy mother of run on sentences! Anyways, the other morning as I was enjoying a cup of chocolate glazed donut coffee, I came across an email that informed me I had 20 followers! Wow. I wanted to thank you all for following me. I realize that a lot of bloggers have many more followers. I started blogging to give myself an outlet for everything that was happening in our lives. I hoped that my story might be able to help others out there who find themselves going through the same things. So, I hope you have enjoyed my posts thus far, maybe have had a laugh, learned something new, or not felt as alone in your struggles. Thank you, all 20 of you!

The in between

When I think about how much we have experienced in a year since Boogie’s diagnosis, I feel as though we have lived 10 years in the space of one. So much has happened that I haven’t taken the time to write about. If you have been following me from the beginning, then you know about the diagnosis, the insurance complications, finally starting ABA. There have been many blog posts about these things. There have been a few blog posts about day to day life. Even with all that, I have left so much out— all the in betweens.

I believe I wrote a bit about Boogie’s lack of sleep as a baby. This is what I personally believe triggered the gene responsible for autisim. That, however, is really a post for another day. This is about how her lack of sleep created a lack of sleep in me. I have always been one who needs little sleep. I dealt with (and still do) insomnia for years. So, five hours of sleep has always been about enough. I could routinely function on three or four, even two hours for a few days. Boogie, however, slept in thirty, sixty, and ninety minute cycles. So, I would get the baby to sleep —-which typically took around 2 hours— and then I would pump. (Why was I pumping? Because after my c-section, we allowed the nurses to take Boogie for a bath. Mr. Boogie and I both crashed. We had been awake for over thirty hours, and prior to that had only been asleep about three hours. So, we crashed. And the nurses fed Boogie a bottle. I was determined to breast feed. When Boogie proved to be either over stimulated —and thus unable to focus to nurse, or under stimulated— and thus too sleepy to even latch on, I chose to pump. It mattered to me that my child be breastfed.) Pumping took about thirty minutes. And so once I was done with that, if Boogie was still sleeping, I would lay down to sleep. And my mind would be afraid that if I managed to fall asleep, I was so tired, I might not wake up when Boogie woke up. So I would drift in and out of sleep. This went on for almost two years. When Mr. Boogie was home, I would sleep. When my Mom was able to come and take over, I would sleep. Otherwise, I shuffled through, existing in this strange state of never getting even two hours of straight sleep, of always being half awake even when I was “sleeping” and of always, always being terrified that if I actually fell asleep, I might not wake up when Boogie did. I could see it in my mind, my poor, already too sensitive, easily upset girl, laying in bed sobbing and her Mama not coming to her. I could not allow this to happen. It was my worst nightmare— not being there for my child.

This lack of sleep created issues for me. I had constant migraines. I couldn’t wear contacts anymore because it felt as thought I was putting glass shards in my eyes. I was overly forgetful, and I would repeat myself often. Sometimes, I would awaken stiff and sore, and the soreness wouldn’t leave for days. Boogie needed to be held constantly. Sometimes, even the holding and the rocking and the walking and the bouncing wouldn’t calm her. But, I felt that at least she would know her Mama was trying to comfort her. Holding her for hours, my arms would go numb. I became a total klutz. Knocking into things, bumping into walls, dropping things. I chalked it all up to being tired, and continued on as best I could.

In the spring of 2013, just before Boogie was diagnosed, we were down at the beach in our neighborhood. After swimmimg, we were letting Boogie play on the playground. Mr. Boogie said something to get a rise out of me, and when I punched him in the arm, he took off running. I flew after him. He had the advantage with long legs, but I was fast. Just as I almost caught up to him, I tripped on a tree root, twisted my left leg and the whole left side of. my body and went flying. I landed face down, like a belly flop onto hard green grass. I ended up with several minor injuries and a lot of pain. So, I was given a prescription pain med. And suddenly, all the aches and pains I had been experiencing for over a year, were dulled. The pain I had been in, the pain I hadn’t even realized I was experiencing was suddenly and wonderfully reduced to background noise.

I eventually made an appointment with my doctor. It was an appointment that I would cancel and reschedule many times. We had so much going on. Boogie was in full challenge mode, just getting her dressed was an exercise in patience and perseverance. Then there was a diagnosis. Then there was the discovery that Mr. Boogie’s employer was a self-funded, federally regulated health insurance plan. And so, they wee exempt from the state mandated autism coverage. Then there was the realization that we were not going to get the company to adopt coverage anytime soon. Then there was the fight to get myself and Boogie removed from the health insurance plan outside of open enrollment. Then there was the switching of insurance, and knowing that if I went to the doctor, I could not afford to have a preexisting medical condition because if and when we switched back to the company provided healthcare, Mr. Boogie did not need two dependents being charged for preexisting conditions. Then there was the realization that the new insurance had lied to us, the freaking jerks misled us, and they were, in fact not contracted with anyone but the awful ABA provider who I would never subject my child to in a million years. Then there was the pushing and fighting to get the center we wanted added to the insurance. Then there was the driving an hour each way, five days a week to ABA. There was the constant fatigue, almost like a layer of tiredness wrapping around me and digging it’s hooks in so deep, it was a fight each day to not fall asleep in the middle of conversations, driving, swimmimg, even walking. And finally, finally, I couldn’t do it anymore, and I kept my doctor appointment.

I am not much of a drama queen, not like I was back in high school or college, but I was really afraid that something was really wrong with me. My doctor is seriously the best doctor I have ever met, and that includes my daughter’s pediatrician. She is very real, and so incredibly non-judgmental. And so, I told her everything, including my fears that I was really really sick. And then Dr. S diagnosed me with fibromyalgia. And so began a new chapter of life, one of being a mommy and homemaker, one of caring for a high needs child, but also one of caring for myself.

I was lucky, incredibly lucky that we had a child care giver who would be able to help me daily. And when we chose to enroll back in the insurance provided by Mr. Boogie’s work, she was able to take Boogie to ABA and watch and learn, so that when January rolled around, she and I would be providing ABA for Boogie.

Since my diagnosis I have had bad times and good times. I’m blessed with a husband who understands, a nanny/ABA therapist who is wonderful and helpful, a doctor who is fantastic, an osteopathic pain doctor who has done wonders for me and a physical therapist who is helping me learn new ways to take care of my body.

So, since I have started this blog, a lot has changed in our lives. I’m learning to slow down, to stop and take care of myself. I’m trying to control my obsessive need for things to be neat and perfect. Life is messy. Life with autism and fibromyalgia is really messy. And so, Mr. Boogie, Boogie and I are learning together how to live this wonderfully messy life.

Michigan Shines for Autism Gala

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We were lucky enough to be able to attend the Michigan Shines for Autism Gala. It was an amazing evening, but first, I want to share the events leading up to the Gala.

Several months after we began our fight to get autism coverage added to our health insurance, Mr. Boogie had the opportunity to attend a training for emergency responders that was organized by the Autism Alliance of Michigan. While there, he met Dr. Colleen Allen, and was able to tell her a little bit about our situation. She agreed with him that it wasn’t right, and offered to help.

We were incredibly blessed to have her attend several meetings with us. At one point, I told her to let us know if there was anything we could do to help the alliance. It turns out, there was.

Colleen asked us if we would be willing to meet with a camera crew and interviewer to shoot a video. The video would tell about our journey leading to Boogie’s diagnosis, and of our experience with the Autism Alliance. It would be shown at their gala event, where sponsors, donors, and people who are affected by autism attend. We would be the “poster children” this year.

We actually ended up making two videos. Unfortunately, the first one which was done at the alliance headquarters didn’t turn out well, but we met several people who work for the autism alliance, so it was cool. The second video was shot in our home. That was a little more nerve racking because of my messy, pig-sty like approach to house cleaning but it was turned out well. The camera crew was great, and even Boogie liked them.

Once the video was made, Colleen invited us to attend the gala. So, I started the search for a dress. I ended up renting a dress from rent the runway . I was a little nervous about renting a dress, but the gala was a black tie event, and I wanted to make sure I fit in. I would definitely recommend this service to anyone in need of a dress. I originally chose two dresses, and neither worked for me. One was too small, and the other was strapless and didn’t feel like it was going to stay up very good. The consultant I spoke to was very understanding, and sent several more dresses for me to try. In the end, Mr. Boogie picked my dress. He has serious great taste— I got compliments all night long on that dress, and I felt beautiful. (And, just to finish off a great service, the consultant sent me 2 dozen beautiful red roses on Monday with a note saying she hoped my event went well and that I had a great time!)

Now, onto the actual Gala! The dinner was fantastic. They had a chocolate fountain and desert bar which was amazing. The presentations were entertaining and something we could relate to. They showed our video during this time. We hadn’t seen it yet, and I could feel tears threatening to fall as I watched. There is something about seeing your story presented all in one compact moment that makes you realize how far you have come and how much you have accomplished. After the video, Colleen got up speak, and she first began by talking about us and asking us to stand. I’m sure my face was beet red!—all those people turning to look at us and clap. It was nice, but oh-so-embarrassing.

The really fantastic part of the night was getting to mingle. We talked to so many people. Some who wanted to compliment us on winning the insurance fight, some who had children on the spectrum, and some who work with kids on the spectrum. It was awesome for Mr. Boogie to get to meet several other fathers who are really involved with their kids’ therapies and the autism world. So many of these men gave him their phone number with offers of friendship, support, an understanding ear. It was really incrediable. We ran into the head of behavioral health from HAP insurance. That was a really cool moment as well, because she informed me that my daily phone calls and emails truly helped push things into moving quicker, as far as getting ABA therapy centers approved to be in network with them.

We were able to speak with the Lt. Governor, and his wife, as well. The amazing thing about their story is they learned their daughter was autistic during the time (and partly because of) that the Lt. Governor was fighting so hard to get the mandate passed which requires all state regulated insurance in Michigan to cover autism treatments. They were both very kind, and still have a lot of ideas on how to help the autism community. One of the things they are big supporters of is smart 911. This is a service that allows you to input information for the emergency dispatcher to see when you call 911. You can link your cell phone to your home address, too. For those of us with kids on the spectrum, you can give specific information about your child. For some, this could be that your child is non-verbal, or won’t answer to their name. It could be that your child reacts badly to strangers and will kick and scream. Not all communities are equipped with smart 911 yet, but if your isn’t, think about suggesting adding it to your city council, or police chief.

We were honored to meet the Meador family. Dave Meador is the co-founder of the autism alliance of Michigan. I was amazed that he sought us out to thank us– to thank us?!?!— for sharing our story and for attending. He is am amazing person with an incredible vision for helping others. Without him, which allowed us to have the support of the alliance, I am convinced we may not have gotten the vote on adding autism coverage passed.

I don’t have a great way to end this post, but I want to thank the Autism Alliance of Michigan, Dr. Colleen Allen, Dave Meador, and so many others who helped us achieve our dream of getting autism coverage added to our insurance. It has been a very tricky road, but now that we have traveled down it, looking back, I can see all the people we have met, and experiences we have been blessed to have……all because we took the rougher road.

Da da dum…..commissioners’ meetings

I want to update you all on the commissioners meetings, and the outcome of them. I had started a draft a while back about the first few meetings we attended.

“So, I promised to let you all know about the commissioners’ meetings. We still have at least 2 more meetings to attend before all this is said and done. The first meeting went wonderfully, better than we expected.

When we got there, I was nervous. I didn’t know what to expect, and I felt like a kid playing at being a grown-up. We were lucky that Colleen, the president of the Autism Alliance, was going to be coming to the meeting. She had gotten herself put on the agenda so that she could answer any questions the board had, and to explain a little bit about how adopting coverage works. While we were waiting for her, Commissioner C, who had helped to make the board aware of the lack of coverage, came over and introduced himself. He asked us to if we would stand up and speak during the time when the chair would ask if anyone from the public would like to address the board. We said we would, and thanked him for the support and action he had taken to help get us closer to the goal of having ASD treatment coverage.

When the chair asked if anyone would like to speak, there were a lot of people who wanted a turn. They were there to speak on other issues. We waited our turn, and finally there was a break in the stream of people who wanted to be heard. I nudged Mr. Boogie, and he went up. Neither of us had prepared anything, but he spoke from the heart. I know it’s cheesy, but it’s the truth. He told the board how hard life was not knowing or understanding what was going on with our girl, how getting a diagnosis was a relief and heart-wrenching at the same time. He told them how cheated he felt when we discovered that our insurance didn’t cover treatment. He told them how hard he has worked to take care of his family, and what he has had to give up in order to pay for private insurance to get Boogie the therapy she needs. I swear, no one in the room uttered a word while he spoke. Everyone was listening. And the board was hearing him; I mean REALLY hearing him. When he sat down, he nudged me, and up I went. I left all the facts, information and technical stuff in my seat. I told the board what life was like before ABA. I told them the difference ABA made in such a short time. I told them how hard it was to lose the therapy that was making such a positive impact on our lives because we could not afford to keep paying for private insurance.”

So, our first few meetings went much like this. We attended each and every meeting that had autism coverage on the agenda. During that time, we were able to speak with many of the commisioners. So many of them were supportive, and apologetic that autism treatments weren’t covered. They truly wanted to rectify this. A lot of them thanked us— yes, thanked us!—- for bringing the fact they didn’t provide autism coverage to their attention, and for being at the meetings.

DA DA DUM DUM DA DA DUM DUM DUM DUM………

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On world Autism Day, the board of commissioners voted to adopt autism coverage!!!!!

I cried. I still get weepy when I think of where we started and where we are now. I am amazed at what we have accomplished. And so thankful that we were in a position to do so.

My letter to the county comissioner

In an effort to educate the person who would be presenting to the board of commisioners, I wrote her a letter that was from Mr. Boogie. Knowing that she would essentially be the one deciding if the ESO, as well as other offices in the county, adopted autism coverage, we knew we had to educate her.

“Dear Ms. County Admin,

My name is Mr. Boogie. I am an emergency dispatcher for the Evil Sheriff Office. I have worked for the county for 3 years now, prior to that I was a dispatcher for the city of Somewhere Around Here.
In the spring of 2013 my 3 year old daughter, Boogie, was diagnosed with autism spectrum disorder. My wife and I were very grateful to learn that a mandate had been passed in October of 2012 to include coverage for autism spectrum disorders and treatments for Michigan regulated health insurances; medically necessary treatments can be very expensive and many families go into debt to get their children even a fraction of the treatment they need. We were very disheartened to learn that the insurance provided by the county is federally regulated, and thus exempt from the mandate.
My wife and I chose to remove her and our daughter from my health insurance and purchase private insurance in order to provide Boogie with medically necessary interventions. This is financially draining us.
From the time that my daughter was diagnosed with Autism Spectrum Disorder, I have attempted to educated and advocate for change to the insurance policy within my human resources department. I was so glad to receive the news that you will be reviewing the process and costs of expanding the county health insurance to include autism coverage.
I’m writing to give you some information about autism and its’ treatments.
Because autism is a severe chronic developmental disorder which results in lifelong disability, the goal of treatment is to promote the child’s social and language development while minimizing behaviors that interfere with a child’s functioning and learning. Applied Behavior Analysis, or ABA, is considered to be the most effective evidence based therapeutic approach for children with autism. ABA is a method for teaching children with autism based on the premise that appropriate behavior –including speech, academics, and life skills– can be taught using scientific principals. Several landmark studies have shown that 50% of children who have been treated with ABA before that age of 4 showed significant increases in IQ, verbal ability and social functioning. Many children who receive ABA therapy are able to attend classes in school with their peers.
In the past, insurers have denied coverage for ABA based on the claim that ABA is experimental. These claims are not supported by science, as evidenced by the many studies conducted on ABA therapy. The American Academy of Pediatrics recently stated that “children who receive early intensive behavioral treatment have been shown to make substantial and sustained gains in IQ, language, academic performance, and adaptive behavior, as well as some measures of social behavior, and their outcomes have been significantly better than those of children in control groups”.
Recognition of the efficacy of ABA for improving the quality of life for children on the spectrum has led states across the country to mandate state based health insurers to cover evidence based, medically necessary autism therapies, such as ABA. Thirty-four states, including Michigan, have now passed autism mandates that specifically include ABA therapy. Although federally regulated insurances are exempt from the mandate, many companies and institutions are choosing to self adopt the provisions of state based autism insurance reform. Companies such as Home Depot, Microsoft, Comcast, and University of Michigan have opted to provide coverage within their self-funded health plans. Recently, Tri-care –the insurance provided to the military– chose to self adopt autism coverage.
Our County should cover ABA for employee dependents with autism as part of its mission to provide world class service to citizens and employees. It helps Our County as a community to help its employees provide autism treatments to their children. Autistic children who are helped by ABA to achieve higher levels of functioning have lower overall health care costs and require less assistance from their families. Successful early intervention for children with autism significantly reduces the future burden on taxpayers. A Pennsylvania study of private insurance coverage for autism therapies projected an actual cost savings to the state of over a million dollars per child.
You said it yourself— Our County is committed to a steadfast dedication to servicing the public and a commitment to excellence; this commitment is more important than ever due to the current economic climate. In these current economic times, many families without autism coverage are slowly drowning in debt just to provide their child with a fraction of the recommended treatments. Our County has always shown a commitment to excellence in caring for its’ employees from providing things like maternity or paternity leave to substance abuse and mental health treatments. In choosing to adopt autism coverage, Our County would be continuing to uphold its standard of excellence for citizens and employees alike.
You also speak to leaving a strong legacy for future generations of citizens and employees. Why not include autism coverage as a part of that legacy? Our County has always been a forward thinking community and organization. With autism rates on the rise, adopting autism coverage would not only leave a legacy for hundreds of future employees, but would also pave the way for other self funded companies in the community to adopt coverage.
For all these reasons, and so many more, I urge you to recommend that Our County adopt autism coverage. Autism Speaks has helped many companies and organizations implement autism benefits in their self funded health care plans. They stand by ready to answer questions, discuss cost vs. benefits, and help in any other way possible. I would be happy to provide you with their contact information, or to set up a meeting for you.
In addition, I would welcome an opportunity to meet with you and discuss autism and treatment coverage farther.
On behalf of my daughter, and all other children of Washtenaw County employees who are fighting the challenges of autism everyday, I thank you for your time and for considering this request.

Sincerely,
Mr. Boogie”

As a result of this letter, we were granted the opportunity to meet with the county admin, and discuss autism. We were fortunate enough to have Dr. Colleen Allen attend with us. Dr. Allen was instrumental in passing the mandate for autism coverage, and is extremely knowledgeable in all things autism related. She is currently the president of Michigan’s Autism Alliance.

The county administrator (who we’ll call Amy) turned out to be very open to hearing us speak. Amy was warm and welcoming to the three of us. With her at the meeting was Dana, the human resources director of the ESO. Mr. Boogie was especially happy to see her so he could rub it in her face that we were being listened to by HER superior even after all the phone calls and emails she ignored.

After everyone was introduced, and Amy thanked Mr. Boogie for his very eye-opening letter, I started off the meeting by explaining what autism is. So many people still have very old fashioned ideas about autism, and even very educated people truly have no idea what autism actually is. From there, we discussed treatments, and Michigan’s idea that front-loading treatment would produce more productive and independent individuals and save on costs in the long run. Dr. Allen was able to give a lot of information on the numbers, and on the thought process behind the mandate. She also explained how Michigan’s reimbursement program works. Simply put, the program reimburses companies who choose to self adopt autism coverage on their costs related to autism treatment. It is an awesome program, and a great incentive to federally regulated companies to adopt coverage. Towards the end of the meeting, Mr. Boogie talked about how autism effects the police and emergency responders. We suggested that using therapy like ABA to teach a child to respond to their name would cut down on the number of autistic children that go missing. I shared a few stories about Boogie, and some comparisons of before and after receiving ABA.

It was a good meeting, and we left feeling that Amy, and even Dana were rooting for Team Boogie.