Autism Awareness Month- The Good, Bad and Ugly

Autism mom disclaimer...I would like to start off by saying I am NOT anti-autism awareness or against any sort of fundraising or awareness seeking efforts. We have a dedicated month and/or day for just about everything these days and autism is no different. I like the idea of raising awareness for autism and any other disability or cause out there. I also respect other opinions on how they feel about this day and what they chose to support.

Good: As we all know, April is Autism Awareness Month and that April 2nd is considered World Autism Awareness Day. I love this time of year! For one, it is finally spring in Minnesota so bring on the Vitamin D and happiness! Also, I love that autism is not a low incidence disability and we "have the floor" to spread awareness and bring attention to a well deserving cause. It brings about all kinds of conversations regarding autism, including- research, education, therapy, funding, legislative action, family support, and insurance. These are all not only good conversations to have, they are FABULOUS! In many ways it can bring communities together. Last year, I made a ridiculous amount of pulled pork with homeade barbeque sauce for my husband's office and people paid a per plate fee as well as other donations and we gave that to a local organization that funds the schooling and therapy my children receive. It felt AMAZING to do that and it was fun for my husband to have his work crew come and celebrate the awareness he was trying to spread. We have done a walk or two this time of year and that has been fun too. I prefer the autism 5K in May though as it is much warmer :) Spread the autism love and awareness in April! We live the life 24/7, but I will take a month of recognition and awareness. That works.

Bad: The unfortunate part of all this celebration and reaching out to spread awareness is that is shows what a segregated community we actually are. There is always a little dissension in any group and there is room for all opinions and value systems. My issue with all of this is due to the fact that within the autism community there is almost too much discord and it is not helping our cause at all. I spent much of my adult life working with children and families with special needs and have been immersed in disabilities most of my life. I can honestly say the autism community ranks high on the list of "most infighting among a disability community." There are a few others that are right up, for example, the deaf hard of hearing community has some separation between those who want to hear via cochlear implant and those who want to remain as they are and stay strong. It isn't a right or wrong thing, it is more a passion about what you believe in thing. This is the part that goes bad. When your passion about what you believe leads you to a place where you no longer respect or appreciate what others are doing it has, in my opinion, went wrong. I think one of the reasons for all of this friction is because of the numbers- 1 in 68, that really makes our community large, which in turn opens the door to more opinions and emotions. I get that, but what I don't get is the animosity. This brings me to the ugly.

Ugly: This is my least favorite part of the awareness campaign. Hot button topics include- vaccinations, Autism Speaks, Jenny McCarthy, ABA, medications, and the hits just keep coming. I don't care if you vaccinated your child or not. I did and would do it again. I did my research and my husband and I made the choice we felt was right. I don't hate Autism Speaks, but I wish people would educate themselves more before they prolifically cry out for everyone to Light it up Blue! The campaign for World Autism Awareness Day and Light it up Blue is created by Autism Speaks, which is not a bad thing, but the autism symbol isn't just blue. The puzzle piece associate with Autism Speaks is blue, but that is the only blue thing going on with autism awareness. There is nothing wrong with this at all- just my daily soapbox on educating yourself on the causes you support. Autism Speaks has their flaws as does any large scale non profit organization. They do great things as well. I will put out my blue light. I love to raise awareness. If nothing else, it brings up the topic with my neighbors, which is great. As for World Autism Awareness day, well our family LOVES to celebrate so we find any excuse to do so. This is just another day to get some yummy food and hang out as a family. We figure, why not?  It shows our 10 year old, who is NOT on the spectrum, that sometimes autism gives us a reason to have fun. These are the Pants family reasons to celebrate- very individualized. :) We typically chose to support our local autism resources that we have sought out to help us with what we need. I want to give back to those organizations that have helped us so much! That is just our choice though- again, very individualized!

So in summary, light it up blue, color the world, whatever you chose to do to bring awareness for autism in the month of April. If I may be so bold, could we all use this as an opportunity to quit the hate mongering of those that chose a different path. This is a spectrum disorder so expect and tolerate a spectrum of ideas and opinions. Be grateful we have a community with so many wonderful families with stories of success, tragedy, drama and comedy to share. We are all on the same team, can't we all just get along? The road of a family dealing with autism is stressful enough, so I will close with some of my favorite words of the Beatles-

Oh
Come together
Yeah come together
Yeah come together
Yeah come together
Yeah come together
Yeah come together
Yeah come together
Yeah oh
Come together
Yeah come together

Okay, I am done now. I hope I didn't offend. I just want this to be a reminder that we can all be on the same team. Let's take the month of April to forget about our opinions on vaccinations, therapies, theories, etc. Let's just raise our glass and cheers to the wonderful world of parenting children with autism and do the best we can for the community where we belong!

GO AUTISM AWARENESS!

Thank you and good night! 

HELL YAH!!! We will go to the store!

Big pants asked me earlier, "I want to go to the grocery store." Okay, not really asking, but since he has never actually asked a question, I had to go with his intonation. This is how we know he is asking for something. He also asked three times. 

I jumped out of my seat, "What? You asked me for something outside of food and television?" What? You asked to go to a place outside of the zoo and swimming?"

HELL YAH!!! We will go to the store!

After my initial excitement over this novel request tamed, we got ready and headed out. After all, I always have a list. I'm a mom and that's my job :)  In my elated state I did head out in my slippers, but caught that in time and put on different shoes. We headed to Target, on a Saturday afternoon no less. This is what I would call a tiny little chunk of hell on any other Saturday, but today, sure, lets hit it! 

Quick backstory- we used to take the kiddos out to do errands on a regular basis, now we don't do it at all unless we have to. We don't get to spend a ton of time as a family so when we do we would prefer to go to the fore mentioned zoo and YMCA. When I am home alone I cannot take all three kiddos out alone due to safety, elopement and all that jazz. I am lucky enough to have time to shop on my own most of the time. 

I would first like to mention that this is a historical moment for us. Big pants doesn't ask for things outside of his basic wants and needs and once they are met he will not ask another. He doesn't wonder or make statements about things out loud. I am sure he thinks them, but he isn't a sharing kind of guy. So this request, which was paired with his happy dance after I said yes, was an unusual request. Take what you get when you get it, right? 

Well when we got there, I don't really think he knew what he had requested. He grabbed my arm and held on for dear life. He was agitated when we walked in and got our cart. I didn't even make time for my usual Starbucks before shopping. I had to ask him to use his words and tell me what he wanted. He just kept scripting something unknown even louder. I suggested we go look at the Easter candy first and he was sort of okay with that. It took a while, but he calmed slightly. In the meantime, I had a cart full of goodies and yes, I bought them! I had him push the cart and help me make some simple choices to keep him engaged. I had a short list and time to spare. We hit the toy aisle for a new puzzle and the movie aisle for a new DVD. On another note, that Elmo must be a rich guy. He has a DVD on EVERYTHING and I am pretty sure we own them all!

During this time I wondered to myself- why don't we do this more? I typically run errands by myself so when we do go out an about we can do fun stuff. Why can't Target be fun? I know I love it and spend plenty of time and money there. Just as I lost myself in this thought, I remembered why I hate taking him shopping. Waiting in the checkout line. Grrrr... I steered us to one and he pushed the cart the other direction so we kept looking at things. I thought this was a good sign. We came full circle back to the checking lanes and waited in the shortest line. I had my fingers crossed so tight that we would leave the store on a good note. He was loud and moving everywhere he shouldn't, but it was okay. I had him unload our cart and tried to engage him with some questions. He didn't answer me, but he was able to take the items out. I had to remind him to stay by me a million times, but he made it without a meltdown! WOO HOO! Time to celebrate! It is always easier to leave them home and when I have a $300 list I will go alone and get my coffee. On these random Saturdays when I forget a few things or if he ever asks again (I hope he does), it is important to NOT just do what is easy. After 9 years into autism we have gotten a little, dare I say, lazy with doing certain things. It is not okay for me to use the excuse, "it is just easier not to." Well I can use it, but not abuse it, right? 

We talk about teachable moments all the time. Today was a learning moment for mom. Slow down, step out of the easy and try it again. Shopping has been an epic fail in the past and chances are it will be again, but who cares about the stares and go for it!  It was a short trip, full of tons of vocal stimming, toe walking and general autism quirks, but it went well. I don't know if Big pants will ask again, but if he does I am jumping to my feet to hit the aisles again! 

Newsflash!

Let the media frenzy begin! The CDC just announced that 1 in 68 children have autism. Newsflash- too many children have autism! 1 in 88 or 1 in 68. Does it really matter? How much weight could we or should we put into this latest research?

First of all, I have devoured every drop of research available on autism. I am a science nerd. Give me an abstract and an interesting topic and I am going to ask, "what is the sample size?" "who conducted the research?" and "how can they replicate results?" The CDC's 1 in 68 is merely quantifying the results of the age old question- just how many children are on the autism spectrum? 

I gotta say I don't care how many! Frankly, the only right answer is too many! There are too many children with autism. So now that we have that detail out of the way, what are we going to do about it? Here are my top 5 questions related to this topic...

*How are we going to make sure schools have enough resources to educate a population of children with a wide range of skills?
*How can we make sure families have access to  insurance needed to pay for the therapies to help our children on the spectrum?
*When is society going to quit feeling sorry for us and instead accept who we are- families of children with autism? Guess what folks, you cannot catch it and you aren't going to die from it!
*What are we going to do with a generation of soon to be adults on the spectrum? Early intervention is crucial, but life skills and transition into the work force and real world are too.
*Finally, the question closest to my heart... When is the autism community going to quit with the in fighting? I don't care if you vaccinated your children, love or hate Autism Speaks, or whether you prefer thongs to granny panties. For crying out loud, we are all on the same team and even if we don't agree we still need some kind of unity. I have a lot of what I call, "mom friends," but the ones who I also share the autism experience with are a different kind of friend. Not better, just necessary for my sanity!

How do these new statistics help answer these questions?

So, I am glad the CDC made their announcement, now we can all go back to worrying about our children as we were prior to the latest news. In future blogging news... my thoughts on all the in fighting and why I only hate Jenny McCarthy for her bad MTV days. Thanks!

Too much of a good thing...

How much is too much of a good thing? The good thing(s) I refer to are treatments and therapies.

Treatment in all forms and acronyms- Speech, OT, PT, ABA, RDI. SOS feeding, hippotherapy, music and art therapy, pool therapy, the list goes on and on. These are all amazing and reportedly effective therapies to help children with autism, but I am exhausted just thinking about the scheduling. There is no question that the spectrum of therapies to support children with autism are as broad as the autism spectrum itself.

This topic came to me after a recent visit with a new PCA who was over for the initial "meet and greet" as I like to call it. I found myself giving her the rundown of what a typical week looks like and what we were looking for in terms of scheduling. First, we talked about the 5 "big ticket" items- safety& household locks/alarms, food, Dynavox basics, toileting, and the dog :). After we covered the serious stuff, she asked me, "what do the kids like to do? what do they play with?" I gave her the list of what they like to do and followed it up by saying, "when they are home at the end of the day or sometimes during off time on the weekends, we just let them hang out and chill." I kind of gasped to myself when I said that. Did I really just admit that? Did I really just admit that I let them go and wash off their day by bouncing on their yoga balls, swinging, running around anywhere, crawling under blankets, opting out of wearing pants, watching TV, and tuning into the Ipad (sometimes all of these at once!)?  I quit trying to jam in "engaged time" all day long. I haven't given up on them or anything like that. Sure Big pants has homework, but it doesn't take more than a half hour or so each night and Little pants has some things we work on at home to maintain skills. We have activities we like to do together and plenty of things to practice for maintaining and generalizing what they learn during their day. There is plenty to do to keep this train on it's tracks on any given day.

Anyway, back to my "gasp." Seriously, after almost a decade on this roller coaster ride I am still wondering if we are doing enough? I guess this is an insecurity I still harbor.  I thought by now this kind of thinking should be settled.

Of course issues will pop as they grow, but I cannot imagine adding anything else without a true need arising. At this point, any more time committed to therapy is taking away from our family balance and that is no way to live. These two spend more time in therapy and school than our other child and they even go to school more days than my full time teacher contract yields. They work really hard all day and at the end of the day they need to retreat and frankly- stim! We hear so much how we need to keep these kids engaged and busy to "keep them in our world." How much is really too much? I have come to believe they need some time to turn off and tune out. Their neurotypical sister is allowed time to just zone out and do what she wants, so why shouldn't the other two?

The value of the ABA therapy, as well as the speech and OT they currently receive is more than I can express. Art and basketball on the weekends is amazing as well. I love the way the therapies intertwine throughout their day so really they work on things all day long. This is programming that makes me smile. I am so grateful for all of it.

The final question I must remind myself (to avoid future "gasps")- is adding on more really going to do more? How much is too much? Is too much now, going to mean we need less later? No crystal ball answers here, so in the meantime, I need to remind myself to go with my gut and realize these kiddos work hard and they need to play (or stim) hard too! Life is too short to cram if full of therapy all day!

Our Story...

Mama pants bio- I am married with 3 children (two with autism) and am an early childhood special education teacher. Yep, I am immersed in disability 24/7 and it works for me. I do have a middle child (sissy pants), my neurotypical angel, and she makes sure I have some balance in my parenting!  This is my normal. To escape the stress I love to cook, run and drink wine! I am married to my best friend (hubby pants) and am so grateful that he is holding my hand through this crazy life. We are a good pair! 

We began our journey into autism just over 9 years ago with the diagnosis of my oldest child (big pants). His early signs that stuck out the most were his lack of communication and his repetitive behaviors (hand flapping and tip toe dancing). He did not make many sounds and did not develop language in a typical fashion. His first word was "mom" but it wasn't functional. His first sign of any functional communication was when he starting using the sign for "more." What a blessing that was! It was sad, but deep down inside since he was just a baby my instincts were telling me something was wrong. As a special education teacher and ABA therapist I knew something wasn't "right" and it didn't take me long to figure out he had autism. It was sad and challenging just like all autism moms share. I think the hardest part for me was that so many people close to me just assumed that I would know what to do and make everything okay. In a way that took away from my own grieving. Yes, as a teacher with a great deal of experience with autism I know how to "educate," but it never gave me the opportunity to grieve like a "mom". I wear two hats, teacher and mom and it was a tough balance at times. At the time of diagnosis, we were living in an area where there wasn't much to offer in the way of services so we moved when I was 5 months pregnant.  Our family thought we were nuts since it was a huge financial drain and we were moving away from our support system, but it was the best decision we could have ever made (they all agree now too). Now he is 12 and doing very well. He is my gentle giant. His smile is big and bright and his hugs make my day. 

Our daughter (little pants) was diagnosed 6 years ago and that was more of a blow for me. When big pants was going through his evaluations and we were seeking a diagnosis I found out I was pregnant (talk about bad timing). I had read all of the research that said siblings have a greater chance of having autism when there is already one diagnosis. I clung to the hope that we would not be a part of this statistic. When we found out we were having a girl, I thought, "whew" more boys than girls have autism so maybe we really will dodge the bullet of having two on the spectrum. It didn't take too long- at the age of 18 months I knew what was going on and I cried my eyes out. This was almost more devastating to me as I was already knee deep in the chaos autism brings into one's life and I wasn't ready to start over with my little baby girl. On the plus side, we were already immersed into a system of therapy and education that was working well so we were able to plug her in and individualize for her needs. She is the sweetest thing and we are lucky that she is as affectionate as her brother. Her giggle and other idiosyncratic sounds are music to my ears. 

Along the way we have tried just about every therapy, supplement, diet, snake oil and educational program we have had access too. Looking back I shake my head at some of the things we have tried like sending poop in the mail for analysis! Oh my gosh in writing it cracks me up! All of these stops along the way were necessary though. We needed to weed through it all to find what worked for us. We followed our instincts and I wouldn't change any of the things we tried,  as they were all important pieces to the puzzle (pardon the pun). We have blazed our own trail in many ways, as we eventually took our children out of the public school system (just not our cup of tea). Don't get me wrong, our school is great, but it just doesn't have the resources we are looking for. It is kind of a conflict of interest at times since I am a special education teacher. We are settled now into a program that provides ABA (applied behavior analysis) therapy for both kiddos. Big pants attends a private school just for children on the autism spectrum and he receives his academics, ABA, and speech therapy there. He even plays basketball on the school's team. Go Eagles! He also goes to art therapy on Saturdays and we are huge fans our local YMCA where we are always welcome! Little pants receives services through the same organization, but she attends a center based program where she receives her ABA, speech and occupational therapy. She will attend the same school as big pants someday, but she isn't quite ready yet. Little pants needs a Dynavox to communicate as she has so much to say, but doesn't have the expressive communication to get it out. The Dynavox has really opened up her world. That is a post of it's own. 

The title of my blog, comes from the fact that big and little pants prefer to never wear pants. Crazy, but true. Thank goodness they wear them in public, but when they get home all bets are off.  "Where's your pants?" and "Go and get your pants!" are phrases bouncing off of our walls each and every day more times than I can count. It seemed like an appropriate title for our story.

I could go on and on, but will save the rest for separate posts. This is just the Reader's Digest version of our story. More to come...

The sweet sounds of scripting

Ahhh... the sweet sounds of scripting.

Scripting is so common with children on the spectrum and with big pants it is non stop! When he first started talking it was all scripting. Of course we did not realize it at the time, but it didn't take too long to figure it out. The same phrase over and over. It doesn't take long to do the math and carry the 1 there!

Some of the more popular ones include....

"Do you see a clue?"
"How do you tickle my feet?"
"Squirrel jokes" (drag out the /r/ in squirrel)
"How do you ride a bike?"
"Magenta's coming over"
"Elmo has mail"

The ones that almost seem functional...

"Feliz Navidad, Merry Christmas everyone!" (only when it snows and in Minnesota this can be in May!)
"Goodbye Grandma" (only said when leaving school and witnessing everyone saying goodbye)

Many speech pathologists and other therapists have said that we shouldn't engage with this type of communication. It was explained that if we respond it encourages communication that isn't truly conversational and that it may just reinforce more scripting in place of more functional language. Yah, yah, yah, I get it, but what if that is the only reciprocal language we receive outside of,"more cereal please" or "want Bob the Builder"?

Human nature and motherhood thrive on the back and forth nature of conversation. If this is the only way I can get my son to talk to me in a reciprocal manner then you are damn right I am going to say, "A clue? Where did you see a clue?" or "Magenta's coming over. That will be fun." I know he isn't going to answer back in a way that most would consider typical, but as a mother I want some back and forth. I don't care what it is. This is where my heart outwits logic. I know that it is scripting, but a mom can dream, right?

Triage mode

I use the phrase "triage mode" all the time when referring to how we manage our challenges. I used to panic about how to tackle everything at once. How I would keep the house clean, sleep, go to every therapy available (they will fix them, right?), sleep, cook dinner (and keep it healthy), sleep, read every book on autism, sleep, go to support groups, and just raise my daughter who isn't on the spectrum. We have definitely found our groove and I credit that to triage! 

I will break down Merriam Webster's definition "pants style"- 

Full Definition of TRIAGE credited to http://www.merriam-webster.com/dictionary/triage

1

a :  the sorting of and allocation of treatment to patients and especially battle and disaster victims according to a system of priorities designed to maximize the number of survivors 

       *we will sort the laundry by dirty and clean and it probably won't get folded until we need to wear it again. We will treat toileting accidents as they come and make sure to have diapers and waterproof hardwood floors, and finally take a deep breath and hold on (glass of wine in hand)!  

b :  the sorting of patients (as in an emergency room) according to the urgency of their need for care

       * we will sort through the massive amounts of therapies and treatments for autism available and do what works for us. Do we really need to try it just because it is available? If only I asked myself this in the beginning as we have tried just about everything. Glad we went through this journey of snake oil, supplements, doctors, and research to find what fits for our kiddos. 

2

:  the assigning of priority order to projects on the basis of where funds and other resources can be best used, are most needed, or are most likely to achieve success

       *autism is expensive and I will do what we can to make it all work and somehow find time to go to concerts and dinner with hubby pants. In the meantime I will be proud of the life we have built and do my best to keep things copasetic! 

I would be lying if I said I wasn't stressed sometimes. These days I am just a little more focused on what is truly important without worrying about our original plans that were in place when we started our family. I have learned to deal with things with as much patience that a lack of sleep and coffee will allow and a sense of humor too. 

Home alone

When it is just me at home with big and little pants, I realize how silent and lonely it can be and how much I crave conversation. Here's the deal- neither one of them has anything more than functional communication (and big pants' scripting) so we have no true conversation. They don't even talk to each other, which on a positive note, means no fighting. In addition, they only ask for what they want, which is primarily food and movies. It is a weird dynamic. Not bad, just different. It is not lonely in the physical sense. In fact, I like my alone time with them. We play and have fun, but it is mostly directed by me and their attention span can be short. In all honesty, they prefer to be alone at home a lot of the time. They work so hard all day at school and therapy so when they get home they need their time to unwind and retreat in their world for a while. I respect that because they work harder than I do everyday. They keep busy and happy and I am grateful for their laughter even though most of the time I have no idea what they are giggling at. I guess hubby pants and I are doing something right!

This kind of silence is deafening at times and I mean that literally- these two can be so loud! When there is no one to talk to I can hear everything and realize how noisy our house can truly be. I hear them jumping on their beds (yep- that one still flies right now), making their self stimming noises, laughing, jumping on the hardwood floor and sometimes banging on the walls or tapping the windows. In addition, I can hear endless Sesame Street songs and "Mighty Bee" episodes on the Ipad. I wonder what the neighbors think when the windows are open? Who would ever think that two kids with nothing more than functional communication (and one of them using a Dynavox to talk) could be so noisy?

One thing is for sure, when we are home alone, the loudest and most frequent sound of all is my voice carrying the every repetitive, "where's your pants?"

Just another day in the life and I wouldn't do anything different!

A letter to my neurotypical angel

Dear daughter of mine-

Just like your brother and sister, I cried when you were born and continue each and every day to wish you all of the success and happiness life could possibly offer.I stroked your hair during midnight feedings, kissed your "owies" and eased your fears when you were scared. I have also scolded you for misbehaving, reminded you to listen to your teachers and be a good student.  I have not grieved over a diagnosis for you, raised money to walk for your cause, or fought for services and therapy on your behalf.

Have I done enough for you? Will I ever be able to match the struggle? I know I shouldn't compare. I love you all the same, but I feel guilty somehow that I haven't had to work so hard to make you the shining star that you have become on your own. At the age of 10, you have dealt with more ups and downs than most adults will ever experience in a lifetime. Your compassion for others outweighs most and your love for your siblings is inspiring. At times I wish every child your age could spend a week in your shoes and learn from it. I think this would help to raise a generation of tender individuals.

I love the way you help your siblings put on their shoes (and pants), help them with their feeding therapies, hold their hand on the way to the car, cheer for them when they use the bathroom instead of having an accident, and explain autism to the random strangers staring at us in Target. I am proud of the fact that you are not embarrassed by the fact that your brother and sister make loud noises in public, wear diapers at times, and choose not to wear pants on a regular basis. I love the way you get mad at your father and I when we conquer and divide activities since you want us to do things as a family. I admire your perseverance with constantly insisting on family dinners even when we eat separately to make our lives easier at times. I long for your optimism regarding a future family vacation where we fly on a plane and wish I could make some of the stress of this life disappear for you.

My dear, sweet neurotypical angel, I only wish you the best with everything you do and wish I had the strength and heart you show each and every day. I can only sit with my fingers forever crossed that you don't run away and never return when you grow up. I am not sure that I would blame you on some days. You are well on your way to becoming one of the most amazing individuals life could ever deliver. You have learned so much empathy from our life and show me everyday reasons to be proud of you. I worry that you will be bitter as we have not been able to provide for you the same as many of your peers. We have had to separate so many experiences to ensure that you don't miss out and I sincerely hope these were the right choices. I don't want you to feel sorry for yourself because of our autism lifestyle, but instead embrace our challenges and see what a better person you have become for making it work. I really don't have to hope for this as I witness you prove your "ausomeness" daily.

Thank you my darling daughter, you have taught me so much. May the world be your oyster and you cash in on the largest pearl available. I cannot think of anyone who deserves it more.

Love, Mom

A Positive Spin...

So we have been on this autism roller coaster for 9 years and counting. I look back at the first years with big pants and his diagnosis and then a few years later with little pants and the sad news that yep- we have two on the specturm! Sheesh- who drew the short straw?

Now after almost a decade into this, I see things differently. Things are still tough and I still get emotional at times. Hey, that is what a lack of sleep and daily worry bring, right? What I have learned though is how to put a positive spin on things and try to come at this crazy, chaotic life with a sense of humor. After all no one ever died from autism and frankly, life could be a lot worse.

Here is my top 5 list of positive spins, silver linings, glasses half full and every other cliche I can think of...

1. Empty nest syndrome: I see so many people I love dearly struggle as there kiddos go to college and start a new life. Pretty sure that will never be us. Big and little pants will be with us forever!

2. Sibling relationship: My sweet neurotypical pants doesn't know what life is like without autism and will never have the experience of having a NT sibling. I say perk- no fighting over who sits in the front seat on the way to Target and no fighting over who gets the last piece of pizza. Big and little pants don't have the communication skills to argue about such things- yet!

3. Family holidays: I don't know about the rest of you, but there have been plenty of holidays where I dreaded the extended family gathering and hated giving up my vacation time to travel there. Now, I can opt out with a great reason to do so- autism. Yep, I said it, I played the autism card. May as well, right? Now I host the holidays and anyone that is able to handle the pants family is welcome to come. I love to cook and am happy to host- on my turf though.

4. School: 3 kids, 3 schools/therapy programs, in 3 different cities, in 3 different counties even. Whew- I am tired reading that, but I am thrilled that I have the option to do so and I don't have to settle for programming that doesn't meet my kiddos needs. The positive spin here is that I have the choice and am grateful that we can accommodate that. I may not always see this though, especially during this horrible Minnesota winter we have had.

5. Smooching my boy: I don't know too many 12 year old boys who still want to hold their mom's hand or kiss and hug them in public. Thanks big pants. This is one of my favorite perks!

Three kids, three counties, three different schools

"525,600 minutes, 525,000 moments so dear. 525,600 minutes - how do you measure,

measure a year? In daylights, in sunsets, in midnights, in cups of coffee. In
inches, in miles, in laughter, in strife. In 525,600 minutes - how do you
measure a year in the life? How about love? How about love? How about love? Measure in love. Seasons of
love." 

For all of you theater lovers these lyrics are familiar, for those who aren't, they are from Rent's, "Seasons of Love." Lyrically, these numbers represent the minutes spent driving the obscene number of miles we travel each and every day to make sure we get to work and personally transport our children to their schools and therapy. I will never complain (at least not too much) about the drive as the services and schools are priceless. I do look forward to only having two locations to drive to in the next year or so, but I can see the light at the end of the tunnel and will then look back on all of this as a traffic fueled haze that I will never regret. We CHOSE this option and feel lucky that we have the opportunity to make this choice. Our own school district sadly doesn't deliver the services and resources we seek for our children so we had to look elsewhere. Although it is a lot of driving and stressful time on busy city highways (especially in a Minnesota winter) I cannot imagine doing anything different. 

So how do you measure a year in the life and subsequently cleaning the millions of goldfish crackers out of their car seats? I measure it in seasons of love...