I am thankful...

'Tis the season to be thankful. 

Although parenting two children with autism is challenging, I am thankful for their health and happiness the same way I would if there was no diagnosis. Parenting is challenging, but I can only imagine how hard it is to be them and struggle with the things that come so naturally for us.

I am thankful that our journey has taught me to be grateful for each day and celebrate the milestones they work so hard to achieve. Trying new foods and tolerating loud noises is a daily challenge for them both and when they are still smiling at the end of each day, I am beaming with pride and hope for more successes to come. Overcoming the sensory overload must be exhausting and confusing for them at times. When this leads to a need for tickles and hugs, I find a lump in my throat as I hang on tight. I am grateful they can seek out what they need. They have never said, "I love you," but I cherish the moments when my son says,"Lay down please," which is his way of saying, " sit by me." I will play the "stinky foot game" as long as my daughter likes and her laughter is infectious. Sure it's considered a baby or toddler game, but when my 9 year old sticks her feet in my face with a smile, I will always comply. These moments are fleeting and I am grateful for them all. 

I am grateful for not only their developmental success, but also for the lessons I have learned. I don't know that I would appreciate the little things in life if we didn't have the challenges autism has thrown our way. 

As I always say, we measure success in smiles and laughter and I am grateful for the abundance we have! 

Back to school? What is that?

This is such an odd time of year at my house. With one child in public school and me being a teacher I get the back to school craze and change of season.

As for the other kiddos, people frequently ask, "Where do they go to school?" or "What grade is he/she in?" They are common questions and milestones we all celebrate, right? Not so much I pulled these kiddos out of public school a long time ago and they attend a full time ABA/Skills Development Program which follows a year round calendar. We don't have 6th grade graduations or school supply shopping. They don't care about the letter that comes in the mail explaining what room you will be in next year and who your teacher is. They don't go shopping for school clothes or a new backpack. We just get what they need as they need it. In fact that is kind of freeing in some ways.

For my ASD angels, we have annual evaluations and meetings to go over goals every 90 days. I love this programming and would never change a thing about my life, but while everyone else is either doing cartwheels as their kids head off to the first day of school or crying as their kindergartner gets on the bus for the first time,  it is bittersweet in my house. One more milestone we won't celebrate. We have plenty of things to cheer about as I have written about many times- we measure our life in terms of progress and smiles. Read more here: http://wheresyourpantsautism.blogspot.com/2014/04/how-do-you-measure-progress.html

I followed my other daughter's bus all the way to her first day and took pictures as she happily skipped into school. For the other two we drive an hour one way just to get them where they need to be. Again, I love this programming and wouldn't trade it for anything in the world, but this time of year tugs at my heart strings. We have worked hard to pave our own way to make sure my kids all have an opportunity to learn and meet their maximum potential and remain happy.  They don't even have IEP's so I don't have that frustration that I read and sympathize with when I peruse the posts by my fellow autism parent bloggers.

It isn't bad, just weird. I guess that sums it up. I have never been the kind of person who easily fits into one sterotype so I guess this seems like the right path for us. Why do "back to school" like everyone else right?

PS- I still have drawers of school supplies. I cannot help it. I love a new pencil and notebook!

New beginnings

We dropped the kiddos off at their new center. Bittersweet for so many reasons...

This shift changes the road ahead for them both and it is for the better. Our therapy focus has shifted and so has our family and future focus. While I am grateful for the new opportunity and will forever consider us blessed to be involved with the program we have them enrolled, in many ways we are saying farewell to the expectations and path we thought was paved. I am someone who likes and embraces change, but I find some more difficult than others.

I have learned to roll with it. Autism is a spectrum and so are the related adventures. We just finished spending a wonderful holiday weekend as a family and now we start things fresh. 

Goodbyes are tough. I suck at them. Oh well... Keep going.

Cheers to my favorite autism daddy!

A quick post about my favorite autism daddy-

Thanks for being by my side for almost 14 years and staying strong during this roller coaster ride. Things have not always been perfect and at times the lows have been really low. I am glad we have stuck together. This road would be much more rocky and not as much fun if we let our struggles get the best of us.

Thanks for helping clean up poop, get up with the kids at night, laugh when the kids run around naked and sometimes throw their food across the kitchen. I am glad we can find ways to laugh at things that others would find stressful. Our children (and I) are grateful that you are such a hands on dad. You were before autism and still are. That is something to be proud of- many dads would just give up.

Thanks for letting me cry when things get tough and my exhaustion gets the best of me. Thanks for being vulnerable too. It takes a real man to dig in and be an autism dad and not just take the back seat while I clean up the messes.

Thanks for being my friend, partner and love of my life. We have made some hairy decisions over the year, but have really come out on top. We have blazed our own trail and there isn't anyone else I would rather travel through life.

Now go eat your breakfast and enjoy a coffee. Cheers!

*boom* she drops the microphone :)

Where's your pants? and other things parents of children with autism say...: More than words can say...

Where's your pants? and other things parents of children with autism say...: More than words can say...: My little girl will be 9 in the fall. Her curly hair and beautiful smile is as gorgeous and sweet as the day she was born. Her boundless ene...

More than words can say...

My little girl will be 9 in the fall. Her curly hair and beautiful smile is as gorgeous and sweet as the day she was born. Her boundless energy is as exhausting as it is inspiring.

She has grown so much and I am proud of everything she has overcome as a nonverbal child with autism. Her expressions and volume of howling, screaming, vocal stims, and other random noises tell a story, but I will always wonder, "what if she could tell me?"

She makes everyday bright in her own special way. She has never said, "I love you" or "I need you mommy," but she shows me in her own way. When she squeezes my arm and buries her face in it, I know this is her way of showing me love (and also a nice sensory fix for her). She will grab my hand and pull me to the couch or her bed just to sit by her. My heart soars in these moments. This is a way that SHE is initiating and engaging with me. Those of you with children with autism can appreciate the moments when our children reach out to us instead of us always having to pull them out of their autism into our world. When I ask for a kiss she leans in enough to just give me the top of her head. I will say, "lips please." Most of the time she will tilt her head up so I can give her a kiss on the lips or cheek, which I know is not her preference. These moments are precious and I cherish each and every one of them.

She has so much to tell us. More than even words can say.  Thank you Dynavox for giving my angel a voice, even if sometimes she is just flat out talking back. I love that she can say, "no" and "please." That she can ask for what she wants instead of me giving her choices that may not even be close to what she really wants. I am grateful her big sister is able to manipulate the buttons on her device so she can participate with her communication success. Of course, on her birthday she made a button that said, "It is my birthday. Have a sucker or I will punch you in the face." Sister humor! We deleted it, but it was funny. I love that when I say, "go and get your words" she knows exactly what to do. I appreciate her persistence with hitting the same button/request over and over again even after I have already said, "no." See example here- https://www.facebook.com/photo.php?v=504593996313711&l=7394803661349044850.

For years she used PECS to communicate and those pictures were one of the greatest tools we have used to open up her world. With her Dynavox she has so many more options. We are just beginning to unlock all of the ways we can use it. I think I am the most grateful for the decrease in frustration. She used to get so mad and sometimes even cry when we didn't understand. Now she just gets mad when we say she cannot have candy for breakfast!

So for those of you who have children that can say, " I love you" or "help me" or have any sort of conversation at all- count your blessings. The struggles related to our communication barrier isn't about us as parents, it is about how hard it is for her to express herself and join in with others. Autism is already full of challenges, being non verbal complicates things on a whole different level.

A shift in thinking- thoughts from a mom heading into a new place in life.

With two children on the end of the spectrum where verbal skills are minimal and using the bathroom independently is a never ending battle, progress is bittersweet at times. I hear so much about parents who are new to this adventure and they seem to be struggling with the same things we are STILL working on a decade later. I do truly measure my angels progress in much more than test scores and age equivalents (http://wheresyourpantsautism.blogspot.com/2014/04/how-do-you-measure-progress.html), but now that we are closer to adulthood than toddlerhood I am starting to look at things differently.

My 12 year old is entering puberty and still watches Sesame Street and Blues Clues. For crying out loud, he masterbates and needs deodorant, but still needs to hold my hand at all times to ensure safety. My 9 year old still doesn't talk, although she is a wizard with her Dynavox. For years people have been telling me, "I heard of this one child who started talking at age____." I think this ship may have sailed on our end of the spectrum. I am not sitting in "woe as me" land and I am not in a fit of depression about where they are at developmentally. I just see a huge shift in my thinking about what is important and what we need to do to make sure they are as independent and happy as they can be. I am thinking about the skills they need to read and write at a functional level and to make sure they can work with money at some point (or at least understand the concept of spending.) I want to make sure they can tell someone their name and address (or at least our phone number.) I don't care if they know state capitals or can name our first president. They don't need to learn proper grammar, but instead how to ask for what they need in a way everyone can understand. They need to know how to clean their dishes and make their own sandwich. Maybe even use a microwave so they can warm their food. I still think the sky is the limit in terms of the progress to be made, we are just on a different path.

I find myself researching places like Juniper Hills or life skills colleges instead of early intervention and new services. I don't go to every conference related to autism and don't read every book available. I prefer to read stories of those farther along on this journey than we are. What do you do with a teenager with autism? I like those stories. They are few and far between really. So much focus is on the little ones and early intervention. This is important, in fact crucial as the rate of diagnosis soars. I think I am simply saying goodbye to this stage of life. I am future bound instead of fix it bound. It is a good place to be. I think I am getting used to it here.

A sense of community in an unusual place

I recently started to blog again and this time added the Facebook page/Twitter account component. I thought it would be a great outlet to laugh, celebrate and complain about things most of my friends, coworkers and family cannot understand or relate to.

The one thing I wasn't expecting was to find such a sense of community. I am not always the most social person. I don't like girls night outs, book clubs, luncheon pot lucks at work, neighborhood gatherings, etc. For a good time I enjoy a long run (alone) or a night out with my husband enjoying a great dinner or a concert. I have great friends, but I like to keep my circle small. I like to chat when I am at the gym, school, or other social events, but I really don't want to share in small talk or the other conversations as much as everyone else seems to. There is nothing wrong with any of the above, but they are really just not my thing and they never have been. I am happy with things the way they are as it is the quality, not quantity of conversations and people that matter.

With that being said, the sense of community found while creating this new blog and Facebook page has been surprisingly gratifying in a way I did not expect. I am laughing at the fact that other folks know as much about poop as I do, laugh at the fact their children prefer not to wear clothes, and are equally as sleep deprived as I. I knew this writing and sharing would be cathartic for me, but I didn't think that I would relish the recurring visitors, nor would frequent the same pages I so enjoy. I have never been a big Facebook person who posts pictures of their food or tells about every moment of their day, but I have posted more on my page in the last month than I have on my personal page since it began.

My interest started by reading what other people post and write about. I have always enjoyed following others- Effin' Autism, Autism Hippie, Autism with a side of fries, Autism Daddy and Mutha Lovin' Autism are a few of my favorites. I like them all for different reasons whether I agree with what they say or not. The authors of these pages/blogs are a part of a very important community that I have started to hold near and dear.

I used to go to a support group or two and they were wonderful. I have many cherished friendships that have developed as a result. They are fantastic and I am grateful to have some autism moms on my local team. This virtual support is equally valuable and I am glad I have arrived. A little late to the party, but better than not coming at all.

Gotta go, I have another naked kiddo to chase down!

It's only a season...

Many times in life my father has told me, "It's only a season." He said this as a teen when I was sad over a boy. He said this when I was in college and stressed out over homework and grades. He said this when I moved to Arizona on a whim in my early 20's and changed my mind. He said this when I was indecisive over changing college majors. He said this when my son was diagnosed with autism and again when my daughter was. He said this many times over the years when I experienced difficult times in life, money, family and other troubles. 

Great advice that I didn't always receive well. There were moments when it angered me as much as the phrases, "God only gives you what you can handle," "it's all relative" or "it could be worse." 

I had a moment today on my drive home where for the first time in my almost 39 years where I said this phrase to myself. This has been a tough week at our house. We received some news about our children's progress and placement change. We have had some financial issues that require attention and a few more things that make the phrase, "when it rains it pours" sadly applicable. 

I am sad. My husband is sad. I have been crying off and on for a few days now. I need this down time. I deserve this down time. I never truly grieved when our children were diagnosed. I was upset, but was immediately hoisted into the drivers seat to blaze our trail. I did it with gusto and don't have any regrets, but now is a time when I (we) need to regroup. 

We didn't chose autism, but we made the decision to take on the therapies, driving and all the effort it takes to ensure the best for our children. We could settle for less as it would be so much easier, but that has never been an option for my husband and I. We will drive anywhere and jump through any hoops necessary if it helps our children. I am not willing to put effort into therapies, schools or strategies that don't yield success, but this next phase in life is a good option. It is just change that has an enormous impact on every aspect of our lives.  I am sad my son needs to take a step back to maximize his learning, but it is okay. I want him to be as strong and happy as he can no matter where that level is. As for my daughter, this is a good change for her as well. I am grateful for a program that can meet both of their needs and individualize strategies to cater to each of their strengths. 

This change is going to present some huge challenges and I doubt I am done crying. This will be a test for our family. I guess I need to remember those words my father will certainly say when I tell him what is going on, "It's only a season." Maybe I should do my best to shift my emotion from sadness and frustration to relief and perhaps happiness if we weather the storm when it is over. 

I think it may be time for me to try and embrace the concept I have heard a million times, "It is only a season." This is just a shift, not a big move. I don't need to be the annoying voice saying, "there is always a silver lining," but I think it is time to look at this as a "season". I don't know if I need my umbrella or snow boots, but I am in. Totally and completely in. Let the adventure begin! 

How do you measure progress?

How do you measure progress? How do you quantify success?

To even obtain a diagnosis you have to go through a great deal of evaluations and measures of performance. It just is what it is and we need to go through this to get services much of the time. It is an overwhelming process that can make one feel as though they are swimming upstream in a sea of chaos. Test scores, ranges of average, eligible scores, etc. The list goes on and on and the numbers can make your head spin.

I am a special education teacher and I am immersed in evaluations and outcome measures all day long. Refer, test, report, repeat. Great families, amazing kids and wonderful co-workers.  That is my teacher hat and I love it!

At home, when I put on my autism mommy sombrero things look a little different. I am on the opposite side of the table listening to others quantify success and measure progress with test scores. Both of the kids go through an annual testing process that involves many standardized checklists and evaluations. In addition, every 90 days the team meets to go over the Individual Treatment Plan where we review progress and add/adjust outcomes. It is nice that I have a say in what is worked on and this breaks down to many hours spent in meetings. It is NEVER stressful and I am grateful that I have a voice in the plan and that they help us make sure we have some maintenance and generalization at home.

I was never surprised by either of my children's autism diagnosis. I knew it in my gut long before the reports were written. On the other hand, I will never forget the first time a psychologist explained to me that not only does my son have an autism spectrum disorder (299.00 in the DSM), but also the axis II diagnosis of mental retardation (318.00 in the DSM). I immediately burst in to tears and told them to continue as I wiped my eyes. It wasn't his delivery, he was just doing his job. I wasn't even surprised. It just stings...

After 9 years of these evaluations, diagnostic criteria, measures of skills met and age levels of performance, I really don't care. I am not woe as me in my corner focused on the news delivered. I am not shaken up by the fact that my 8 year old has the verbal skills of an infant or that my 12 year old writes like a preschooler. Neither one is toilet trained and frankly they are both very globally delayed.

We look at progress differently. It is not all about numbers.

My daughter uses a Dynavox to talk now. One of my favorite memories was when she used her "words" (this is what we call her Dynavox) at the pediatrician's office. When the doctor came in to say "hi" and I told her to say "hi" back, she didn't push the "hello" button. Instead, she hit the "goodbye" button and pushed him away. She did not want to be there and she made sure we knew that. The two of us laughed and appreciated her sassiness. That's my girl!

My son has become so good at requesting items that he can string together 5-7 words to ask for McDonald's or a cookie. This was a child who couldn't do anything but use the sign for "more" at the age of 3. He can now say, "I want McDonalds." We will say "no" and he will say, "I want yellow McDonalds please." We still say "no" and he says, "I want more yellow McDonalds fries please." At this point we often cave. Way to go buddy!

I understand that we need the numbers to get services and to maintain funding and that is fine. I am not sad, they are always better than the year before and that is grand.

Our normal measures progress in smiles and laughter and we have an abundance of that in our household. Life is pretty good. Celebrate the little things...

I'M MAYOR OF THIS TOWN!

"I'M MAYOR OF THIS TOWN!"

I will never forget the first time those words came out of my mouth. It was about 4 years ago when we were doing at home ABA with Little pants and I was having a disagreement with our lead therapist over finding some balance with ABA and keeping her in the ECSE placement part time. I was confident that she needed both and they could be successful as long as I was facilitating the communication between the two and making sure they supplemented one another. The school was ready to serve and was recommending more days of class. The lead ABA therapist was hell bent on only participating in their programming. Both sides forgot that we still had private occupational and speech therapy, but both sides were truly rooting for my daughter. They just forgot that sometimes there is more than one party involved. As a teacher, I see this happen a lot. No one side is bad. It just boils down to philosophical differences.

"I AM MAYOR OF THIS TOWN!" I screamed over the phone to the lead therapist when I was explaining why this was the road we WERE in fact going to take. Seriously, was I going to listen to someone question my parenting choices and tell me how to educate and treat my child's autism? Was I going to listen to this head strong therapist, who wasn't even a parent (nevertheless a parent of a child with autism), tell me that maybe my parenting styles just don't match my child's needs?

Hell no! I AM MAYOR OF THIS TOWN!

To make this long story short, I took the issue to the clinical supervisors who were happy to listen to how I wanted to do things and at the end of the day we kept Little pants in her school program. Her ECSE teacher and speech therapist came to my house to observe therapy (and brought me a Starbucks!). Both sides were curious of what the other was teaching and at the end of the day it worked out. I only kept her in ECSE programming for a couple years and I have no regrets. We now have a combination of ABA, speech therapy, occupational therapy and education all in one through the ABA therapy program. We chose to take both of our children with autism out of the public school system for a variety of reasons, but that is another blog all together.

I think that the relationship between the public school system and ABA service providers has improved some over the years, but back then there were some individuals on both ends that just couldn't see the forest through the trees about why an eclectic approach was best for my little girl.  They both just didn't completely understand what the other was about and how they can benefit children. I get it, ABA isn't what you do at school and vise versa. I have heard it a million times and by the way, I was an ABA therapist in college and a special education teacher by trade. Sheesh- if anyone gets it, I am pretty sure I do! I really think the push from the lead therapist at the time was coming out of ignorance for what the school was actually providing. I really don't think that the two half days a week I was planning on keep my daughter at school was going to inhibit any progress in ABA. At the end of the day I was right! Little pants flourished in both settings.

Here's the thing- autism is a spectrum disorder, so why wouldn't I utilize a spectrum of therapies to treat the issues?

I would like to point out that this was one small hiccup with the ABA service provider we have. They are AMAZING and I am grateful for everything they have done. This error was on behalf of the individual therapist only and she no longer works for their organization.

I have always been comfortable standing up for what I think is right and have never feared trying new things. Advocating for my children is no different, but when the going gets tough and you are in those first years of diagnosis and early intervention, one's confidence can be low. The combination of grief and mommy guilt can wear on even the most confident of souls.

What I have learned from this is simple- I know what is best for my kiddos. I don't need to follow the same path as other parents or do what everyone else suggests. I have my own instincts that make me a very formidable mayor and I will scream it at the top of my lungs any time I need to do so.

I AM MAYOR OF THIS TOWN! Don't question the choices I make for my children or suggest I do it any other way. No one knows what is best for them as much as I do. You can be an expert on anything you want, but don't you dare tell me you are an expert on my children.

Disclaimer- my husband has had an equal voice and we have always agreed. He just isn't as vocal. :)

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...

Finally getting some zzzz's....

Many children with autism have sleep issues. This is not headline news. Some have trouble getting to sleep, others staying asleep, and some who are just up all night! Both big and little pants have had difficulty with sleep. I liken it to having a newborn baby for 10 years since we were getting up every 2-3 hours between the two of them before we found something that worked! It has only been in the last year that I finally think we have a handle on things. Now what I consider successful is vastly different from what I would expect from a child without autism, but hey I will take what I can get. Just this morning, little pants woke up wanting me to do a 100 piece puzzle with her at 4 am. When I heard her yelling, I looked at the clock and thought, "sweet, she slept all night again." 4 am a positive thing- really! I must be crazy right? Digging a little deeper though, this is a huge success. She used to wake up anywhere from 3-5 times per night and sometimes never even go back to sleep. This would happen at least 4-5 times a week. She wasn't always happy either, which then leads to her yelling and howling that is just loud enough to wake up every other person in our house. We tried different medications and she had harsh side effects. We tried melatonin, which would work for a while, but it was as though she built some kind of odd immunity to it and then it wouldn't work anymore. We also tried to just wear her out every day.  None of these things worked. We saw a few doctors and although they had good suggestions, we couldn't crack the code. We finally got a referral to a pediatric sleep specialist and he had me keep a sleep journal, which I had done before. I am a journaling master. With a non verbal child you become a keen observer of everything from food to poop to behaviors since this is the only way you can really get where they are at and what patterns develop. We kept this journal for 6 weeks and then returned for another visit. His advice at this point is almost hard to admit. He suggested we just keep her up as late as possible and try to consolidate her sleep. Some kids with autism just don't need to sleep as much and little pants seems to fit that bill. Sheesh- why didn't I think of that! I wrote my masters paper on sleep disorders in children with autism. In fact, I got much of my writing done while I was up all night entertaining my own autism angels. Oh boy! My mom brain just could not wrap my mind around allowing a 7 year old to stay up until 10 or 11 pm, especially when she would be tired around 8 pm. That would make me a bad mom right? In almost every one of the books published on how to raise children, they all say getting enough sleep and having a consistent bedtime is a benchmark for success. A 7 year old child certainly shouldn't be up that late, right? Silly me- what the hell am I doing trying to apply these guidelines to my children who have never followed any kind of typical path. Trying to put a square peg into a round hole never works. It was kind of an "a-ha/duh moment" at the same time. With that being said, we went through a few weeks of hell trying to get her to make it 'til 10 or 11 pm. and continued with our sleep journal and by golly she started having some consistent sleep patterns of about 6 hours of sleep per night. I guess if this is all she needs, who am I to argue? She is happier (frankly we all are) and this is our routine. She sleeps well most of the time although she is a consistently early riser. About one time a week she has a rough night, but since we are a little more well rested it is easier to manage. This process took us years to figure out and it has been working for about 8 months. As for big pants, well he didn't sleep well either. Now he takes 1 mg of guanfacine at night and sleeps like an angel, unless of course it a night of little pants howling. That makes us all on edge. We tried melatonin with him too, then guanfacine when he was 7 and it was horrible for him. We tried again a few years later and BINGO! I suspect we may have some trouble as he enters puberty, but since I am finally getting some zzzz's I think I can handle it. Cheers!

Adolescence beware or be weary?

So "big pants" (my oldest with autism), is 12 now and entering a stage I have always feared- adolescence! I am excited for this next phase as we have a lot to celebrate since his initial diagnosis, but I think there is something to fear as well- Facial hair, puberty, growth spurts and my selfish fear that he isn't my little boy anymore (of course I will still insist on smooching him in public whenever I please. I have earned that!).  I also see this next phase as another beginning. When this whole adventure started we were educating ourselves on every topic under the sun related to the newly diagnosed, early intervention, toilet training (still working on that one), etc. Now we are in unknown territory and this process starts again. I am now looking into conferences, resources, parent advice/success stories from those who have traveled these murky hormonal waters. I think this lifelong adventure will always have a beginning and that is good. It gives me an opportunity to look back on how far we have come and have the confidence to go forward and try new things. So with that being said, "big pants" is going to be full of surprises in the next few years. My NT 10 year old is on her way as well. Not sure the hubby and I thought that one through when we decided to have children 14 months apart. Oh well, let the games begin! Any advice will be well received. If only I could keep "little pants" little forever *sigh*.

Where's your pants?!

The reason for the title of this blog is because we are constantly saying, "Where's your pants?!" to both of our children with autism. Seriously, we worked so hard on independent dressing, buttoning pants, etc and we still have to remind these two knuckleheads to put them on! I even hear our NT 10 year old reminding them to put them on! Sometimes they comply, other times they just laugh and other times they just go to any closet and put on any pants. What is it with these kids and pants? We live in Minnesota for crying out loud! I suppose I should worry that a 12 and 8 year old prefer to be without pants, but they don't take them off in school or in public so I figure pick your battles. Maybe someday I can move to my own autism commune where nobody cares if you wear pants and doesn't see it as a real problem. I hope they serve wine and cheese there too!

Here we go again...

Well, here we go again. I used to write here and there when our adventures began and I was a stay at home mom navigating the initial stages of therapy, school and all things autism related. I stopped writing when I went back to work, but find that now I still have so much to say, share and laugh about. I love so many of the other bloggers out there, specifically Autism Hippie, Autism Daddy, Autism with a Side of Fries and Autism with a Glass of Wine. These are just a few of my favorites. I will plug some other goodies later...