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!