Looks Like We Made It......

Well in about 2 hours, I will be able to say, that I successfully made it through August and Autism!!!  Since my kids have been in school the past few years August has always blown.  I dread it and start getting anxious about it in March.

Well this year, this summer, and all about it, were by far the best.  My kids are getting more mature, they can handle more, we have exposed them to a lot of things, and frankly my older more severe son - he does better away from the house than he does cooped up.  So I booked them solid everyday, we did stuff morning noon and night.  I had swim dates, play dates, trampoline parks, amusement parks, beach, lake, and anything I could think of to keep them stimulated, exercised and busy.

I am exhausted physically and excited that we made it through this August with few meltdowns, more smiles, more fun and hopefully we made some memories that my kiddos will carry with them.

It's the Little Things.......

 I have heard the statement in any different ways from many different people.  "Every time I think I have it bad, I think of you and get really grateful."    Seriously?!  WTF, Why didn't just grow a pair of balls and say what you really think.   You really think my life is a suck fest of epic proportions and you are really glad you're not me.  Or at least that's what I take away from that annoying as hell statement.

Do people really believe a special needs parent is enough of a peon where it's just okay to tell them right to their face you think the life they have to live is bad?  Where has the support and tolerance gone in our community?  One can not possibly believe, or be that inept or self centered to think that  telling someone that their life is so messed up that you're glad it didn't happen to them is a supportive thing to say.

I know intellectually that most people don't even fathom that this might be hurtful or something that would make a special needs parent sad.    I had another woman this week ask me if I felt cheated.  Totally fair question,  and my answer was a resounding "no, I think my kids were cheated."  But this life that was designed by autism didn't cheat me because it is my normal.   It's my baseline, both my kids have autism I don't have anything to compare it to.  Do I think sometimes I was robbed of motherhood?  Well I am still a mom, right?!  So no I wasn't cheated of motherhood, I think that I a dream and expectation that I had of motherhood was changed, but no cheated, not at all.  Jealous sometimes of how easy mothers of typical kids have it, but no I don't feel cheated.  Left out, yes I sometimes feel left out because there are so few of our friends that are tolerant of our children, and most of our friends kids now look at our kids like they have 2 heads.   But cheated no, I get to care for my kids on a deeper level than most can or do, and it will be for the rest of my life.  So no cheated is not the word I would use to say how I feel.

I will tell you something about my life that is so amazing and awesome, that a lot of typical parents take for granted and never appreciate.  It's the little things..... Like when I said "thanks" to my 5 year old and he replied, "you're welcome" without the prompting a speech therapist, a behaviorist, or me.  On his own he spoke a reciprocal statement and I think I was over the moon about that for 2 weeks.  When my 7 year old was watching TV with me last week, and laughed at the appropriate place and at something funny on Nickelodeon - after I picked my chin up off of the floor, because I realized the huge amount of cognition just opened up and shell of autism that was just cracked, I smiled and cried happy tears for days and grew a big sack of hope for him.  I don't see parents of "typical" kids in awe of their kids for the little things. 

I have to look for gratitude most days, and do my best to work at finding the joy in my kids and the awesomeness that truly comes with their hard work and therapy, and I'm probably about 85% successful at doing that.  Let's face it, some days are hard, and I forget to look for the good, but I'm getting so much better at it   So to have people repeatedly tell me that they are grateful they aren't me, I will try to grin and bear the words that aren't meant to be hurtful but re-injure a broken heart.

Smile and Ignore

I have to smile and ignore when I hear

"I don't know how you do it."
     Well what exactly would you do?  Leave the congnitively impaired child of yours in a cage or to fend for themselves?  Yeah it's better I ignore you.

I have to smile and ignore when I hear someone say
"Whenever I think I have it bad, I just think of you and get grateful"
    Why don't you just come up to me and say, WOW!!!  Your life is a SUCK FEST of EPIC proportions.  - See it really is better that I just smile at you.

I have to smile and ignore you when you say
"Do you think he could be like "RainMan" and you can take him to Vegas and count cards?" - Yes people ask me this
    That was a fucking movie - See better if I smile and pretend I didn't hear you

I have to smile and ignore you when you say
"Do you know what group home you'll put him in when he's 18?"
    No but I know what nursing home I have picked out for you.  - A smile is so much more pleasant

 I have to smile and ignore when I hear
"My kids eat what I make or they just don't eat, I'm not a short order cook"
   Well fuck you - Smile is better

For the most part, I do try and promote awareness and teach people about Autism so they are aware, informed and know, my kids are people too.  There are days though, when Autism has just kicked my ass, stomped on my soul, and abused my kids, my family, my house and I have nothing good to say about it, so I have to elect to be quiet, because sometimes autism makes me not nice or patient or dignified.


 I am so incredibly grateful to some of the people in my life that accept my kids and me and the autism and all that comes with it.  I love and appreciate and respect the tolerance and patience that it takes to include us in events.  I love our friends that have taught their children about the similarities in our kids and not the differences, I love that our friends are kind to my kids, I love our friends that just accept us because after all we are just people.  We are a little different, but we are not less.  I appreciate every single person in our life that goes out of their way to do something to learn about my kids and autism, and especially those that offer support and help for them and us.

There is a lot more good going on than bad.  Autism makes some days incredibly challenging, but everyday we all get a little better  but somedays, the best I can do is smile and walk away.  Please understand, it's not it, but I think enough of you on those bad days to not respond.

Accomplishing August

Since my kids have been in school the last 4 years, August has SUCKED ASS.  It is too much time off, the lack of structure, the lax routine, those things effect my kids, and not for the better.  I have medicated myself, my kids, drank too much and cried too much every year in August.  I look forward to it, the same way I look forward to a root canal

So this year I took a different tack.  I have 4 - 6 weeks of no school, so 5 - 6 hours a day, I have to fill with routine, structure, learning and anything we can to keep autism at bay.  Every single day the last two weeks, I have exhausted my kids, and myself.  Exhausted kids are good kids (at least in my house).

My anxiety about August usually starts creeping up about Spring Break.  Wracking my brain and trying to figure out who I am going to beg borrow or steal from to provide endless activities for my two sons.  It took me years to figure it out,  busy and structured for my kids away from home is a MUCH better time for everyone than pent up, bored high energy kids lacking structure.  It is just a recipe for blood sweat and tears.  I have to keep my kids busy.  I have to work their brains, I have to burn off all their energy, I have to do my best to keep them happy.

We are almost half way through the month, and we are having success.  I almost feel like I can't stop smiling, but I know I probably just jinxed myself too.  All of our work and tears, and the kids therapy and all the stuff we have done for them for the last several years, is making this summer a fun, happy and eventful time for all of us.  The 3 years we spent desensitizing the boys to the beach - they now like to go to the ocean, and spend time there.  I thought would never happen!!  Amusement parks, they handle crowds and waiting because its a motivating environment for them.  We have worked for years on the movies, they are doing it (for most of the movie), we have worked on scooters, bikes, hiking and social situations.  OUR YEARS AND MONTHS AND DAYS OF ENDLESS WORK AND THERAPY AND TEARS have now turned into SMILES and LAUGHTER and JOY. 

This year they both went to Special Camp for Special Kids, and it was a wonderful experience for both of them, and I got happy boys back everyday.  I was filled with joy

We are still attempting to give Franklin a voice with ProLoQuo2Go, and it's getting better everyday, and has cut down his frustration a lot, and we are moving forward.

I am even attempting a vacation at a HOTEL.  God HELP me. 

I think the moral to this story is NEVER EVER GIVE UP on the kids with Autism.  Keep pushing, don't fear the autism, always be caring, and always be working.  It is the work that will make the fun come eventually.  Focus and find the things that motivate your kids, and build on them, and make your foundation strong, and keep doing it, and one day, your kid will walk into the freaking ocean in his clothes because you weren't expecting it to happen that day (that is exactly how it worked for us), I thought he would kick the sand around for 5 minutes and walk back to the car, and he walked waist high into the ocean!!! 

This summer is giving me hope back, recharging my batteries, and giving me the energy and will to get through the major start of school, and attacking communication full steam ahead.   Did I mention my older son is fully potty trained now?  Yeah, that happened this summer too, almost 8 years old.  NEVER STOP WORKING ON IT.

How is autism treating you this summer?