Friday, August 30, 2013

What we learned this Summer

Am I the only one who hasn't thought the summer was awesome or wonderful or easy?  Am I the only one who can't believe Labor Day is already here because we've been having so much fun?  These are the people I keep running into.  I'm hoping you guys tell me I'm not alone.

We didn't put bathing suits on once this summer.  We never went to the pool or the beach or the spray park.  We spent the summer in therapy and driving 45 minutes each way to it.  Every day. You know what my kids learned this summer?  How to sit in the waiting room while their siblings are in therapy or in doctor appointments, with the help of snacks and iPads of course.  The time there is still challenging but it has become something we just do.

To me, for our lifestyle, this is a huge accomplishment.  Since my 4 kiddos are ages 6,5,4 and 3, it has been a nightmare for me to take them alone.  I am able to make a therapy schedule for the fall just counting on myself which is a huge relief.  The place we go to for therapy, now knowing and treating all four of my kiddos, and seeing us every day has been amazing about helping me double up on appointments.  Having back to back Speech, PT or OT or having multiple kids have appointments at the same time.  My 3 younger kids all have OT at the same time, they each work with their own therapist for about 40 minutes and then do something all together to help them learn to play together since they have no idea how to do that. The hope is that if they learn to play together, it will minimize the constant chaos at home.

Maybe next summer we won't spend every day in therapy or at the doctors.  Maybe all this hard work will have paid off and they will want to be wet, they will want to walk on sand and they will play together.  That's why we spend all the time in the waiting room...for the success that eventually comes.  We will keep on keepin on.

Monday, August 26, 2013

Staying Strong

Some days I feel like Autism is beating us with a stick.  Not letting us get ahead, not letting us move forward, keeping our entire family in a static position of survival.  This position of survival isn't really living, it's purely surviving day to day life.  It often feels like we are just trying to survive Autism.  While surviving, we aren't doing all the fun family and kid things other are doing.  We are literally only surviving. 

Autism and it's friends beat us daily.  Autism brought friends to the party.  This party that no one wanted to be invited to, with no opportunity to decline.  Autism's friends are the list of accompanying diagnoses that keeps growing.  More things to Google.  More things to learn and understand.  New battle tactics become necessary.

We are fighting daily battles, all day long.  We go from one battle to the next, often multiple battles at a time.  Some we don't even know what or why we're fighting.  Some battles we all end up in tears together holding each other crying.  This is what autism has done to us, to our family.  It continues to beat us, some days harder than others.  If it takes a day off from beating us, we pay for it.  We live on the edge.  The edge is a very stressful place to live.  There is no break, no real relaxing and no way to plan or count on anything. 

Staying strong can be tough.  Especially when we are exhausted and running on empty.  Staying strong is required because getting lost in all those terms and be dangerous but knowing that we need to learn and understand.  Staying strong is having patience about meltdowns that we don't know a cause for or don't understand. Staying strong is the rearranging of every single part of our lives for our kiddos, constantly.  Staying strong is staying up late to wash the only shorts that don't hurt.  Staying strong is staying awake at night trying to figure out how to tackle an issue.  Staying strong is about having tons of patience.  Staying strong is being online, reading and talking to other parents trying to find new ideas.  Staying strong is not becoming bitter while you sit on the sidelines watching your family and friends move forward living typical lives.  Staying strong means seeking help for the kiddos and working for progress but it's also about realistic.  Staying strong is about not losing your shit when you hear hours of screaming every day and have no help and no adult conversation because no one understands.  Staying strong is living in constant turmoil and getting up every morning ready for another day. Staying strong is realizing that the life you have isn't the life you were expecting and dealing with that, moving forward and embracing it. 

Staying strong requires physical, mental and emotional endurance.  Some days staying strong is more than difficult.  Sometimes we aren't strong but we regain our strength.

Autism is relentless.  It swings it's stick at us, trying to rattle our half full glass.  We have to keep things in perspective and stay strong.  Our kiddos need us.  Staying strong is the only option.  We do it for them. 

Wednesday, August 14, 2013

Name That Tune

This afternoon I went to our 4th IEP meeting for this fall, this one was for my daughter.  Her case worker called me and said today was the meeting and I didn't show up so what did I wanna do. I said I didn't get the letter and would never have missed it.  Already knowing me, she said she figured but that this was the only day the Child Study Team would be in session before school starts on September 9th so if I didn't go today she wouldn't be able to start school then.  She asked if there was any way I could come this afternoon.  I said I can come now but I gotta bring all four kiddos with me which she said was ok so I got everyone ready to go. 

I drag them over to the school armed with iPads and snacks.  I'm pretty nervous cause things have been hairy here and we've caused a major scene everywhere we have gone lately. 

My 5 year old son was acting really crazy and rubbing and licking me and was clearly in overload.  He was carrying his iPad by it's handle as he does everywhere he goes.  He turns his iPad on which immediately starts blaring 'Blurred Lines'!  Everyone on the Child Study Team burst out laughing and by those first couple beats every single person knew the song before I turned it off.  I told them that he thinks it's a kid song since it says to be a good girl in it.  Everyone was hysterical.

I'm such a good parent...what a prime parenting moment for the team who evaluates all my kiddos to see....Everybody get up!

Saturday, July 27, 2013

Yay Me!

Holy Guacamole!  I am so excited that A Legion for Liam gave me The Liebster Award! 

The winners must do the following:
1. Thank the Liebster Awared presenter on your blog
2.  Link back to the blogger that presented it to you
3.  Copy and Paste the award on your blog
4.  Present the award to 5 or 11 blogs that deserve to be noticed.
5.  Let them know they've been presented with the Liebster Award
6.  Answer 11 questions posted by the presenter
7.  Eat some dark chocolate.  It has anti-oxidants in it.  Unless you are allergic to chocolate.  Then skip 7.

Let's do this!
1.  Thank you A Legion for Liam for presenting me with the Liebster Award.  This is super exciting and I'm very honored. 

2.  Done.

3.  Done.   

4.   I present to...
      A Chameleon in the Spectrum
      Sleep Deprivation Diaries
      Bugaboos Treasures
      Rubber Duckies and Spoons

5.  Doing that next.

6.  Questions about me...

1.  What, if anything, is completely off limits as far as blog topics for you?  Nothing specifically.   I started blogging to talk about life with Autism and being a part of the Autism community but who knows where it will go. 

2.  What is your favorite sound?  Silence!
3.  If you could go back and talk to you 15 year old self, what one piece of advice/information would you share?  Be wise about people, they are not always what they seem. 

4.  How did you end up doing what you do today?  (If you're a SAHM, what made you choose between that vs. going back to work?  If you work a paying job, how did you end up in the field you are in?)  I decided to stay home when our first baby was born and have been home since.  He was born at 32 weeks and in the NICU for 5 weeks and as soon as he came home we were expecting baby #2. The first 2 kids are 12 months apart, then 14 months until the 3rd was born and 14 months until the 4th was born.  All came in less than 3 and a half years.  They are now 6,5,4 and 3 and all have Autism so I'm pretty busy!

5.  What is your guilty pleasure?  Reading.  I love to read and have a book in my hand any minute possible.

6.  What's your favorite candy?  I love dark must be dark.

7.  What prompted you to start your blog?  A gentle push by some friends because our life with 4 kids with Autism is so unique. 

8.  Do you have a favorite food?  If so, what?  Sushi!

9.  If you had to pick one thing to change about yourself, what would it be?  I would be more artsy creative so I could come up with more fun things to do with the kids...and be good at it!

10.  What physical attribute do you like the most about yourself?  My strength that allows me to keep up with the kids and carry them and all their stuff.  I could never keep up without that!

11.  Do you still live where you grew up?  If not, how far away are you from your hometown?  I don't live where I grew up.  We currently live about 6 hours from there. 

It's been fun!  Now, I'm gonna eat Dark Chocolate!

Thursday, July 25, 2013

Welcome to Autism

There should be a welcome letter sent to parents new to Autism life...something like, "Welcome to a community where the parents are the strongest, most dedicated and understanding parents to the bravest children in the world." 

It took me a long time to figure out this new world I'm now a part of.  The welcome letter would have opened my eyes a lot sooner.  Sometimes I see parents that are clearly new to the journey and I want to tell them this...don't be sorry for what you might think you lost...look at what you have gained. 

I love the camaraderie of Autism parents and how we all cheer for each other's kids.  I've said it before and I'll say it again...No one truly understands what it's like to live with Autism.  No one.  Visiting it or knowing it is not living with it. 

Autism will break your heart and put it back together again a million times.  You know who's got your back....the other parents.  They've been there, done that, cried about it and smiled about it.  And, they can tell you what they did to survive it.

They get the sarcasm and sense of humor that we must have to survive this unpredictable and crazy life that we are all living. 

They understand what it's like to never sleep well.  

They know how it feels to give more when you are way past empty.  

They understand what it's like to advocate and fight for what is right in school.

They've cheered their kiddos through hours of therapy.

They've celebrated milestones whenever they might happen.

They understand how those looking in at our world view and treat us and our kids. 
They've seen the looks and received the criticism.

They feel the heartbreak when their child struggles.  

They understand how nothing is easy.  

They know what it's like to lose family and friends.  

They know how it is to survive without much or any real support.  

They know the painful decisions we have to make.

They know what it's like to worry about the future of our kiddos. 

Entering this world is extremely overwhelming in so many ways...trying to learn a whole new language, understand a child's behaviors, therapies and how to help them.  If newbies were just told at least this part about the other parents, the transition would be a lot smoother and easier to manage. 

To know the other parents is to know support like no other, even if they all live inside the computer.  If there was a welcome letter, it would be obvious that one can lean on the parents in our community and they will hold you up while you figure the rest out.

Friday, July 19, 2013

Do you know the answer?

In a house full of Autism, we prepare and discuss upcoming events over and over and over and over and over etc!  Hundreds of times.  Literally.

However, questions often come up that I don't know the answers to.  Answers that are impossible for me to know. Answering such questions incorrectly can lead to immediate disaster.  This is not a guessing game. Assumptions can be deadly... I'm sure you've heard the line about the ass is always ALL ME!

Sometimes we can successfully redirect and dodge a bullet but other times people on the west coast can hear our meltdown happening on the east coast. 

It's really amazing how their brains work and think about things because they ask questions and worry about stuff that would never in a million years pop into my brain.  Like being worried about ice cream coming in a plastic or glass bowl.  I don't care what ice cream comes in as long as it gets to me!

They ask a million questions over and over and very quickly.  It's like rapid fire coming from 4 directions.  I must be careful to always be paying attention to what they're saying cause if I misstep then it's trouble.  They'll catch me in the next rotation of questions and will know my answer isn't the same as one of the hundreds of times before and someone or multiple people will lose it.  The car rides going places are consumed with a constant drilling of events that are going to take place, their order, what the people would be wearing, will there be boys or girls, what room will I go in when I get there, what color will it be, will the food be on plates or bowls, will there be a potty there, will the cups have lids and straws, etc etc etc.

Sometimes I won't remember what I said the last time a certain question was asked and then I'm screwed.  I can see it in their eyes that they are waiting for me to say the same thing, almost forming the answer with their mouths in anticipation of what is coming out of mine and I don't know what to say! 

I've gotten good at trying to answer but not answer questions, giving them some vague response that throws the question back to them or sort of leaves it open-ended.  The best I can hope for sometimes is to throw them off for a minute or I can hope that they or another kiddo will spit out the answer I forgot.

Question diversion is just another one of those skills I've developed as an Autism Mom.  If I could just get my memory to keep up we would be better off but that probably involves sleep so I'll keep hoping for sleep.

Tuesday, July 9, 2013

5 Things to say to an Autism parent

In response to my blog post about the 5 things I don't want to hear as an Autism parent (which you can read here) I thought a list of things to say seemed like it might be helpful. 
Here are some options to say to an Autism parent that we would prefer to hear. 

1.  What can I do to help or support you?  We don't hear this enough, that's for sure.  Help or support can come in a huge range of actions, from texting to helping out with the kids.  Anything between that would be helpful or supportive.  We live in a very isolated world.  We are often lonely, sleep deprived, over-worked, over-stressed and would love a little help.

2.  That must be really hard.  Just acknowledge the obvious.  It is really hard.  Hearing that validates what we are doing without seeming patronizing.

3.  You're doing a great job.  I can't express enough how wonderful it would be for an Autism parent to hear this. Give them credit for all their hard work, difficult decisions, hard days and sleepless nights. 

4.  I have no idea what you're going through.  This is true and it's ok to say.  Others don't know what it's like to deal with the hundreds of issues that we deal with on a daily basis.  Our lives are different.  It is impossible to know what we are going through unless you are also an Autism parent. 

5.  I don't know much about Autism, what should I know?  Saying this doesn't make one look ignorant but interested in learning more and being involved.  Most of what people know about Autism isn't even accurate and we would love hearing that people want to learn more. Autism Awareness and Acceptance are really important to us.