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.

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. 

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!