Wednesday, April 2, 2014

Why I light it up blue for April..for acceptance.

April is Autism Awareness month. During this month Autism Speaks wants people to shine a light on autism (a blue light). I put out of my Autism Speaks sign and put in my blue light on my porch every April but I am not a supporter of Autism Speaks. Many people have their own reasons behind this most of it has to do with money or for many other reasons (but it isn't worth getting into it).  I like to have people donate to local autism charities instead of Autism Speaks. Between DAP and Autism Delaware we get to go to certain events that are tailored to the needs of my kids. So donating money to them would make sure that these events happen for others. So regardless of what I think about Autism Speaks I still follow along with the campaign. I realized though awareness is sort of a silly word....who isn't aware of autism now? Everyone knows about autism but do they really know what it is? Do they accept it? I no longer want awareness...I want acceptance for my kids. I am told the funny looks I get towards my kids is all in my head. I am pretty sensitive to it....mainly because I have gotten those looks all my life. I know I am a beacon for looks but I know when my child falls to the floor and I do my 1-2-3 count (it calms myself and Mia down...and I scan the surrounding to make sure no one gets hurt...I see the stares) I guess I would look too if I saw a child fall to the ground but it is attention I don't need at the moment. It isn't really the looks is the whisper to the friend and the eye rolling after, it is assuming that my child is a brat. It is assuming I am a bad mother. I don't really care what people think about me. I do care what they think about my kids because I won't always be able to protect them.

So what I am trying to say? I don't really know I am sure this will end up being a babbling mess. I love this month. I love all the events people plan just for my kids. I love going somewhere that is tailored just for my kids. I love them being the guest of honor. I love my kids feeling special. I like not having the little extra bit worry of having to leave because something isn't adapted for them. I know the world isn't like that. The world isn't just going to change for them but for this month it does. The lights are dimmed, the sound is lowered and they become the stars. There are still things I wish they could do like other kids but we just can't but I don't feel they are missing out on their childhood. Yes a lot of action and fun is usually jammed into the month of April and I wish they would stretch it out a little...but I can't complain really.

Every moment I wish I could capture. I wish I could just enjoy it forever but that is life and it doesn't stop for anyone. I have missed 2 years of autism walks, I really planned to attend this year, I should but for some reason I never do it. I do the buddy walk and Girls on the run but for some reason something so dear to me I stopped doing. The girls do have soccer but I think Chloe would like the walk a little more then soccer. I really miss all my autism families. You really create a bond even if you don't see each other for a year or know they are there. They understand what you went through and what you are going through. So maybe that will be the moment I capture this walking for Autism Delaware....for my girls....for all the other families.

Wednesday, March 26, 2014


Everyday you wake up with the same to do list. Sometimes you have a few items added but when you are mom you usually have your routine.

6:30am Wake up
6:35am Shower
6:45am Get dressed etc.
7:00am Get Mia dressed, try to wake up Chloe
7:10am Make breakfast (right now they want scrabbled eggs) While Mia eats get her hair brushed, socks and shoes on. Tell Chloe to wake up again if she isn't downstairs.
7:27am Bus for Mia (make sure she has her everything)
7:30 am Walk Pip
7:40am attempt to leave to take Chloe to school
8:15am Work
4:15pm Leave work to pick up Mia
4:40pm Get Mia
5:30pm Pick up Chloe
5:45pm Go home to check homework, make dinner, walk Pip, eat dinner, make lunches/snacks
7:25pm Get baths started
8:00pm Get them to bed walk Pip
8:45pm Breathe and get ready to repeat in the morning

Of course every parent can tell you there is always a wrench that someone throws into your "perfect" routine. Like doctor appointments or snow days. When you have kids with autism and you have to change their routine it might cause a little havoc. You see Mia gets breakfast at school but with all the snow days and 2 hour delays she was eating at home...that became her routine. So now she must eat or she isn't getting on the bus but she also must eat at school (a muffin, yogurt and peaches) because that is also her routine. Now I go through 2 dozen eggs a week...and I am allergic to eggs. It got me thinking about everything while rushing around this morning zipping up her coat....her wishing me a Merry Christmas because it snowed last night.

The routine gets boring...even though your life isn't boring. Not sure if many people can understand that logic. I love that every Thursday I go grocery shopping before work (it is pay day). It breaks up that routine. It is my one day that I get to be around strangers. I work with my family but at the store I can just zone out. I love having those 2 hours to myself.

I just felt the need to look back at this much has changed while so much hasn't. It is still just the 3 of us and autism is a daily "hurdle" in our lives. It is forever changing but always there. I think the question parents always ask is will it ever get easier. I have grown to understand that no it won't. It might be different but it will always be hard. It is a very odd statement to say it was easier when my twins were infants. It was easier for me to get around then....I wish I took advantage of that time to do more.....but I didn't know. I didn't know that I wouldn't be able to go certain places with my kids because it will end with my daughter on the ground having a meltdown. So instead I have to put her in her wheelchair. Not all places are easy to push a child around in a wheelchair. We do a lot though, in April we start soccer again, but it is never easy. I wish I had more help or more money or both...either would make it much easier. But this is our life this is our routine and as strange as it sounds....I still like it.