Always Looking for Hope
I am an autism parent to two children with autism. I don’t hide that- in fact, I have always been very open about it. When I started this journey with my children, I was uneducated on autism and I still don’t claim to know it all- in fact, I know nothing but my day-to-day trench through it. It changes daily. I started Ella’s Hope because I wanted to change things for parents- I wanted to show the hope in it all. I have met so many parents that are losing hope- that are exhausted and sad because they have tried the “new” thing that will help their child and don’t see fast or huge amounts of progress.
I am not going to lie though- I am exhausted. I am sometimes sad. I sometimes wish I had a typical child, so I at least knew that feeling. This does not make me a bad parent. This does not make me resent my children. I do not think that our life is tragic. I don’t resent the life that God chose for me.
What I do resent, is that sometimes as a parent, I feel the need to photo shop my life to always appear happy. So many times, I feel a guilt in the community if we complain. We see stories of Autism Speaks and other advocate groups, painting a picture of unhappy, horrible lives to raise money for our cause. I have never done this and never will. But, I have a right to be realistic. The smiling pictures I post on Instagram and Facebook aren’t our every days- there is struggle, there are tears, there are a lot of bad autism days. Sometimes, I feel that we live on an island, isolated by the fear and guilt that I will be perceived as “whining” or “complaining” if I say too much, so I don’t say anything at all. Unless it’s positive, and then again, I photo-shop the perfect picture of autism. I don’t ask for help and I bottle it all up and sometimes my only release is a good cry during Parenthood. (What will I do without Parenthood!?!) That isn’t autism, that is me, trying to balance the good and bad and filtering my feelings. Bury the worry for when we are alone. Smile, you are strong enough for this. Autism mommas and dads, are you feeling me?
So back to photo shopping. Through spreading the positive, there is also hope. More than anything, that has been my goal. Share hope. 2014 did bring us so much that I did share. Luke found a voice in his iPad- he now communicates his need of cheerios, apple juice, and other preferred foods. He lets us know what he wants to play (videos or Minecraft!) and he uses it at school to get basic needs met. He can say “more” to his dad, when he wants more of being thrown on the bed(always sensory seeking!) and he can sign “rock” when he needs that comfort. He attends kindergarten in a self-contained class and works really hard every day after school in therapy until 7:00pm. Ella led her own IEP by power point, stating her strengths and weakness and that a cause of her “meltdowns” is losing at games and being last or late. She is the “queen” of her resource class, the sole girl with autism in a class of 7 high-functioning kids and transitioned into a new 4th grade typical classroom with ease and support. She is trying new foods at school and had a fantastic 10th birthday with her cousins and family, until catching the flu that evening. Highlights of the year, autism, somewhat photo shopped. But isn’t that what we do in life- filter the bad and highlight the good?
Ella’s Hope will continue to spread hope to parents. I will continue to spread hope for parents. I will continue to highlight the highs in our life with autism. We will continue to provide up-to-date resources and information to parents and support families in their own journeys. But I won’t pretend anymore that there isn’t another side to the picture, the picture before it has been altered. I am here for you. I will listen. I won’t judge. I will not argue your stance- I am an autism parent and I don’t want to live on an island. You can count on me, before the photo shop.
To everyone out there, enjoy the New Year and Happy 2015! May this be your year of hope!