Welcome to another edition of Autism in “Real Life”.
Today I’m please to introduce to you the Leaman’s. I asked Pam the same series of questions about how Autism has touched her family’s life. Below is Autism through her eyes..
(Lost and Tired): How has Autism touched your life?
(Pam): Autism has touched my life in many positive ways! It’s turned me into an eternal optimist so I want to share the up side of the journey. Autism taught me to have patience with my son, my girls and the people in my every day life. It brought amazing teachers, parents, advocates, and other kids on the spectrum into my world. Autism put me on a career path that I never had imagined for myself! Autism has given me the courage to pay it forward and I currently work with ASD kids. It’s taught me how to give back and see the miracle in all the little things that most of us take for granted. It taught me how to love unconditionally, to not be judgmental. But most importantly it has taught me to accept things as they are, not as I had hoped they would be. People often ask me if I could “cure” my son of his Autism would I? That’s never an easy question for me to answer. Autism doesn’t define my son. It is just a part of who he is. If he didn’t have Autism, I don’t think I’d recognize his true spirit. This journey isn’t always easy, but I don’t remember the boy I once had before Autism.
I only know the boy I’ve got now and I love him just the way he is!
(Lost and Tired): How long has Autism touched your life?
(Pam): My son, Parker was diagnosed with Autism one month before his 3rd birthday. He will be 10 the end of this month. So in these last 7 years, Autism has touched my life every single minute of every single day since we got our diagnosis. It’s not something I can turn on and off. It’s always there…looming in the darkness. It’s part of every single thought I seem to have.
(Lost and Tired): What type of impact does Autism have on your family’s life?
(Pam): Autism has had a huge impact on our family. I knew about a year before our official diagnosis that I was losing my son. Every day when he crawled out of his bed it was like a little piece of him was missing. Once we got the official diagnosis, Autism completely consumed my life! I was so involved in finding out how to help my son, that I forgot I had two typical daughters that needed their mother. And as hard as it is to admit, that first year I couldn’t be bothered with anyone that didn’t have something to do with Autism! Our diagnosis (and I always say “ours” because it does affect the nucleus of the family) also put a huge hole in an all ready fractured marriage. Parker’s father never had the desire to get involved in helping our son. I turned into “supermom” and beat down doors and broke down barriers that seemed to always be in the way of helping him and on days when I could, I gave my girls what was left. I’m happy to say that I’ve found a balance living with autism everyday for all three of my children. It’s definitely a balancing act and there are days when I have to dig way down deep inside me to find anything to give, but through the grace of God I always do…
(Lost and Tired): What types of sacrifices have you had to make?
(Pam): The biggest sacrafice I’ve had is probably the loss of my marriage. I almost hate to think of it as a sacrafice because I believe that loss was for the greater good, but it defintely had an impact on my life and the lives of our children. I also sacraficed precious time that first year with my daughters that i’ll never get back and that will always leave a crack in my heart. I sacraficed relationships with family and friends.
(Lost and Tired): What kind of “toll” or long term effects, if any, has Autism had on your family (financial,emotional, physical, sect)?
(Pam): Autism is a financial monster! I struggle with paying the bills vs. getting Parker involved in a therapy that could change his life! Or paying the rent vs. fencing in the back yard because Parker’s a runner. It definitely has a strong hold on the purse strings! The emotional toll it’s taken is undescribable. I think the only way anyone can understand it is to be walking this journey with me. There are highs and lows every day! And the stress…oh the stress! I don’t even know how to articulate the stress!!
Another toll it’s taken is on my friendships. Most of the friends I had prior to our diagnosis are long gone. There have been one or two that have gutted it out with me and even gotten down in the trenches to pick me back up. But for the most part, the majority of my friends/relationships now are with people who’ve got kids on the spectrum or kids with other disabilities.
(Lost and Tired): If you could make people understand 1 thing about Autism, what would that be and why?
(Pam): That kids with Autism are still just kids. They may look different or act different, learn different, talk different, but they can understand and do have feelings. There is nothing more disturbing to me then people talking about any child with autism when they’re within ear shot and think they don’t understand what’s being said! Maybe they don’t but what if they do? Think about how you feel when you overhear someone talking about you or someone you care about and they think you aren’t in the room…it can be deeply hurtful and sometimes paralyzing.
I just want to say a few things. In my life I’m not often inspired. Your story brought back so many memories and tears to my eyes. I know what it’s like to lose a piece of your child every day and the desperate struggle to find balance. Our situation with Gavin’s biological father was very similar. It’s heartbreaking but your words and the love, strength and conviction behind them is truly inspiring to me. I have nothing but respect for you and your family. Thank you so much for sharing your story and allowing us to see Autism through your eyes.
I also want to encourage everyone to share there stories as well. If you would like to do that here on the “lost and Tired” blog please send an email to: firstname.lastname@example.org and I will arrange for that to happen.
Please join our Facebook group: “Autism touches my heart” . This is a gathering of parents who “get it”. We support each other with out judgment. It’s a great place to go and vent and or share your story. Connect with others in a similar situation. YOU ARE NOT ALONE.
What Pam said about talking in front of little non-verbal, autistic kids as though they didn't understand is really true. My youngest (severely autistic) was only a few months old when I realized that I had to be careful what I said around him or he would cry. But there is a humorous side to it too. My teens would tell me their boyfriend-girlfriend secrets in the car when he was in the back seat. It did not take long for him to pick up on that. He would giggle and look at them sideways during romantic parts of movies or wink at my daughter when a boy she liked showed up at church. He was just seven years old. So yeah, you gotta watch your words!