I'd argue that this is a fallacy. I know parents who have kids who are lower-functioning than Jack, but most parents I know have children who are higher-functioning or on par with Jack. We each face issues that cause very real struggles in our lives and the degree of those issues in no way diminishes the challenges that other families see as their reality.
Rather, I think that the parents who claim to be "happy" are so because they have made the commitment to themselves to be happy.
Parenting a child with special needs isn't easy. Even I will admit that. When Jack was first diagnosed - really, even before that, when we first going through EI evaluations and learning the extent of Jack's delays - I felt like the sun might never shine again. It was a dark place to be. I remained in that dark cave of my own despair for months, certain that there was no way out.
Eventually, I discovered that it was not autism, or hypotonia, or dyspraxia, or communication delays that were causing my despair - it was me. It was me who was allowing myself to believe that my child's special needs would take something away from my life. There is no evidence that my child's special needs have to take away from my happiness. I just might need to adjust my expectations and reset my dreams.
So, I made a commitment to myself. I would not allow my child's special needs to cast a shadow over my entire life. I will allow autism to win a day, or even a week, but autism simply cannot have my overall happiness. It is not that the autism we experience is mild or easy to handle by any means - Jack is somewhere in the moderate range according to his developmental pediatrician - but it is that I force myself to take joy in both the little victories he makes and, when all else fails, in my own victories.
In other words, I'm gonna fake it until I make it. I will allow myself a day here and there to give in and throw my hands up in the air, but the other days I will put on a smile, go for a run, and make myself find some joy, even if I don't feel like experiencing joy at that moment.
Even to this day, my child requires a lot of assistance with regulation, communication, and even the most basic self-care tasks. Some days are difficult. Some days, I wish he didn't need assistance with feeding, or that he was toilet trained, or that I could simply tell me what is wrong or what he needs. Some days I cry. Others, I sit in a temporary fog, blasted by the everyday realities we face. The days when the meltdowns last for hours and I simply cannot figure out what my boy needs are the days in which I find the optimism slip. At the end of the day, I know that I have, once again, survived the storm. I will survive the next. The sun will indeed rise again.
Here is the secret to happiness - don't let every moment of your life revolve around your child. That sounds so counter-intuitive to many special needs parents - myself included - but you can take time for you while focusing on your child.
I find my sanctuary in running and writing. I stay on a training program - right now I am training for a half-marathon - and I continuously set goals so that I can take pride in something that I am doing for myself. Now when Jack is home, I spend every waking moment focused on him. We do Floortime, I work on communication, or we do sensory-motor activities. However, Jack spends a good deal of time in therapy and in special needs preschool, so it is in those times that I take some time for myself. My house looks awful. I haven't swept the floors in weeks. The dust bunnies are taking on a life of their own.
I'm never going to win an award for being a domestic goddess. I will, however, keep my sanity and a degree of satisfaction from taking time out for me.
You don't have to be a runner or a writer. What you do need to do is what makes YOU happy, because if you have something outside of your child that gives you joy, then you will always have an element of happiness that is independent of the struggles your child may be facing at that given time.
Raising a child with special needs isn't a sprint; it's a marathon. You need your energy to keep going. You need elements of happiness in your life to help you keep going. You need to believe that, regardless of the degree of your child's special needs, you are deserving of your own happiness. Being a special needs parent does not mean that you need to sacrifice everything that you are and all that you have to give. Believe me when I say that your child will benefit from the happiness and optimism that you radiate.
I truly believe that happiness is a conscious choice. So, take the time you need to process your child's diagnosis in whatever way is best for you, but know during that process that the world will not always seem so dark. Some parents will come out of the starting gates glowing with optimism and others will take much more time. It took time for me to emerge into the light. Take the time you need.
I promise you the following - regardless of your child's diagnosis, the sun will rise again tomorrow. Life will continue all around you. When you decide that you no longer want to live in that darkness, do not be afraid to go forward and seek your own happiness. Don't look back. You will have bad days, bad weeks, bad months, or even bad years. I know that I do. Once you decide to seek happiness, I can bet that you will never again enter a place of such abject darkness as that which you knew before.
So take the time for you, and do so with no guilt, no shame, and no regret.
Jeanie is a former engineer turned stay-at-home wife and mom to an amazing 3-year old little boy on the autism spectrum. After her only child was diagnosed at 24-months with autism and an alphabet soup of special needs, she began to write about life parenting a very young child with special needs with honesty, optimism, and as always, a touch of humor.
When not posting here, you can find Jeanie at her regular blog, Reinventing Mommy. To follow more of her ramblings, like her on Facebook!
I love this!!! Very inspiring- started my day off right. Thanks!!! :)ReplyDelete
I adore your post .. This is me. !!ReplyDelete
I have made exactly the choices you have made and now that R is 7 I realize how impt those early decisions were !
I smiled when I read this and also thought...this is me! My son is severely challenged and I am happy! Jeanie, as you are aware, it takes time to get to the *happy stage*. I think that you are extremely fortunate that you have reached it already.... it took me many more years to get there. Onwards and upwards! :)ReplyDelete
I'm going to give you the highest praise I know of...I sincerely wish I'd written this myself. I could not agree with you more.....as I read I looked like one of those Churchill Insurance dogs nodding away and murmuring 'Oh Yes'! Truly fantastic stuff!! My daughter has Rett Syndrome and the days after her diagnosis were very dark, but like you I decided her diagnosis would not define her life...or mine. On difficult days I roll around in the mud of my own personal pity party...but the first chance I get I run a bath and clean myself up. I am really grateful to the friend that connected me to your blog...you now have a faithful and committed new follower.ReplyDelete
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