Do You Want To Understand What It Is Like?

Lonely Road

Lonely Road

Throughout the years I have been working with special needs families, one thing has always remained consistent; They are treated differently. I have heard countless stories of struggles parents face, but also some really amazing stories too. I recently had a conversation of a mother of a child I work with. We were talking about how it is for her going out into the community. She was describing to me what sounded like such hectic, scary, and frustrating day….but this was her norm. When going out to a family event, shopping at the mall, or even her average grocery trip she experienced staring, mumbling, and “weird looks” her way.

Now, I know that it is different for all of you…but what really made me want to bring this topic up was how can we make it different?

Is It That People Just Don’t Know Better?

Aren’t sure how to react around a child or adult with special needs?

Is it that they don’t know how to communicate what they want to actually say?

So, in response to this discussion, I asked a group of parents:

If You Could Say Anything To People About What It’s Like To Parent A Child With Special Needs, What Would It Be?

These were the very powerful responses I received….

“What does it feel like—lonely, isolating…you feel like others judge your child as badly behaved, damaged, contagious and that they judge you as if your child is a product of your poor parenting. I could go on and on about how much preparation is required before an outing into the community. We don’t just hop in the car and hit the mall or supermarket. What does it feel like? Exhausting.”

“Admittedly my response to this question might be different year to year or even day to day but today…Do not feel sorry for us. We are the lucky ones.”

“I am just like you. I am not a superhero for being a special needs mom and coping with all that comes with it. You would do the same if it were your child. But if you do happen to see me looking a wreck, rushed, flustered, overwhelmed, etc….ya know what? A smile goes a long way. Hold the door open for me. Ask me what I think of the weather lately. I need a little more typical in my life. Just please…don’t stare. My child and I are not a freak show. We do not want to be observed or judged.  And don’t feel sorry for me…..don’t need it. My daughter has made me strong. In the end we all want acceptance. I want acceptance for my child. However if crossed I will bring out Mamma Bear and you will be sorry you ever woke up that morning.”

“Please don’t ignore my child. Talk to her and treat her like you would any other child.”

“Don’t for a moment believe that you know my experiences or the experiences of any other special needs family no matter who you know. First, just like any other child, my child is unique.  Would you presume to understand all there is to know about a child you just met simply by knowing their age and gender?  If you’ve met one child with autism, you have met one child with autism.  If you are interested in what it’s like to live in my shoes, ask me, in a kind and respectful way, at an appropriate time, I assure you, you will not know otherwise.”

“Don’t presume that caring for my child makes me super mom. Taking care of my kids doesn’t make me a great mom, it just makes me a mom, that’s what we do.”

“It is the most challenging yet rewarding thing I could ever do. It is the most challenging because there is a constant state of grieving for the child you still have but not the one you expected, yet you still need to be able to cope and care for your medically complex child. I grieve the milestones my daughter will never reach but other girls her age will. It’s something I try to think about until I see the little girls dressed as ballerinas and are heading to dance class.

It is so rewarding because there is no purer form of love that I will receive but from my special needs child. She is an Angel sent to me. She has made me stronger and I bear the responsibility of  2 voices. My own and hers. I am her biggest cheerleader and her biggest Advocate. Her milestones no matter how small are celebrated as if she was just accepted into Harvard, because I know it was that difficult for her to achieve. She is amazing and I know she changes lives. She changed mine.”

Lastly, a parent sent me this article that I needed to share…

Click Here for the Article »

Maybe just taking a moment to read through these feelings, thoughts, and experiences … all of us can see from where they stand. We may not know what it is like to walk in their shoes, but we can at least help give them a comfortable pair.

Christine Astarita