I made a Facebook post the other day that touched on the struggles of raising a child with special needs.  Sharing the hardships of parenting is a difficult thing for me to do. It’s uncomfortable for me to be raw and show emotions in front of others, for one. I tend to be more of a closet emotional mess.   But mostly, I’m always afraid that by sharing my fears, doubts and overall difficult times, that people will begin to feel sorry for me.  That is the last thing I ever want from anyone.  I’m certainly not sorry, not sorry about any of it!

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My emotional rollercoaster

Yes, being a mother of a child with Down Syndrome is hard!  Adding some of Stella’s other issues: Sensory, stemming, behavioral, being non-verbal, etc can make it even more difficult.  There are days when I want to crawl into a hole and just cry.  Some days I’m angry at society and their views on people with Down Syndrome.  There are times when it infuriates me that I have to fight so hard for her to get the same education that her peers are getting. Most days I’m physically and mentally exhausted.

I can get very discouraged and sad because she has to work ten times harder than the other kids her age, just to do everyday things.  Once in a while I even get jealous, not because I wish Stella were different.  I get jealous of the parents who can take their child to a birthday party and hang out with the other parents while their children all play together.  The parents at the park who can sit on a bench and check their Facebook feed while their kids are off playing on their own, I was once that parent- not anymore.  I get sad when I see Stella wanting to play with other kids but unsure of how to do it when she can’t talk like they do or even do what they do.  I wonder if she is sad too.

But I’m not suppose to say these things out loud.  People may think I’m ungrateful or judge me as a mother.  I’m not suppose to compare my child, her journey with others.  I know that!  But, I’m human and it happens even when I try to fight it.  And I totally beat myself up when I do start to compare.  I know that Stella will do things when she is ready to do them and I don’t need those reminders from parents of typical developing kiddos.

When I have those thoughts, it’s not because I wish she were different.  She is exactly who she is meant to be and I’m okay with that 99% of the time.  So let me have my 1% where I feel all the feels and if I need to vent or share those feelings, let me.  But don’t feel sorry for me!  Don’t judge me!  Just listen to me! Know that raising a child with special needs can be lonely.  Know that sometimes I just need an ear to listen with no commentary.  Never forget that I love my child unconditionally.

How you should respond to parent of a child with special needs

Want to know what you should do when one of your friends is complaining, crying, screaming, or just sharing their feelings about their child with special needs?  How do you treat a parent of a child with special needs?

  1. LISTEN!  Do not judge!  Do not give advice!  Do not try to make it better!  Just LISTEN!
  2. Offer to help– You may offer to babysit though she probably will not accept it. She will appreciate the kind gesture.
  3. Give her a break-Take her out for a drink, we all need a break sometime!
  4. Give her a hug- help release those endorphins!
  5. Check in– Call every once in a while just to say hello and check in.
  6. Be Inclusive– Include her outing or events with and without your children.
  7. Praise her– Tell her she’s doing a great job!
  8. Ask questions– we love to talk about our little ones!
  9. Treat her normally-Don’t feel sorry for her, don’t act weird around her, act like you would around any other parent
  10. Be empathetic- “I bet that is a hard decision to make.”  That sounds like that must be hard.  How can I help?”

Always grateful

If you really know me, you know how grateful I am that Stella is mine!  Everyday,  I feel an overwhelming sense of joy and love for that girl!  Not a day goes by that she doesn’t make me smile, laugh or want to just squeeze her cuteness!  She has changed me in a way that only she can.  I want to be better because of her.  Because of her, I want to help create a better world for her to grow old in. There is no way I would ever change her but I have every intention on changing the way others see her.  So, I ask you to be mindful, be compassionate, be a good friend, and think before you speak.