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A blog about our busy family with two amazing kids, one of whom happens to have Down syndrome!

Monday, October 31, 2016

Struggle Bus

Time for a post to round out Down syndrome awareness month. Not that I've done any other posts this month. This is not unicorns and rainbows.

Lauren is riding the struggle bus lately with behavior. Part of it is because I baby her and she acts a totally different way with me than she does for other people. And I've spoiled her rotten and she wants to be held 24/7. My back hurts a lot due to the lifting. She's learned to jump as I'm picking her up so that's really helpful! It's also super cute so that's an added benefit.

She had a meltdown at Toys R Us this weekend of epic proportions because I dared to make her stop sitting on a ride on toy. I ended up practically dragging her to the car to get her adaptive stroller to contain her. My Ryan was so super helpful during this time, asking if he could unlock the car for me, carried the keys, etc. Yesterday at a birthday party she got upset and hit me because I was trying to move her from one place to another. This is tough for me because Ryan never did this. He was always a fairly easy kid to reason with. I've tried, it does not work with Lauren. When she is fighting me and trying to run away from me, I can't physically manage her anymore when she's literally kicking and screaming. As soon as I put her down, she's fine. But she's also running away from me. Thank God my dad was with us at the birthday party! And my sister helped me keep an eye on both kids, on top of watching her own two kids.

At one point he did sigh and quietly say, "Mom, it's really hard sometimes having a sister with Down syndrome.". It made me so sad! I just gave him a hug and said, "I know buddy. You are the best brother for her!" I was so glad he was able to verbalize his feelings. I'm sure it IS hard for him sometimes. And he almost never complains.

I'm not sure if it's just that she's a fournado or a developmental phase. But lately, This. Is. Hard. I feel like I'm failing her more often than not. I feel like motherhood is not something I'm good at anymore because I don't know how to parent her in public when she's misbehaving. At home I can put her in a time out, take things away, speak more firmly. In public she doesn't have a bedroom for time outs. I feel like I can't yell at her or people will think I'm abusing my disabled child.

I feel like I'm failing Ryan because he almost never comes first and that's not fair. I did sign him up for soccer on Saturday mornings and he loved it. Just he and I went and we got a Slurpee afterward.

My mom and I talked about this recently after another behavior struggle at a family party. I said it makes me upset when she misbehaves like that in public because I don't want anyone to think my life is hard. She said, "But sometimes it is. It's okay for people to see real life.". The hard part is that I don't want anyone feeling sorry for me or for us. I would choose her again and again and again.

Sigh. I'm thankful for my stash of Halloween candy and good wine.


  1. Mya usually struggles behaviorally when she is having a hard time communicating what she wants. This includes her simply wanted to do what she wants to do. She set her mind on something and she wont stop until she has done what she set out to do or I physically stop her. I just know that I can't go places on my own unless she will be in the stroller 100% of the time. The only exception to this rule is at the doctors office in the confines of the examination room and it is always a wild house! All of my kids struggle with the amount of attention they receive from Brian and I, but honestly I think that would be the case in any family that has multiple young siblings. You are a great mom and doing a wonderful job with both your kids. Nichole Davis (for some reason it is posting under my husbands email.)

  2. Jackie, from the little I have seen, you are an amazing mother to both kids. It is hard when you work, parent, wife and still try to be who you are meant to be. No matter special needs or not, you will in all walks of life give more attention to one over the other. That is a struggle all of us Moms feel. Society shows these moms that do it all and look like they have just walked off the run way. That is not reality. What we face every day is reality. Do not feel that you are alone, we are all behind you. Please do not hesitate to call on me, I am ome during the day and am not that far, even if it is just an hour break. I get it. John is the youngest of my 4 kids, and each and everone is different and I would not have it any other way. Wendy