Wednesday, January 11, 2012

Yes, My Child is Different and So Am I

 As a mom of a nine-year old girl who has special needs, I find that I grieve for her struggles at times. Could it be because we as a society struggle trying to find a place for our children in this my child can do such and such society? The future of their child is so much different than mine.

The term “special needs” refers to a wide range of developmental disabilities that can impair a person’s ability of movement, communicate, learn, self care and living independently.

I find that talking to parents at Dr offices and therapy that lots of parents experience what I call a sense of grief and even loss when they realize their child is different and won't have a normal life. It also seems that parents of children with any type of special needs may find it’s easier to talk with other parents who have had similar experiences. The reality is that the average person doesn't want to hear all about the struggles that our special needs child face. They seem to get the impression that we want pity. WE don't want pity. It's just a big part of our life.

Maybe, I have lost some of my personality on this journey of a mom with a child of special-needs. I can understand why at times others try to avoid you because, they may have to listen to something that involves my daughter’s health, and schooling. It's probably is boring to a parent with a normal child. I know when people ask others,”how or what you did this week”? It is more exciting and filled with fun adventures. Mine, is centered around how much therapy we did or didn't do or that we went to see this specialist. You may have to listen to the drama that unfolded in my household this week. Who really wants to listen to medical jargon and awkwardness of a special-needs child. Suddenly, you’re uncomfortable to be around and others stop saying hi or wanting to spend time with you. This is my daily routines, versus the moms who are raising their children and doing normal things. My life is so much different from 9 yrs ago.

The reality is that our lives can at times be consumed with the care of our special-needs child. It’s a different experience from the mom of a “normal child. We have the endless doctor’s visits, specialist, tears, worries of what if. It affects every aspect of our day down to how my normal son doesn’t live a normal life. Yes, it affects how other treat him at times. He doesn't get invitations for play-dates like some kids do.(not that he doesn't get any at all because, he does get some) He gets his feelings hurt from other kids about his sister. Kids make comments about her and can be just plain mean. One of the recent comments last week that he got, was another child telling him, “I am not really Bugs friend.""I just pretend to be her friend because, I have to be nice because my parents told me too." "I don't like playing with her because she is weird” He was speechless and very upset. I know kids are kids. It is a hard fact of life for a 6 yr old to have to deal with.

Having a child with special needs can feel isolating for everyone in the family. Having a child ask awkward questions and unusual behavior can isolate other parents with kids from you. While being ignored is not fun, being judged can feel horrible. Disabilities that are not always obvious to onlookers. It can provoke responses that are downright rude. Having a child stressed by their environment and they become frustrated is very stressful. Others mistake the meltdowns for misbehavior and bad parenting. Everyone has an opinion for how you should discipline your child not considering the child’s disability, because, they look normal.

I find that some activities that I do attend and I don't have my daughter with me that, I want to leave early. I hear of parents getting their kids together on play-dates and the parents doing things together. On the way home, I want to pull over to the side of the road and cry. I cry for her and her missing out on a normal childhood. Not having a friendship with someone who wants to spend time with her. I cry for how it affects my son. I do get my son together with others but, if feels forced on my end sometimes because, it could be that she will have to be around also. My son can be more mature in some areas and other areas he is lacking. He is different because of his sister. He has worries and fears that most kids don't even know exist. I still wouldn't change our life. My son is better in many ways because of his sister. He has a big heart, lots of empathy and compassion and other good qualities kids half his age don't have.

People want to do the right thing, and most people are well-meaning. It can be frustrating when other parents don’t share the same struggles and just don't get it. Maybe, I am just on the other side looking in and I just don't get it anymore. Don't get me wrong-I deal with the same things that a typical mom does. We have sibling rivals, just the reactions of the kids are unique. My kids have messy rooms, they like to play games, and laugh just like your kids do. I kiss and hug away the boo boos. They would rather play than do school on most occasions. Most importantly they have dreams of the future and feeling just like your kids do.

God gave me a gift. When I look at my child, I thank God for her. Even on the most difficult day I can praise Him. I find He is always there to listen to me. He puts parents with special needs on my heart that I have met on this journey of having a special child. It reminds me to pray for others and for a brief time I forget about my troubles and that grief of lost is turned into joy. 

1 comment:

  1. WOW, I can totally relate to this post. I found a song on you tube that I posted on my blog that you should listen to. It's about being a mom of a special needs child.
    http://www.twinglemommmy.com/2011/08/what-i-love-about-me-blog-hop_14.html

    The biggest thing that I wish people would understand is that I don't want your pitty, I just want you to understand that I'm different.

    ReplyDelete

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