Apr 4, 2012

I Just Don't Get It....And I Never Will

I hear from time to time from people that they don't know how I do it. It seems impossible to them to raise a child with special needs on top of having three kids a whopping 21 months apart. Well my answer has always been "I don't have a choice." And for me, that's the truth. I prayed for these babies, I begged God to give me babies. And sometimes I think he chuckles when I tell Him that I'm overwhelmed with my life since I asked for it.

Isabella 23 months Mark and Molly 2 months

But I now realize that moms with special needs children do have a choice. They can choose to fight for their kid by getting them the services that they need and working tirelessly with them so they have the best life possible. Or they can put their head in the sand and ignore the problem.

I never thought I would meet a mom that would refuse to get her child help.

Allow me to set the stage a little.

When Mark and Molly were three days old a new baby was placed in the spot next to Molly in the NICU. She was a full term baby that wasn't doing very well. When we got moved to the special care nursery, this little girl was moved with us. So I spent weeks next to this mom untill the happy day when her daughter finally got to go home.

Fast forward from January of 2010 to February 2012

Brett is walking down our street and the NICU mom comes out of a house and recognizes Brett. They start talking a little and she tells him the her daughter has Cerebral Palsy too. What a small world right? I wonder what the odds are of all this happening?

I went down a few days later to talk to her and I was shocked to my core.

I asked her how her daughter was doing and she said that she still wasn't able to eat solid food and that she wasn't crawling yet. (Keep in mind that she's over the age of 2) I told her that I was sorry and I asked her what her therapist were doing to help her. She said that her daughter wasn't getting any therapy since she didn't see the point. Her daughter would improve on her own and that some kids are just delayed.

Yep you read that right.

I was stunned! I didn't know what to say. OK fine I didn't know anything socially acceptable to say. I had plenty of things to say. I fumbled for words and then left a few minutes later.

So here is my delima. This is none of my business. But I feel the need to make it my business and I don't know how to talk to this woman. Clearly medical professionals are telling her that her kid needs help. And she is choosing to do nothing about it. So how can I possibly get through to her? I'm not sure that I can, but I've decided that the best approach is to tell her how therapy has helped Mark. I thought I could try to catch her coming home from work since I've stalked her learned her routine. I plan on mentioning what Mark's therapists are doing with him and how much progress he's made. Maybe then she'll see her situation with hope.

I can't believe that she isn't fighting for her daughter! Why doesn't she get it? I know her doctors are telling her that the first few years are critical when it comes to intervention. I always assumed that parents of special needs children felt the way I do "I do it because I don't have a choice. This is my life and I love my kids so I fight for them." I'll never take it for granted that a parent fights for their kid again. I guess I was naive in thinking that in the first place.

I would love some advice on this subject. Have you ever encountered a parent like this before? And it's OK to tell me to mind my own business, my husband did.

4 comments:

  1. Yes I have two people I know who are the same way. It makes me mad. They don't want to listen or realize how much they are hurting their child. They blow it off.

    Anytime I bring up what my daughter has accomplish I get comments like, "that's nice I am glad that is working for her but it isn't what we want for our family."

    They only want to use natural remedies which I am for to some extent but it it won't take away the condition like they think it will.

    I just do the only thing I can do and that is pray for them and try not to get to mad about what they are doing. Hard not to get upset about their choices.

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  2. It would be hard not to say anything.

    Maybe email a few resources to her? Places she can go? Or talk about what you did- w/o saying hey, you need to do this, but just telling her about it might make her realize there's more for her to do.

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  3. I think sharing resources is a fantastic idea like Shell said. My son was getting services through early intervention and jsut wasn't making progress. We managed to get our ped to refer us to a private agency and had intensive OT and ST. I was SHOCKED at how quickly he progressed! There was a woman down the street whose son was few days younger than mine and had some definite delays. I just sung the praises of the agency and told her about financial assistance available. She brushed me off saying "my older kid didn't get help until he started school and he is fine." When in reality both her boys are on the spectrum and it would have made a HUGE difference startign services at 2-3 vs..5!

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  4. I don't really have any specific advice unfortunately except to pray for the mom to open her eyes and her heart. It's so hard to understand why she wouldn't want to move heaven and earth for her child. I think some people are in a little bit of denial, so getting care for their child would make it a reality, something they don't want to deal with. Unfortunately, I heard and saw a lot of cases when Q was in the hospital about parents delaying getting their child treatment for their heart conditions, some to the point where you could call it medical neglect and children got dangerously close or even actually went into heart failure. It's incredibly sad, frustrating and just plain ole not fair to the child. As a mom who struggled to get pregnant in the first place, I know what a miracle these children are (not that moms that didn't have infertility battles don't realize that!) --- so when I see people who seemingly don't realize and embrace that gift, it irritates me to the core to say the least. Anyway, sorry this is a novel but it hit a nerve with me : ) Good luck. I'll pray for you both as you contemplate what to do. (Side note: I'm pretty sure I emailed you recently that I don't know how you do what you do : ) and after I emailed that response, I realized it was such a dumb thing to say! I get it all the time from people, "how do you raise twin toddlers, I can barely keep up with one?" - and my default answer is the pretty much the same as yours... what choice do I have? These were the cards I was dealt and we just go day by day and make it work. And while there are tough moments where I want to scream and be like "why me?", it mostly is such a sweet, fun experience that I feel blessed to enjoy). And with that, I'll sign off now : ) Sorry for the long comment!!!

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