Special Needs Parenting: The delicate balance

I’ve been doing the whole special needs parenting thing for the better part of a decade now.  People always ask me what is the most difficult part. 

They are always surprised by my answer. To me,   the most difficult part of special needs parenting isn’t the kids,  it’s everything else. 

If all I had to do was physically care first my kids,  I could do that.  However,  everything else in life gets in the way and makes it even more challenging.  The biggest issue revolves around money. I have to be able to pay the bills.  If not,  we’d lose our home,  our car and that wouldn’t be good for anyone. 

If all I had to do was worry about bringing in an income,  I could do that.  The problem is that when you have a special needs child, especially 3 and with major health issues,  something always comes up to pull you away from work.

So,  honestly,  the toughest part of special needs parenting is find that ever so delicate balance that allows me to care for physically and provide for family,  all at the same time.

I would guess that many of you out there face the same struggle. 

This is the most recent example of what I mean by this struggle with finding balance. Maybe reading this will help people in general to better understand the constant,  never ending struggle that some families with special needs face in a daily basis.  Many people assume the challenge is the kids themselves but that’s not always the case.

The Balance

Last night was a rough night.  I camped out of the couch because Lizze was having issues with her restless legs syndrome and I figured that if she had more room,  maybe she could get comfortable. 

The couch isn’t the best for someone with chronic back problems and I going to pay for that for the next day or so.

I got Elliott off to school and will hopefully,  God willing,  get some work done today.  Lizze will at least be home today so that will be a big help.  I know that she will try her best.

This is a really fine balance because I have to weigh the importance of what I have to do against Lizze’s limits, which aren’t very high right now. I need to write in order to bring in an income,  but Lizze isn’t physically able to keep up with the boys,  especially Emmett. I usually have to put work on hold and deal with the boys during the day. 

If Lizze pushes herself to much,  she will be down for days,  like literally can’t get out of bed for days.

I’m also very worried about her health.  It has declined so much in the last year. The stress of everything is destroying her body. Asking her to do anything,  is just adding to the problem.  At the same time,  if I don’t work,  we don’t survive.

It’s one of those situations where doing the right thing is really difficult to do.  For starters,  figuring out the right thing to do isn’t easy,  and no matter what you decide,  someone pays a price.

It always feels like an impossible situation and it puts a great deal of stress on me because no matter what I do,  it won’t be good enough.

On the positive side,  I think we will be changing insurance carriers and so I’ll be able to get Lizze to the Cleveland Clinic for help.  That will be huge for the Lost and Tired family.  We need to get her back on her feet so she can once again enjoy and participate in life. 

Much easier said than done but that’s my mission at this point.

**Thanks for reading**

       -Lost and Tired

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Emile Hylle

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Dotdash

As a primary breadwinner and primary caregiver, I often have the feeling of being torn in two: I have to work to make money but I have to (and want to) take care of the kids. Something always feels as if it doesn't get done or done well enough or done on time. But add to that the higher demands that special needs children bring and I can see that your situation is like mine, but on high octane. It's hard even on low octane. I wish you all the best and think you are doing a terrific job.

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