Tag Archives: Special Needs

Toxic Relationships Must Go

August 14, 2015 By in Caregiver Tips & Tricks Tags: , , , , , , , 1 Comment

What do I mean by toxic relationship? There are a lot of different types. Someone can be…

  • Physically abusive
  • Emotionally abusive
  • Controlling

I’m sure there are others, but these are the main ones I’ve come across. Your child, especially a special needs child, is the best reason in the world to put an immediate end to these types of relationships. Typically these are discussed in the context of spousal abuse, but it also applies to friends and family members as well. Here are some examples of toxic behavior…

  • A family member hits your child out of anger for misbehaving with no communication as to what they did wrong or how to improve.
  • A friend, angry that you no longer see them, tells you how lazy you are for not getting together more often. They are persistent and continue to put you down, even going so far as to accuse you of making up your child’s health problems to avoid them.
  • A family member insists you make medical decisions for your child in the way they would like them made. They constantly seek information and even go so far as to call doctor’s offices to try and get information.  They may even lie to the office staff about their level of involvement in your child’s care in order to skirt HIPAA regulations.

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Three Signs You Need to Fire Your Child’s Home Nursing Agency

August 9, 2015 By in Caregiver Tips & Tricks Tags: , , , Leave a comment

Great tips for those who are frequently battling with their home nurse.

madvocator's avatarMadvocator Educational and Healthcare Advocacy Training

For those of us whose children require in-home nursing, agencies are often the first resource suggested to us by hospital personnel and discharge nurses. Because they have access to multiple nurses, agencies can often respond to the need for care quickly. Many hospitals suggest that families use agencies instead of independent nurses because they assume that the quality of care is managed more closely in agency settings.

By contrast, most families who use home nursing have found that agency nurses are often less invested in the care of their patients, as they can simply quit and find another agency with little consequence. The way many agencies are managed contributes to the poor quality of care some families receive from agencies, since the nurses are bounced from one case to the next when families are dissatisfied with the care their child is receiving. We had this experience recently with an agency…

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Dealing with, What if?

August 3, 2015 By in Caregiver Health and Wellness Tags: , , , , , , , , , , , Leave a comment

This is a fairly typical problem, but takes on a whole different form when applied to the health difficulties of a loved one. When it’s your child, it can be completely overwhelming to think about all the different possible scenarios that could happen. Every procedure has risks. Every time your child goes into the doctor’s office they could get sick (and for many special needs kids, that’s no minor thing).

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Caring for a Child with Special Needs has Been a Growth Opportunity

July 31, 2015 By in Observations Tags: , , , , , , , , , , , Leave a comment

In my experience, when people look for growth opportunities they usually talk about things like traveling, training, or networking with a specific community of people. I’ve done all of these things, and they certainly do expand your horizons. For me, none of them have done nearly as much to grow me as a person as caring for our son with feeding difficulties.

After talking to other moms, I’ve come to understand it’s different to care for a child without health problems. Then, you’re balancing between how much attention is appropriate to give them versus how much independence you can gain for yourself to accomplish your tasks for that day. The balance is different for us. We know exactly how much attention our son needs, and most of it is spent making sure he’s fed and actively performing his assigned physical therapy exercises. I don’t think of it as less time for him is more time for me to do what I need to do. Less time for him is slower progress toward walking and crawling independently.

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Eating Out with a Tubie

July 24, 2015 By in Feeding Tube Tags: , , , , , , , , , , , 7 Comments

Waiter/Waitress: “Would you like a meal for him/her?”
Parent(s): “No thanks, he already ate before we left home. He’ll share with us if he wants something.”

This is an all too familiar experience for parents with children that either can’t or don’t want to eat. Continue reading →

Deal with Tomorrow When it Comes

July 20, 2015 By in Caregiver Health and Wellness Tags: , , , , , , , 1 Comment
Deal with Tomorrow When it Comes

It’s difficult, when your child has medical difficulties, not to worry about what tomorrow brings. Good days take turns with bad ones. On good days you worry a bad day is next. On bad days you worry tomorrow will be worse. When bad days chain together it feels like it’ll never end. Our minds are talented at focusing on the negative. Bringing your thoughts toward the positive can bring a significant improvement to how you feel about your life.

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RQ, What Health Problems is Your Son Struggling With?

July 18, 2015 By in Our Family's Journey Tags: , , , , , , , , , , , 2 Comments

I was recently asked by a reader what our son is struggling with. I had avoided discussing it because I didn’t want to burden anyone with the details. I wasn’t sure if the specifics would be unnecessary, and I didn’t want to make anyone uncomfortable. I realize now that it would help people understand where I’m coming from if I shared more about his situation.

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The Importance of Personal Best

July 13, 2015 By in Caregiver Health and Wellness Tags: , , , , , , , , , , , 5 Comments

Special needs children are like runners. Runners are one of the best groups I know as far as understanding what, “personal best,” really means. I can’t count how many times I’ve watched someone come yelling and cheering with excitement for losing a race. You look at them like they’ve gone mad, until they explained they cut a whole minute off their time. Well then, that’s a big deal! Once they explain you all celebrate together, because you don’t have to be the best to be awesome. You just have to keep getting better. So, what’s my point?

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A Special Needs Mom’s Never Ending Battle with Feelings of Inadequacy

June 26, 2015 By in Caregiver Health and Wellness Tags: , , , , , , , , , , , , 3 Comments

I spent the first twenty or so years of my life judging my worth by grades. After that, it was job title and salary. It wasn’t until almost thirty that my son was born and his medical difficulties turned everything I knew about how to measure myself upside down. Some Moms compete over who has the sickest child, but that’s just not me. I’m perfectly happy when my son needs less medical intervention than someone else’s. I want him to be able to blend into a crowd and let something define him besides his health. At the end of the day, I’m left with no way to define myself good or bad. It leaves me feeling completely out of my depth. For every new thing I learn, there’s ten more things I need to work on.

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