Category Archives: Parenting

Where Are The Parents? {A Lesson On Not Judging Other Moms & Dads}

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{This is a beautifully written post by a mom that was raising a child who was disabled. It had me in tears so I wanted to share it with you all. Reminds us to never judge other parents because we don’t know their situation and what they go through on a daily basis.}

Where Are The Parents? By Sue Stuyvesant, Parent

Hey everyone. For those of you who don’t know me (I’m only an occasional poster) I am mom to Michelle, 9 years old, microcephalic, athetoid/spastic CP, cortical visual impairment, seizure disorder — and CUTE! OK, now for the reason I’m posting.

To make a long story short, earlier this week a question was asked by some nitwit official as to why there weren’t more parents (of special needs kids) involved in the local PTA and other issues that have come up that directly involve our kids. His question, which was passed on to me was, “Where are the parents?” I went home that night, started thinking – and boy was I pi**ed – and banged this “little” essay out the next day on my lunch break. By the way, I took copies of this to the school board meeting that night, gave it to a couple of influential people and it WILL get around………….

Where are the parents?

They are on the phone to doctors and hospitals and fighting with insurance companies, wading through the red tape in order that their child’s medical needs can be properly addressed. They are buried under a mountain of paperwork and medical bills, trying to make sense of a system that seems designed to confuse and intimidate all but the very savvy.

Where are the parents?

They are at home, diapering their 15 year old son, or trying to lift their 100 lb. daughter onto the toilet. They are spending an hour at each meal to feed a child who cannot chew, or laboriously and carefully feeding their child through a g-tube. They are administering medications, changing catheters and switching oxygen tanks.

Where are the parents?

They are sitting, bleary eyed and exhausted, in hospital emergency rooms, waiting for tests results to come back and wondering, “Is this the time when my child doesn’t pull through?” They are sitting patiently in hospital rooms as their child recovers from yet another surgery to lengthen hamstrings or straighten backs or repair a faulty internal organ. They are waiting in long lines in county clinics because no insurance company will touch their child.

Where are the parents?

They are sleeping in shifts because their child won’t sleep more than 2 or 3 hours a night, and must constantly be watched, lest he do himself, or another member of the family, harm. They are sitting at home with their child because family and friends are either too intimidated or too unwilling to help with child care and the state agencies that are designed to help are suffering cut backs of their own.

Where are the parents?

They are trying to spend time with their non-disabled children, as they try to make up for the extra time and effort that is critical to keeping their disabled child alive. They are struggling to keep a marriage together, because adversity does not always bring you closer. They are working 2 and sometime 3 jobs in order to keep up with the extra expenses. And sometimes they are a single parent struggling to do it all by themselves.

Where are the parents?

They are trying to survive in a society that pays lip service to helping those in need, as long as it doesn’t cost them anything. They are trying to patch their broken dreams together so that they might have some sort of normal life for their children and their families.

They are busy, trying to survive.

***

Sue Stuyvesant 10/15/96: Permission to duplicate or distribute this document is granted with the provision that the document remains intact. [Sue passed away in October 2003. Michelle passed away a week before she was to turn 18 in September 2005].

Special Needs Moms {A Look Inside}

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My cousin posted this on Facebook. I’m not sure of it’s origins but I just had to share :)

Guest Post: Easing Separation

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The following is a guest post by Jessica of I’m Not Your Everyday Average Mom!

I have recently started working out again. I figured after 18 months I can no longer say that I “just had” a baby and am carrying around baby weight. My husband wanted to get back into shape too from his “baby weight” and we decided that the best choice for our family was to join the local YMCA. They have a great work out facility, exercise classes for me, and a large adult pool plus a kiddy pool that is 10 degrees warmer than the adult pool. The kid’s pool stars off at 0 feet and slowly goes deeper so both of my kids can enjoy it without us holding them the whole time! Our kids’ favorite part of the YMCA is the gigantic water slide that we are allowed to take them down on. MY favorite part of the YMCA is the FREE childcare that is offered! They have an outdoor play area, an inside classroom area, and then a climber inside for kids to play on.

My son gets excited to go and play, but my daughter on the other hand develops superman like strength and clings onto me with a death grip. She then shakes her head back and forth and says “no, no, no, no!” I hate having to pry her off of me and hand her to the gal that works there, but I know in 5 minutes she will be laughing and running around with her brother and all of the other kids! It is just so heart wrenching to see her cry and get upset because I am leaving her there. It has gotten much better over the past 3 weeks and I feel like she is doing well because of a few things that I am doing.

I have had to remember what I learned in school about child development (I am a certified teacher birth-8th grade), and how to make transitions smoother for children.

Here are a few tips and things that I have been trying, and I find that they are working well!

  • Don’t sneak out…I know that it is hard not to, because you won’t have to see the melt down, but tell your child goodbye and that you will be back to pick them up soon! That way you are not disappearing, but telling your child what is going on.
  • Know the person’s name that is going to be looking after you child. I have been saying to my daughter “Look, it’s Amy! Remember her? She is going to play with you while mommy is in the gym!”
  • Let your child bring their blanket, stuffed animal, or other comfort item with them. I have been letting my daughter bring in her blanket. She usually ditches it within the first 10 min, but it helps her to have something of comfort when I leave.
  • Give them some extra cuddle and love time when you get back!

I know that things will get easier and she will soon LOVE to go and play! It is just going to take time!

What tips and tricks do you use when dropping off your child at a day care, or when leaving them with a sitter to make things easier?

To read more from Jessica visit her blog!
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