A Mother’s Love for a Special Needs Child

A Mother’s Love Can’t Be Explained

We all know that Mother’s love their children, and we love them in a way we didn’t know we could, right?  But what about those children who have special needs? Some people who do not have special needs children can think that a parent might “love them less” because they aren’t perfect.  That they might “love them less” because they change the parents life style, change the life they pictured or believed they would have .  They think that they might “love them less” because they can’t leave their child with a sitter, or might not be able to go on vacations.  They think that the financial burden and loss of income because one parent might not be able to work outside the home, due to their child’s special needs… might cause them to “love them less”.  They think they might “love them less” because their child might not “fit in” with society, or cause trouble in public, or be difficult to even take in public because of all the needs they require.  They might even think that the parents would be “better off” if that child left this world early… so they can once again have a “normal life”.  Those “people” just have no idea. No way to understand the love a Mother has for her special needs child.

But guess what? … I think it somehow makes a mother’s love even stronger for a special needs child. Imagine a “child” being totally dependent on you for almost thirty years!  I have been a pediatric nurse for 30 years now. I have worked in children’s hospitals, Doctor’s offices and I’ve worked as a pediatric nurse case manager for a home health agency.  I have seen many many examples of how strong a mothers love can be, even for some children that do not respond to them… or respond in ways that others can recognize. For children that have cost them their careers, made them move into very small homes due to the financial crisis they now had to deal with, cost them their marriages because of the stress, cost them the life they wanted. I have seen so many cases… so many.

I recently had a cousin lose her daughter.  (pictured above) Her daughter, E….  was almost 30 years old.  She never spoke… ever ..except one time in church when she yelled “Amen” at the appropriate time. That was an awesome story to hear at her funeral!  They knew that E had something going on from the time she was a very small child. She was not hitting the normal milestones that other children her age were hitting. She didn’t talk, she had a strange gait to her walk, she would get angry easily (If I remember right. I did not live close to my cousin, so I didn’t know E very well… I only have a few memories with visits over the years). As she grew older, she required more and more care.  For the last several years she was unable to walk at all. She was not a small girl and she had to be lifted and completely cared for … by her parents.  My cousin and her husband did an unbelievable job taking care of her. Giving her every opportunity they could in order to help her, to make her life the best it could be for the body and the condition she endured.

 

They only discovered the actual diagnosis for what she had about two years ago. It is called   Pantothenate kinase-associated neurodegeneration (PKAN). They were told at that time that there had never been a case he knew of, where a child/adult lived to 30 years old.  E was 2 weeks away from her 30th birthday when she died.  She died at home, in her parents bed with her mom and dad with her.  They had been without electricity for a week prior to her death due to the terrible storms that went through at the end of June.  They had one room air conditioner with a generator and lived in that bedroom with her, to make her as comfortable as possible.

I went to her funeral. I had no idea how difficult it would be. Gut wrenching, fits perfectly. I have been to many funerals over my life time, and I have been to several funerals for children. But I’ve never had as hard a time as this one. (Other than my own Mom’s) . Maybe it was because I myself forgot the unbelievable amount of love a mother has for her child with special needs. The first strong tears came for me when I saw my Aunt 89 years old (Mom’s sister) ask to go up to the open casket again to see her. She just stroked her arm, touched her face and talked to her. My Aunt is the closest living relative I have, linked to my Mom. I miss my Mom so much and get to see my Aunt so little…I just adore her, and seeing her pain was SO hard.

After the service was over, they went to wheel the casket out… and all of a sudden all you could hear in this very quiet church, was my cousin, crying… no, sobbing for her daughter. The kind of crying that came deep deep from within her soul. Crying, like I’m not sure I’ve heard before. The pain she was suffering was incredible, pain like she had more than likely never experienced before. The paw bearers stopped and just stood there for about three or four minutes. The crying did not let up. There could not have been a single dry eye in the room hearing my cousin’s pain, the torture she was going through, knowing she would never see her daughter’s face again, never hold her or take care of her again. There is a piece of my cousin that left right then….a piece of her heart, her soul, that stayed with her daughter; stayed with her when they closed that casket, stayed with her as they wheeled her out of the church, stayed with her as she was lowered into the ground and was buried with her. She won’t get that piece of her heart, her soul back until she is back together with her in heaven.

 

It was right then, standing there crying myself; that I knew that a mothers love for a special needs child, could not be explained.  It was something that so many people might not understand…. but something so real. So precious. So wonderful. God is so gracious to give us what we need, give us the children that he wants us to be trusted with and to love. He could not have picked better parents for E, when he picked them. He knows the love a mother has for her child. Only God, and a mother herself can possibly know.

My love to you cuz, as you and your hubby heal and learn to live a life with your angel in heaven.

Organizing for the Special Needs Kids

Special Needs Kids can have some Special Need Supplies

I have worked as a pediatric nurse for 28 years and had 4 years working as a Nursing Case manager for Pediatric cases for In Home Nursing care. I speak from experience when I say …..”hats off to all of the families that have special needs children.” I know that you have challenges that most families can’t even dream of.

There are of course many levels of special needs or medically fragile children and care – from needing extra work books and tutoring to rearranging your entire house to accommodate wheelchairs, ventilators, lifts and IV poles.

Trying to organize your home may be tough…but can you imagine having to turn your family room in to a bedroom with a hospital bed, nursing care coming in and out, oxygen tanks, suction machines etc…. ? It can be an organizing nightmare.
Many of these families do not have the luxury of having outside help in taking care of their children.

The biggest tip I can give them in organizing their medical supplies are:
1) clear containers
2) Label ..label…label!

I particularly like using something like the above cart. I presently use it for a craft cart for my kids…but it is great for special needs supplies. It is on wheels and can be easily moved. The drawers are clear so it is easy to visualize what is inside..and it is plastic so it makes it very easy to label. There is also a surface on top. Great for being able to lay needed supplies for procedures like changing dressings.

These bins I am using for clothing….but it can be used for extra supplies. There might be attends, chux pads, dressing supplies etc. The key – label!!

Under the bed storage can be great for supplies that aren’t used as often.

Also…use that wall space! It might be with shelves, or peg board or magnetic boards.

Be Supportive To A Special Needs Family

Schedules are Important

Time Management is everything for a Special Needs Child

If you had medications every 1-2 hours, G-tube feeds every 4 hours, dressing changes everyday, physical therapy 3 times a week, occupational therapy 2 times a week, a tutor coming everyday, oh…wait don’t forget you have an appointment with the neurologist and physical medicine this week…and you have to be sure to order supplies this week. I almost forgot the respiratory company is coming to check on the O2 concentrator on Wednesday.

That is just one piece of the puzzle that some families have to deal with – who have special needs children.  Just put that on top of your schedule and if you have other children who have ball games and play dates.  Can you imagine?  Until you are in the shoes of someone who has a medical fragile child ….you just have no idea how much they go through and how much they have to deal with.

Schedules?  Essential for survival in this situation.  Their children’s lives revolve around schedules with medication, treatments and appointments. That is why a command center like I mentioned in my last post would be needed – or a centralized computer calendar or home calendar.

If you know of someone with a special needs child – if you are able, reach out to them…see if they need some help or just a supportive ear. They are carrying the weight of the world on their shoulders.

Command Central for a Special Needs Family

More than Ever a family with a Special Needs Child need to be organized

If you think you have a lot of mail coming into our home….just try to see what the mail box of a special needs family is like! They have the same amount of mail and papers coming into the house that we do…..but then they have a massive non-ending incoming stream of insurance papers, medical bills and statements, home health insurance, letters from Doctors, physical and occupational therapist paperwork and bills…and it goes on and one…

Command Centers

The Command Central pictured above of course would be anyone’s dream center. (This was from a Parade of Homes model home).
But you can make your own using this is a guideline. Here are some lower cost alternatives.

This is from Office Max…Peter Walsh inspired.  Love it.

This is sticky note/ dry erase organizer.  It is from PlanetSafe Planners.com.   I think this can be used in conjunction with other options.

This is my home made job board….grab a magnetic board and follow these instructions. I am thinking this could be used for medication time routines…G-tube feeding times, nurses schedules or just a job board.

Get a box of these magnets with the sticky back. I use old business cards and flip them to the blank side.

Peel off the back and put the business card or cut piece of paper/construction paper on the sticky part.

Then put whatever you want to on the front.

Having a place that everyone can see what needs to be done and when is essential in being able to run a smooth home. Calendar with Doctors appointment, sports schedules and adult commitments can help save many headaches in a very busy home.

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