Wednesday, July 01, 2009

Aspiring to Give Great Care, Taking Parenting to the Next Level

"It is not how much we give, but how much love we put into giving." ~Mother Teresa

I remember the Individual Education Plans (IEPs) at school. Once a year, I would receive the invitation to attend and every year I would attend. The IEPs is where the education planning for a special needs child would take place. During that time, the goals would be discussed and whatever accommodations that were required, would be included so the education plan could be carried out. It was a bit intimidating at first. I would walk into the room, with twelve other people. The principal would often attend at those times, plus the Special Education Administrator for the district, all of the therapists-physical, occupational and speech, along with his teachers. It was intimidating because I wasn’t certain of this process and how it worked and I wanted to make sure I did my best. I didn’t have any training in these IEPs but I knew they were important. It was also challenging because whatever accommodations needed to be made, often cost money, something that any school district, never had enough of. For example, when your child required a one on one aide to assist them in the classroom, well, that cost money. My job was to secure the aide, their job was to conserve their dollars. I needed to attend these meetings, be present, and be fully prepared to state my case, so that I could negotiate the absolute best education for Dear Son. The key word here is “negotiate” because that is what you had to do.

It was difficult for me in those early days, having to learn the whole IEP system and to negotiate for Dear Son. I would make sure on the day of the IEP, that I was impeccably groomed, my hair and nails were perfect and that I always wore a suit. This was the early nineties and that is what professional women did. I wore a suit to these IEPs not because I had to, but because I wanted to send a message that I expected the best for Dear Son and I would take nothing less. The other thing that made it easier for me, was not to view myself at Dear Son’s mother, who was negotiating his education, but to view Dear Son as my “client”. When I was at work and working with clients, I always wanted to give my best to them. And who should I advocate more for, than Dear Son? Once I viewed Dear Son as my “client” it was a lot easier for me to go into these meetings and negotiate his education since it took a little of the emotion out of the equation and made it easier for me to be firm with them on what I wanted. And they did take me seriously.

I remember taking the time weeks before the IEP, to create some good goals for Dear Son and then created a list of what I wanted for him that year. His physical and mental disabilities were so profound that he required a one on one aide. For that, I would get a letter from his physician detailing his need for the aide. Some years, I would sit at the table in the meeting for a long time, because I would refuse to budge on an issue for Dear Son. In order for an IEP to work, everyone in the room had to come to an agreement. Meaning the district would agree to pay for the services before they would put it in writing. And with the plethora of special needs children and a limited number of dollars, their goals were to conserve dollars whenever they could. My goal, as Dear Son’s mother, was to negotiate the absolute best education that I could for him, to give him the best chance at maximizing potential. They learned that we could work out an agreement ahead of time, or we’d be sitting at that table, a very long while.

It wasn’t long before the district coordinator would contact me a few weeks prior to our IEP. At that time, she would ask me for my goals and what I was looking for in terms of Dear Son’s education. I would know in my head what I wanted for Dear Son so I would ask for the moon, knowing that I would negotiate from there, giving up some things and then ultimately sealing the deal with precisely what I felt was best for Dear Son. Some years, I had to hire an attorney to get some input on the law to back up my case.These meetings/calls were tense at first but over the years, we became good friends. She knew that I wanted the best for Dear Son and I knew that her job was to conserve dollars. To negotiate the best for him, meant understanding the state laws, understanding the IEP process and knowing what could and could not be done.

But the IEP was just one example of giving my best to Dear Son. I made it my goal a long time ago, to give him the best care that I possibly could. That means, negotiating for the best education, getting him the best medical care and most important giving him my best every day.

Every time, he is released from the hospital, I am grateful. I view the fact that he recovered and that I have more days to spend with him as a gift. Each time, I know we are closer to the end. And because of that, every day is precious. I am so thankful that I get the opportunity to care for him. I try to show that in my actions. Not just giving him his meds on time or changing all of his diapers, but in my attitude. It’s starting every day with a smile and kisses. It’s being excited to see him. It’s taking the time to write up the instructions for summer school so that everyone has what they need and that Dear Son gets his feeding on time. It’s making the extra calls so that he receives the air conditioned bus since he can’t sweat and can overheat easily. It’s taking the time every day after school to read the note together about what happened that day and talking to him about it. It’s constantly raising the bar for myself and for others so that he has the best care that he can and the best life. It’s what I would want for my most cherished possession, my Dear Son.

And that brings me to how we spend our time. I was thinking today that as a nation, we don’t put enough time into our children. I mean, how often do we google things on the internet like, how to improve our diets, how to improve our health, how to save money or how to do just about anything. Or when we look at continuing education…how often are we taking classes to stay competitive in our field? But where are the classes on how to be a good mother or father or how to be a better parent? Who googles that when the kids are ten years old?

And how many of us can define our neighbors by their hobbies? We know the neighbor that is passionate about their yard or their flowers or the man is always washing and detailing his car and parks it at an angle in their own garage, as if it were a showroom. But which one is the neighbor that gives their children the best “care” every day or who puts their children first? You have to think hard about that one.

We see parenting examples all the time, not all of them good. We have the whole Jon and Kate Plus Eight saga of a family in crisis and yet, the show, I mean money, must go on. Talk about selling out for your children. I don’t think airing the family’s crisis and dirty laundry for millions to watch is giving the best to your children. I never thought Kate was the best parent and her total lack of disrespect for her husband, for all of the children to see, along with her controlling ways, is a train wreck. Certainly Jon plays a part in this but the mental abuse of Jon is over the top. I stopped watching that show many years ago. I can’t figure out for a minute why this woman isn’t in therapy. The children never seem happy and are always crying and yet she goes out on speaking tours. Is this something we want any parent to emulate?

And then we have the Duggar family with eighteen children. You have wonderful parents, with great values who live their religion and who give their time to them. You see that difference and yet, those people are wonderful parents and yet, the Jon and Kate, gets more press.

I often see parents of children spend a lot of time saving for college or working on getting material things for their children, yet are too busy texting on their blackberry to be fully present in the moment with their kids at the park. Dear Son and I walk a lot and I can’t tell you the number of times the parent is on the phone while out with the kids on a walk.

Giving great care to our children, and especially special needs children, is a goal we need to aspire to. And great care means not only what we can provide, but how we interact with them and giving our time to them. It’s making them our first priority and not our last.

I remember teaching a class on organizing for special needs children last year. I was talking to one of the parents and she had an issue at school with her daughter not wanting to eat for the staff and the staff not understanding how to feed her. As a result, the child didn’t eat all day and then consume a ton of calories when she got home at 3:30 p.m. I talked to the mother on how that wasn’t o.k. and that no child should go to school and not eat all day. We wouldn’t do it and we shouldn’t allow it to happen for our kids. Instead, I talked to her and gave her some suggestions on how she could include certain things in the IEP so that her daughter could get help with the feeding and then going to school to make sure that the staff understood how to feed her daughter and that it was getting done. It was difficult for this mother to speak up so that factored in to the issue as well. These things are the important things in life.

Caring for special needs children is time consuming, monotonous and very often boring. There are days when I used to think if I have to change another diaper, I was going to scream. But what changed all of that was Dear Son’s hospitalizations. Each time he pulled through, I would be thankful for my “gift”. I would treat every day thereafter as something special, another day that I got to spend my Dear Son. Every day became an opportunity to get in some more memories, to see him grow or to see him smile. I learned to change those diapers happily for changing them was always better than not having one to change.

But where is the reward in good care? Where is the reward in making your children’s life better? I was changing Dear Son’s fourth diaper yesterday in just over two hours. He managed to have his bowel movements separate from his urinations making for a lot of work. Changing a diaper for a 185 pound man who can’t roll over on his own, is a lot more work than for a one year old child. I changed diaper after diaper, among other things. It seemed like the morning would never end and yet it was only 8:30 a.m. As I finished the fourth diaper, Dear Son moved his left elbow up in the air slightly. Dear Son has never had any control of his arms and hands his whole life. Just this last year, through a lot of hard work by his teacher, he has gained some control of them. Each day, I check his left arm, if it’s loose and not tense, I know he can give me a hug. I wrap it around my neck and I give Dear Son a hug back and kiss his neck repeatedly. He smiles the whole time and has a sparkle in his eye. So when he raised his arm up, I took it and tried to wrap it around my neck for a hug, but it was too tight and he couldn’t do it. Instead, I wrapped my arms around him to kiss his neck. When I leaned over he gave me a big lick on my cheek, which is how he gives a kiss. I thought to myself that this is the reward for great care. A giant lick. And that is something to aspire to.

Note: Dear Son is seventeen years old and suffers from a progressive neurological disease and intractable seizures as a result of a random mutation of the ARX gene. This mutation causes infantile spasms, dystonia and severe mental retardation. You can read more about Dear Son and his mutation in the Journal of Neurology. The link is in my sidebar.
Photo Credits: The above photo is of my living room.
FYI-The other day I had a problem posting in blogger because I could not copy from Microsoft Word and paste into blogger. The problem was due to my recent upgrade to Internet Explorer 8; I uninstalled IE8 last night and I no longer have the issue. I am still having an issue getting my feeds to update. If anyone has a solution for that, I'd love to hear it.


Anne K. said...

What a fascinating and beautiful post. I never knew much about the whole IEP process and the way you describe it was very telling -- yes, the way you present yourself makes a difference in the outcome. Especially appreciate your thoughts on priorities, attitudes, and keeping children first - something that is definitely not happening in the Jon & Kate debacle.

Thanks as always for your thoughts and think of you and Dear Son often.

Claire said...

Interestingly enough, I did the exact opposite in terms of my personal presentation at meetings. I never did the corporate thing. I dressed casually to let them know that their suits and power games did not intimidate me in any way. They were just people in a room and my kid was a person and not just another annoying IEP to prepare. It was also good to remind them that their salaries came out of my pockets...I was the paying client, my daughter the reason they had a job at all. Always worked...until there weren't any nurses any more!

As a teacher myself, I once used to judge parents harshly for the way they treated their children. Then I learned that most parents only learned how to parent from their own moms and dads, that many struggle with a load of emotional baggage, but that in the end, they really love their kids. Parents can be weak and society as a whole does not honour their work..nor has feminism gone out of its way to honour traditional female roles. Decent maternity leave, and an end to corporate hogging of its employees' time would go a long way in making things better.

Rambling Round said...

Wonderful post. If I had it all to do over again, I would borrow money if necessary to hire an attorney as soon as my child entered the school system. No matter how many workshops I attended or how much I studied the law, I could never keep up with all the changes from year to year to feel completely confident about what I was asking for in an IEP meeting. But then, I had two other children with IEPS as well! It got confusing!
Anyway, your post is a great encourager for us special needs parents. We had the feeding issue at school too, and I am always amazed that a teenager can learn to feed my child much easier than some adults. I think younger people don't have the "fear factor" to contend with.

Also appreciate the issue of caring for our children with the right attitude and enjoying them for who they are.

Thank you!

Poppy Q said...

Dream Mom, I think you do a fabulous job of looking after your boy. For any child, I think no matter what you do for them, how much money you spend - they just want to see your face light up when you see them.

Big hugs.

Anonymous said...

For the first time I can remember, I disagree with you. I think the Duggars are horrible.

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