Conference Post 3-It Ain’t all about the Kids.

fatigueDr. Kaufmann (who will be getting a few posts here) gave a presentation about the behavioral issues in Rett children and adults. I’m going to do it in two parts. I can’t find the booklet today that gives the title of the talk, which brings me to why I’m concentrating on the parent part today.

It was a difficult day. The whys are not important, there’s always reasons for it to be a difficult day and thankfully they’re infrequent now but a difficult day with a Rett child is HARD.

Dr. Kaufmann touched on a couple of positive things we as parents feel despite the difficulty of raising and caring for our children- an increased sense of patience and a sense of gratitude, perhaps meaning that the smallest achievement brings us great joy. But, he also pointed out some negative aspects that affect parents, some we know all too well-chronic stress (low cortisol levels indicative of such); anxiety/depression; frequent fatigue (omg, especially for new parents still dealing with the regression phase); guilt due to the inability to have time for other family members; less time for your self and work disruption.

I want to call out on a couple of these in particular and give my thoughts about them. The frequent fatigue will want to do  you in. It will sap every ounce of energy from you, you will forget EVERYTHING at least once, that the stove is on, that you had an appointment, what you went into the other room for, never mind where your keys are, I think 10 sets is a good number to have. It’s brutal, it’s ugly. Everyone in the family suffers. I look back on those days and have absolutely no idea how I survived, how my children survived, but I do know it wasn’t done well. Get help. Get help now. If your child is screaming through the night, don’t just accept that it’s Rett’s. It is Rett’s, but there’s more of an answer out there for your child, for you, for your family.

The guilt is going to be strong. Maybe you have other children, a spouse, older parents they all need you; it’s in your mind all the time…I have to do more, I have to be more, the PTA needs help; my dad has to be driven to the doctors; my children are in sports I have to get all the snacks this week; but, she’s having seizures, she’s sick, it’s too hot to go out….I’ve let everyone down. EVERYONE. That is what your brain is shouting at you sometimes. Poppycock. Anyone worth their salt will understand. Forget the PTA. It’s a miracle your children show up to school in clothes, especially early on. There are agencies that take the elderly to appointments, set that up if necessary. If you need another mom to step up, call them, offer to pay, but please do the shopping. Finding time for family is the most important, even though it is terribly hard, IF you have someone willing to watch your child, take the others out to the movies, the park, the zoo or just play a board game or do a jigsaw puzzle, without the “I have to….change your sister, give her medicine, check on her etc” I wish could have done more of that. And, if you’re married, you need time with your spouse, ALONE, even if it’s just a bit here and there. None of this will be easy, but in the end at least you can say you tried. And trying is all that we can do.

Work interruption- a very serious issue, and I can’t help but want to just scoff at the simplicity of two little words with an impact like a sledge hammer. How each person handles this is an individual choice (sometimes) other times there is no choice. That’s just the way it is. So, I would say to anyone, not just a special needs parent, do not let your self worth rely upon what you do for a living. Each person is more than the sum of their paycheck. I believe a person’s worth comes from within, are you kind, compassionate, ready to fight for your child, be an advocate, TRY to find time with your other children, your partner. To work is a necessity, but it is so often denied us, so we must find other ways to enable self worth and to deal with all those issues above.

Dr. Kaufman  gave some tips on this as well. He reminded us that these factors are not static. As the child develops and parents adjust, many of these factors can be mitigated, (I say in addition to medication for the parent and the child, but that is my personal belief, everyone should do as they feel comfortable) and he pointed out that our sense of positivity should not be success based ie: I’ll be happy when…, because that particular “when” may not happen.

Some of the things he said to try and do may be very difficult mostly because they take time, and on a day like today, I think to myself “all I want to do is go to sleep”; but, he suggested writing down 3 things you are grateful for each day, take 2 minutes to write about a positive experience and exercise 10 minutes per day.

Well, I definitely got 10 minutes of exercise today, some in a good way, but mostly chasing a child around the house who wanted to go outside and not stay in her nice, cool, air conditioned room. I’m taking the time to write about the conference, which was definitely a positive experience, but if I was being truthful the most positive thing about today is that Katie is asleep and tomorrow is another day. And there are three things I am grateful for, even on such a hard day as today…1. Many people came to my aid during my emotional turmoil of whether I mishandled a moment with a Muslim family. 2. Writing this blog post reminds me of one of the funniest moments of when my oldest was in first grade…It was parent conference week, her conference was on Wed. I go to it and the teacher says ..”we’ve missed Debbie this week. Is she sick?” And I say, you mean there was school???? (there wasn’t when she was in Kindergarten) and then I busted out laughing, so a funny thing I forgot when fatigue was in full throttle- I forgot to bring my kid to school. ha ha ha.  3. Katie is asleep and even still I can here her say “mommy”.

Be strong everyone, take care of yourselves. Good night.



This entry was posted in anxiety in Rett syndrome, Dr. Walter Kaufmann, Rett syndrome conference 2016, Special needs siblings, Trail to a Texas Trial and tagged , , , , . Bookmark the permalink.

One Response to Conference Post 3-It Ain’t all about the Kids.

  1. Judy Strouhal says:

    Thank you Mel……I needed this.

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