New Symptoms. What to do.

Over the course of my daughter’s 14.5 year life, we have had new symptoms pop up every couple years. This year was no exception. She began fainting. It first happened on the beach at 8:00 in the morning. If it … Continue reading →

Genetic Testing & DNA

Natalie has had LOTS of genetic testing.  There’s never been a diagnosis that encompasses more than one or two of her … issues. I remember her old neurologist – back when she had seizures – said he was sure she … Continue reading →

Quotes

My last post referenced the book The Shape Of the Eye by George Estreich.  I am enjoying this book so much.  I have not been able to read it as I normally read a book, blasting through from start to … Continue reading →

Confession

Here is my confession:  I’ve really been avoiding this blog, even though I love writing, I love helping people who are new at this tube feeding thing.

There have been other things to focus on – my older daughter got married last weekend, my second oldest son just graduated from nuclear engineering in the Navy and is home on leave before shipping out, my 3rd son has been playing for his high school’s volleyball team and Natalie just turned 13!

Running to her 13 balloons!:

Camera Competition

All good stuff, right? Right.

However, in all honesty, these days I have been quite weary and worn out from all the special needs.  All the meal making, all the meal feeding, the dependence.  At 13, Natalie cannot read a note I leave her, so I cannot leave her a note if I want to run to the store before she awakens.  She cannot possibly feed herself, although she eats part of a meal orally at least once a day.  So someone (mostly me) has to feed her 4 times a day.

I adore Natalie.  She brings such joy and sweetness to my life.  We have wonderful conversations that I enjoy so much.  She also has meltdowns that only I seem able to help her make sense of….

I wouldn’t trade her for anything.

But right now I am exhausted by it all. Thirteen years of it.  A very wise person that I turn to for support in this recurring situation tells me I need time out for myself.  So I told him I would go for a walk at the mall tonight (not to shop – but at the mall my outdoor allergies are not assaulted) because I can walk and relax and regain my sense of self. But I forgot! It is 9:30 and I am off schedule – still feeding her (although she is asleep) – because her brother had a volleyball game. Then we sang happy birthday, etc.  I cannot go to the mall now – even if I wanted to, I am just too tired.

So tomorrow I am going to leave the house right after her bus picks her up.  I am going to go have coffee with a dear friend.  I am going to sit and center myself, remind myself that I am worth taking care of – that I matter. This has always been a struggle for me – it is not new to Nat’s presence in my life.  But her presence makes it a bit harder to battle.  Lack of time and all.  But it is essential.

How about you? Do you struggle to stay whole in this special needs life?  How do you cope with it? What do you do?  I’d love to hear your experiences, thoughts, suggestions.  Right now, I need all the help I can get!

Carefully Controlled Hunger

As the mother of a child with a sensory processing disorder who doesn’t eat much orally, I am always on the alert to help her overcome the oral aversiveness that rules her life.  Little Miss is fed by g-tube for typically 100% of her calories, although she CAN eat.  There are no structural or functional problems that prevent her from eating by feeding herself.

That being said, in the past Little Miss was at risk of literally starving to death rather than eating enough to stay alive.

However.

Moving from elementary school to junior high provides a desire on her part to feed herself and be like other kids.  Positive peer pressure DOES exist!

Her school offers pizza at lunch twice a week, and she wants to be a big kid. She eats pizza for lunch! I send along real silverware so her teacher can cut it into tiny pieces (otherwise she will not eat it). Her blended meal typically comes home untouched on pizza days.

But on to the title of this post: Carefully Controlled Hunger is a technique encouraged years ago by my daughter’s speech pathologist (who was a feeding specialist). What this means is NOT feeding overnight (then the child isn’t hungry during the day), and underfeeding enough to keep my child hungry without endangering her health.  This was very difficult for me to master, emotionally, as we had come so close to losing Little Miss due to her refusal to eat as a baby. Of course, Little Miss’s doctor had to help us find the right calorie count to use this technique.  It wasn’t something we could figure out ourselves.

Now, she is 12. The effectiveness of this method has another opportunity to succeed.  When she is quite hungry, she goes right to the refrigerator and gets out a hot dog. She cuts it up, microwaves it and eats it herself. Or she will ask me to make pizza.

We recently had a few days when she has self-fed three times in one day! It wasn’t enough calories, but it was exciting!

Another key for us in getting our daughter to self-feed:  we have dinner together as a family most evenings.  We all sit down to a meal and I make sure to provide something she usually eats.  We all talk and laugh and eat – together – and this has proven to be a good strategy as well.

Never give up. Never.  Keep trying things.  It is amazing how much it helps my caregiver-exhaustion to have her eat just one meal!

G-tubes and Mouth Eating

Raising a child fed by g-tube for medical reasons has been a big part of my daily life for 12 years.  I would never have anticipated getting so casual about it all.  I can do it without looking, I can do it in the dark (I’m starting to sound like Dr. Seuss), I can do it at red lights while driving.   My other kids know how to do it and her next oldest sibling has been doing it since age 12!

Recently our “Little Miss” has graduated from 6th grade which means she’ll be going to Junior High next year.  She wants a “junior high bike” and since it is only 2 blocks from our home, she wants to bike to school every day.  She does not yet realize I’ll have to go with her to help her cross the street, but we’ll tackle that when the time comes.

Another preference that I think is related to this transitional period is that she wants to EAT SOMETHING AT EVERY MEAL WE HAVE!!! This is very exciting to me because the biggest reason our girlie-girl hasn’t eaten in the past is sensory intolerance.  In other words, she can chew (although this has its own challenges because of her low muscle tone and the difficulty coordinating the two sides of her body) and she can swallow.

The sensory intolerance affects her two different ways: the thought of putting food in her mouth is repulsive, and the texture of the food once in her mouth can be repulsive.  Those are the two biggest inhibitors.  We’ve done tons of therapies and training programs to work on this, with very tiny progress.  Desire turns out to be the greatest motivator.

She loves pizza, bologna, hot dogs, ice cream, french fries, black olives. Do you notice anything missing there??  Ha ha! Yup, no fruits or vegetables.  But I’ll worry about that later.  After all, I am still tube-feeding her as she is not consuming enough of other foods.  Maybe she will, I don’t know.

More on this tomorrow!

Autistic-Like?

Last night I went into Chicago to see a private screening of “Autistic-Like: Graham’s Story”.  This one hour film is made by a documentarian (no that is not a 10 year old) whose first son is “autistic-like”.

We see all the ads about autism being a 1 in 150 births factoid.  What it seems neuro-experts are uncovering is, within that number, a group that is “autistic-like”.  This means a bunch of similar symptoms but aren’t actually autistic.  The defining characteristic that separates the autistic group from the autistic-like group is whether or not they have difficulty communicating.

Heck.  I have difficulty communicating sometimes. I know. Not the same.

So, here’s what sometimes happens.  Kids with SPD or SID (sensory processing disorder or sensory integrative disorder: same thing) are DIAGNOSED with autism in order to get services that are covered by insurance.  This happens because SPD is not an official diagnosis in the DSM IV (the doctor’s dictionary of diagnoses).  SPD is currently under review to be an included diagnosis in DSM V.

Long explanation for basically this:  kids with SPD (like Little Miss) need intensive therapy early in life in order to function at their highest possible level and perhaps overcome SPD.  Why?  The brains pathways are like wrinkles in clothing… the longer they are kept in place, the harder it is to change them.  Auto-pilot.

A good way to evaluate your child for “differentness” is with a developmental therapist.   It can be hard for a parent to see these things and the sooner we get our child evaluated  the sooner we can help our child, or breathe a sigh of relief.

Here’s a good point of reference:  Go see the movie “Babies” (coming out soon) and compare your child with kids from all over the world. You’ll know if yours is “different”.

Here’s a picture of her g-tube site.

She’s been asleep for a while so the sheets have wrinkled her tummy!  Her Mic-Key button, as you can see, is very close to her belly button.

That white horizontal scar above and perpendicular to the unfastened button “lid”  is from a resect of her original g-tube site. Little Miss had two problems after 2 years with her original g-tube.  Her stomach began to prolapse (protrude outside her body through the g-tube channel) and a tissue deterioration – skin and underlying muscle  – so  an elliptical section had to be removed.  For some reason her scars become very wide as they heal, and papery appearing.

The only remaining location for her g-tube was very, very low on her abdomen and her stomach had to be stretched down and sewn to the abdominal wall there to keep everything in place.  So her feeds go into the very bottom of her stomach.

Everything works well, so we are very grateful! As far as what caused the tissue deterioration, no-one knew.  I  think, rightly or wrongly, that it may have been at least partly due to my overuse of the steroid cream meant to keep the granulation tissue at bay.  So try that Milk of Magnesium!

All of us have something to offer!

KarmaTube: Johnny the Bagger.

This is a short video and it points out that all of us have something beautiful to offer.  Whatever our limitations, whatever our kids needs, there IS something of beauty and value that comes from within us – planted there by God.

Yesterday Little Miss and I were at the doctor’s office verifying that she has strep throat.  After the exam we walked out of the exam room and the two docs were standing there in the hallway.  Little Miss broke out in song and dance “move like a funky monkey” – eliciting smiles and laughter from the docs.

This is a pattern throughout her life – the joy coming from her is infectious and a gift to everyone she shares it with!

You and your child have that something as well!  If you don’t know what it is yet, you will!

another year, another IEP!

Yesterday was IEP-including-transition-to-junior-high planning day at Little Miss’s school.  As the mother of a child with multiple “disabilities” and “special needs,” IEPs are never something to attend without advance planning and meditation!  (Think breathing and relaxing.)  That being said, our IEPs have mostly gone quite well.  Yesterday was no exception to the in-general rule.

Still.  I have a fair amount of trepidation when I think of my wee girl transferring to junior high school.  There are something like 800 kids in the two grades of the neighborhood junior high.  Granted: she’ll be in adaptive P.E. and adaptive music and in a self-contained classroom for all academics. This is good – for her.  As much as I’ve  pushed for inclusion in the past, the disparity between her understanding and skills compared to the gen. ed. kids her age is too HUGE for her to benefit from inclusion.

So next year includes WALKING to and from school (with mom of course), a locker with either a key – if she can manage it – or a push button opening.  Gym class will only require throwing a t-shirt on over her clothes before heading to the gym – and she’ll go every day.  Structure, consistency, and repetition are the key to a happy girl!  Gym and music every day will make her life happier.  Plus, gym every day decreases needed physical therapy minutes, which I like.

What?!  I LIKE that?  Yes.  I do.  She is nearly 12.  She has limited VERY limited bilateral coordination.  No doing jumping jacks!  That isn’t going to change with more P.T. So I want her to have fun.  Exercise needs to be enjoyable in order to willingly participate.

And it seems to me, most of us need more exercise.  maybe if we picked enjoyable methods we’d all be healthier.  Which is probably why my treadmill gathers so much dust!  Maybe they’ll let me help in gym class.  hahahaha.