School Districts, IEPs, Stress, & Peanut Butter Toast

Yep, I’m at it again with my bizarre connections.  Don’t worry, it will all become clear sooner or later.

A lasted only a few weeks in her pre-k class before it became glaringly apparent that she was not in the most appropriate setting for her needs.  She was becoming so stressed out at school that she began regressing at an alarming rate.  My sweet little girl was no longer making eye contact, threw tantrums at the drop of a hat, and refused to eat.  I gave it time, but when she started refusing the Pediasure I knew I couldn’t wait around any more.

I went the normal route of speaking to the teacher, who informed me that another staff member had questioned my daughter being in the class given the nature of her needs and that she, herself, was not comfortable handling some of A’s issues.

Before I go further I do want to clarify one major point.  I do not in any way, shape, or form blame the classroom teacher.  A’s teacher is a wonderful teacher/SLP who handles her class beautifully and is very good at what she does.  Unfortunately, she was not set up or trained to handle a child like mine.  Too often teachers take the blame when, in reality, the fault lies higher up the chain of command.  Now off the soapbox and back to where we were.

A few phone calls and in person chats later I felt completely stone-walled.  For some reason the higher ups in the district seemed to feel that their “snapshot” of my child gave them more knowledge than me and therefore they were better equipped to judge what was best for my daughter.

Yes, this would be where the stress part comes in.  Trying to get these folks to understand that even though my child was not a screaming wreck at school she was having issues.  After all, she came home every day she was there with a bloody lip and fingers from picking.  A didn’t feel safe enough to fall apart in the room so instead, she would withdraw, shut down, and pick (or bite) her lip until it was bloody.  Somehow, that never got noticed, even when I pointed it out.  Finally, after two weeks of rattling cages I think I am finally beginning to get somewhere.  I think what finally got through was when I pulled her from the class and explained to the principal and assistant principal in person, and over the phone to the district, was that A was not in a safe environment and I could not sit by and wait for them to do something.  Her needs were not being met and as her mother and her best advocate I was going to make sure that someone listened and took the necessary steps to correct the situation.

Oddly enough, it seemed to work.  We are now in “negotiations” with the district and hopefully a resolution will soon follow.  For now, they want to place her as an itinerant student.  Basically, that means that I will take her to the school a couple of days each week for her speech and PT .  This will allow the district to re-open her IEP and amend it to reflect any necessary accommodations that A would require to be successful within the classroom setting.  Of course, that could take the next 3 months, but it’s a step in the right direction and people are finally listening so I’ll take it!

Through these past two weeks, I’ve been working hard to get A back to where she was before all of this.  Happily, within one week of being home full-time again, her eye contact returned and the tantrums diminished (much to her brother’s relief I might add).  She is still struggling with food but is back to drinking the Pediasure so she’s at least getting something in her.  Thankfully, an answer to the eternal question (at least for this household), “What solid, with a decent calorie count, will you eat?” popped up tonight in the form of peanut butter toast.

Yes, good old, plain and simple peanut butter toast won the what will you eat for dinner lottery.  In fact, it was such a big winner that she ate almost 2 whole pieces along with her 3oz of yogurt, Pediasure, lemonade, and a cookie.  I suppose I should have thought of it sooner since she’s eaten it before, but it had fallen out of rotation during one of her brief regressions and I forgot all about it.

Then again…given how much peanut butter toast I ate when I was pregnant maybe it shouldn’t be that much of a surprise that she does really like it.  Oh well, we’ll never know.  I’m just glad she ate a decent amount today and seems to be doing better.   At this rate I might just get to try out a few new recipes I’ve found before the summer heat gets here and really kills my urge to cook and bake.  Guess I’d better freeze some of those homemade chocolate graham crackers (http://weelicious.com/2012/04/09/chocolate-graham-crackers/)before that happens!

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Christmas In Finicky Feeding Land!

Yes, I know.  Technically, Christmas day was 5 days ago, but I’m one of those who likes to celebrate the full 12 days of Christmas.  And my kids don’t mind too much either.   I think it’s because of the music and the food.  After all, this is a season of amazingly good (and rich) food, and there is nothing easier to get a kid to eat than a cookie they helped to make.  Especially when you’re dancing to music while you bake.

Yes, it’s true, I let A help me with our Christmas cookies this year.  Crazy? Probably.  Worth it? Definitely.

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She touched it!

Let’s face it, you don’t get much more sensory intensive than mixing, rolling, and sprinkling cookie dough.  Okay, so she didn’t exactly help with the rolling part, but she did touch the dough and was quite proud of herself for doing so.

She helped squash them with the glass (great for the “heavy work” end of therapy).  Yes, I kept a hand on the cup.  Real glass and tile floors don’t play well together.

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Then it was time for sprinkles.  Who doesn’t love sprinkles?  Great for fine motor skills (hello pincer grasp!) and motor control (on the cookies not the baking sheet if you please!).

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Who knew baking could be so therapeutic?

Of course, she had to find something to amuse herself  for the 12 minutes it took for the cookies to bake and the 15 minutes it took for them to cool.  Thank the Lord for puzzles!

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And, yes, she does those on her own.  I wish I was making that up but my almost 3 year old is rather bright (not parental bias people, I have the assessments to prove it!).

After all that hard work, it’s time for taste testing!  With a nice cup of cold milk of course!

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“Yummy, yummy in tummy!”

Actually, she didn’t eat that cookie.  A decided she wanted gingerbread biscotti instead so she fed her cookie to me.   No complaints here!

What’s that?  She ate biscotti?  My super picky, super sensitive child ate hard, crunchy biscotti?

Yes, yes she did.  Only it wasn’t that hard and crunchy.  And there was white chocolate involved.

It’s a recipe that I found in a Family Fun magazine for kid-friendly, easy to make holiday treats.  And yes, it is actually very easy.  Here’s the link for the recipe: http://www.parents.com/recipe/gingerbread-biscotti/

While traditional Christmas dinner is definitely not A’s cup of tea, I have found ways around that thanks to the variety of seasonal foods that I love to make.  Granted, her Christmas dinner consisted of a GoGo Squeeze (I don’t think I would survive without those), 2 herb rolls (homemade, time consuming, but very yummy), PediaSure, and egg nog.

Yes, egg nog.  We have discovered that A absolutely loves egg nog.  How much?  Well, she guzzles it; and I mean that in the truest sense of the word.  She can down 4oz of the stuff faster than anything (sorry, the analogy portion of my brain has officially shut down for the night).

Her favorite thing though, is “Crumbly Cake.”  It’s actually called Railway Crumb Cake, but crumbly cake was easier for G to say when he was little, so the name stuck.  It is one of the easiest things to make (I’ve been making it since I was about 9 years old) and it is so delicious.  Another bonus is that it makes the house smell wonderful.  Both my kids love helping, both with the making and with the eating.  This has become my family’s traditional Christmas morning breakfast (we use it on Thanksgiving also) just because it is so easy.  It takes about 30-35minutes to bake so you do have to plan ahead it you want it freshly made in the morning, but it is worth it.  I haven’t seen this recipe anywhere since I read it in a Pockets magazine when I was 9 (yes, it was a while ago); so here it is if anyone fancies giving it a go.

2 cups flour (all-purpose)

1 cup sugar

3/4 cup butter

1 teaspoon baking soda

1 teaspoon ground cinnamon

1/4 teaspoon ground cloves

1/4 teaspoon nutmeg

1 egg

1 cup buttermilk

Combine the flour, sugar, and butter in a large bowl until mixture resembles crumbs.  Set aside 1 cup of this mixture for topping.  To the remainder of the crumbs, add the baking soda, cinnamon, cloves, and nutmeg.  Mix well.  Make a well in the center and add the egg and buttermilk.  Stir gently until just combined.  Pour in to a greased 9.5in pie plate and top the 1 cup of crumbs that was set aside at the start.  Bake at 350F for 30-35 minutes or until a knife inserted in the center comes out clean.  Let cool, then slice and serve.  Serves 8.

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This was ours about 15 minutes after it came out of the oven Christmas morning.  The kids wanted this before they opened their presents.  I’d say it’s because they like it so much (which they do), but I think the real reason is they wanted to be able to play uninterrupted after opening presents.

Suffice it to say, it’s always a big hit and A has actually been eating because of it.  I would make it year round, but for me it really is a Thanksgiving/Christmas time only food.  Guess I’ll just have to hunt down some regular crumb or coffee cake type recipes for the rest of the year!

In the meantime, happy eating and even happier Christmas!

 

 

 

Being Thankful Everyday

Yes, I know, not a very original title.  I’m sure we’ve all heard it a “bazillion times” (to quote my son) and are tired of it.  But coming up on Thanksgiving tomorrow, I realized that I no longer reserve my “what I’m thankful for this year” reflection to one day.  Every day I find at least one thing I’m thankful for, no matter how small.  Sitting here this evening, putzing around on Facebook, I realized just how big those daily small things really are.

This year, I am beyond thankful for A’s progress so far.  We have struggled to get her weight up and managed to succeed. Yay! No G-tube needed!  We have fought to get her muscle mass built up, and are making amazing progress. Plus, all those trips to the playground and chasing after her on her tricycle are great for Mama too!  I never knew you could run a mile without leaving your own block!  Amazing.

A is talking in small sentences (2 to 3 words) more often than not, she is engaged in the world around her (most days), and is just an absolutely amazing little girl.  Yes, that is my parental bias speaking, but I’m sticking by it!

G is an amazing big brother and little boy.  I won’t be able to call him that much longer as he turns 7 next month and is quite insistent that he is a “big kid, not a little boy!”  Despite all, he is caring, patient, and kind to his sister.  He helps her when she struggles and is endlessly patient (for an almost 7 year old) when she falls apart and lashes out at him.  Now, I’m not saying they don’t fight.  Believe me they argue and antagonize each other on a daily basis, but there is not a deliberate maliciousness to it.  It’s more of a I-want-to-see-how-far-I-can-push-this sort of thing and they resolve it fairly quickly and usually without needing me to step in (thank goodness!).

Tomorrow, while we’re all enjoying our Thanksgiving PB&J, yogurt, graham crackers, and Pediasure….wait, sorry, that’s A’s menu.  While we’re all enjoying our Thanksgiving turkey, stuffing, cranberry sauce, assorted veggies, rolls, and pies, let’s take a minute to remember those out there that may have a harder time finding a small moment each day to be thankful for with their children with special needs.  Maybe the one’s whose progress can’t be measured yet, or who have just received a diagnosis and have no idea what their future holds or it they will be able to make it through each day.  Let’s remember that while some of us may be lucky enough to have coverage for therapies, be it Medicaid, Medicare, or private insurance, not everyone has that luxury.  Some families are left with no resources and no idea where to turn or what to do.  Let’s take a moment to remember those families too.  After all, we can’t always see the heartache and struggles people go through until we take a moment to look a little closer and open our hearts a little wider.

I hope this Thanksgiving Thursday, whether you live in the US and celebrate it or not, you find at least one reason to be thankful for what you do have and not what you wish you had.

One Small Hop for a Munchkin…

One giant party for Momma!  Yes, my two and a half year old daughter who could not jump, did so today.  It was a small hop but both feet left the floor and she didn’t fall on her little butt so it counts as a victory in my book.

On the downside, we’re still struggling with food.  I made the sweet potato pizza for A but she didn’t like it very much.  Okay, she didn’t really like it at all.  Given the nature of the dough, it stays rather soft and A didn’t like that.  G, on the other hand, did.  He thought it was really good but said that in needed veggies on top to give it a better flavor.  Oh well, at least one of my kiddos liked it.

After a weeks worth of extra visits for feeding and occupational therapy evaluations and a visit to the nutritionist, I have learned that we are on the right track.  Despite A’s limited tolerance for a variety of foods, we have still managed to give her a somewhat balanced diet.  Is it ideal? No, not really since she neglects whole food groups, but through liberal use of homemade fruit and veggie smoothies she is still getting what she needs.  All we have to do now is up her caloric intake.  Thankfully, it is doable if A cooperates.

Oh, wait, I’m asking for a two year old’s cooperation.  Nevermind.  This may be a bit of a challenge.  That’s okay.  It will just force me to be more creative.  Good exercise for my brain!

Well, I have been attempting to procrastinate again with this blog, but I am so tired after a long day of therapy (A’s, not mine people!) and more paperwork (that I still have to finish) that my spelling is becoming atrocious (thank you spell check for saving me) and my grammer isn’t to far behind.  So before I embarrass myself and anyone who ever taught me (especially my mother) I will leave you with the recipe for the sweet potato pizza if anyone wants to give it a go.

1 large or two small sweet potatoes  (app. 1½-2 cups prepared) peeled, cut into chunks
• 1½-2 cups flour (preferably whole wheat)
• 2 tsp baking powder
• generous measure of basil, oregano and thyme (or other seasoning to taste)
• app 4 Tbsp cold water mixed with 2 Tbsp virgin olive oil

  • Boil the sweet potato in a large pan of water for about 15 minutes until very soft. Drain well, return to the pan and mash with a potato masher until smooth. Set aside to cool.
  • Preheat the oven to 400F. Place sweet potato in a large bowl. Add the flour, baking powder and seasoning.
  • Stir in the water and oil mixture with a large spoon until the dough comes together it should be soft and spongy. Knead lightly to form into a large ball – adding a little extra flour if the mixture seems too sticky.
  • Divide the dough into two equal balls and roll out on a lightly floured board into two circles around 2cm thick. Lift carefully onto two lightly oiled baking sheets. Brush lightly with oil. Spread one of the pizzas with your choice of sauce and toppings.
  • Place both pizzas in the oven, with the topped pizza above the plain base. Bake the topped pizza for around 25 minutes until well risen and lightly browned. Cook the plain base for 15 minutes until golden and cooked then remove and allow to cool.
  • Once cool, top with sauce and choice of toppings, cover loosely in foil and freeze on the tray. The next day remove from tray and wrap tightly in foil. To cook, remove foil, place on a lightly oiled baking tray and bake from frozen in a preheated oven at 400F for 15-18 minutes until hot.

Enjoy!

Going, Going, GONE!

Yep, it’s officially gone.  That slamming sound you just heard was my sanity, or what was left of it.  The past month has been a mixed bag of extreme highs and lows.  Just when we thought A seemed to be going up, something would knock her down…like food poisoning.

Wait, what’s that?  How does a child who barely eats anything wind up with food poisoning?  What could possibly be the cause?

Since you asked, it appears that it was mandarin oranges.  While eating out with a friend, A ate some mandarin oranges from the restaurant and a couple hours later was very sick.  But wait, how did we narrow it down to the oranges?  Easy, she refuses to touch them now.  Of the three, yes 3, things she ate that night, that’s the only one she hasn’t touched since.  Process of elimination?  Yes, please!

On a major downside though, we learned the beginning of this week that A has not gained weight in the past 4 months, in fact, she has lost some.  While for some of us that would be cause for celebration, for A it is not so great. (Have I mentioned I am a master of understatement?)

It may not seem like much but that combined with her growth rate dropping has her pediatrician and the rest of us a bit (there I go again – understating things) concerned.

Right now it would be so easy for people to point fingers and blame us as parents.  “Why didn’t you just make her eat?”  “Stop catering to your child and she’ll get better.”  “She’s just spoiled.”

Kind of makes you want to slap someone silly, doesn’t it?

Thankfully, no one has said anything like that to us, but we tend not to share too much with those outside our family and close friends (said the lady with the blog…).

Needless to say, in addition to the therapy that A already has, we are now adding back a few more.  We are revisiting our old friends feeding and occupational therapy and adding in a new friend, the dietician.  Sounds exciting right?  I know I have said this before but we are so blessed and lucky to live in a city that has an amazing children’s hospital that has a wonderful, no beyond wonderful outpatient therapy program.  The folks that work  there are some of the most wonderful (I need a to find a thesaurus and get a new adjective), kind, and helpful people you could ever hope to come in contact with when dealing with a child with special needs.  In all honesty, they make everything, from scheduling to paperwork, seem rather effortless and the therapists are just simply fantastic.

But enough of my rambling.  It’s a bad habit I have when I want to avoid, or at least try to avoid, things.  Ranks right up there with cleaning and other strange coping mechanisms I have developed over the years.

The worst part of all of this for me personally is that I thought I was finally coming to acceptance with A’s sensory integration issues.  I thought she was making progress and I was excited for her check-up because I expected to see some weight gain.  She has made amazing progress this past year and has fought for every little bit she has gained and we have all been there pulling for her.  Right now though, this almost feels like being pushed back to square one and I don’t like it.  It feels like someone knocked me down, took the wind out of my sails, hit me upside the head, insert the metaphor of your choice here.

I read once that coming to grips with having a child with special needs is like going through the grief cycle.  You start with denial and go through the anger, sadness, more anger, guilt, more sadness, maybe a bit more anger mixed with guilt mixed with sadness, and then you finally hit acceptance.  Right now I feel like I’m back at the anger/guilt/sadness stage.  I keep wondering if I could have done more, if I did enough.  Even when I know I’ve been doing all that I could and then some, it still hurts.

I look at my beautiful (yes, I’m prejudiced) little girl and I see a smart, sweet, happy little girl who is having to struggle to keep up because she can’t get enough calories in to support muscle growth.  Or who struggles with speech because the motor planning skill is rather elusive for her.  Or who wants so badly to follow her brother down the slide at the playground but she is terrified to go alone because she struggles to hold herself upright while sliding and the motion completely knocks her balance for a loop unless someone is holding her when she slides.  And that is if she can manage the steps to get to the slide.  But even with all that, she is still just so happy and so loving, especially towards her brother whether he likes it or not!

Deep down, in a small, dark corner somewhere I know that she will be okay and that as hard as it seems right now, she will get better.  All the same, I don’t think I’m ready to go back to acceptance just yet.  I’m still too angry that she has to struggle like this, I think the good Lord understands so it’s okay.

In the mean time, we’ll just crack open some more Pediasure, find something to toast (just ’cause the kids love to toast), and keep having as much fun as we can.  After all, if you can’t laugh in adversity, what’s the point?

 

Monkey wrenches and other hiccups

With the arrival of Memorial weekend comes an increase in reminders that hurricane season is “just around the corner!”  That also translates to time to start making sure you have emergency supplies on hand.  Normally,  I wouldn’t think twice about what we would need.  I mean, enough canned food and water per person to last 3 days.  Not a big deal right?

SCREECH!  THUNK!

That would be me realizing that I have a child that will not eat anything that comes out of a can, except certain fruits.  But only if they are cut in nice little bite sized bits.  Oh, and don’t have too slimy of a texture.  They should be sweet too.  But not too chewy or too crisp.

Yeah…this year is going to be more difficult than I thought.

Realizing the extreme limits of my daughter’s textural tolerances when it comes to food has led me to adjust most areas of planning for things.  Sadly, for someone who has lived in a hurricane prone state her whole life, the thought of how I would have to adjust emergency planning never entered my head.

I think on some level when we started this adventure I bizarrely hoped that we would wake up one morning and she would be “normal”, at least with food.  Even knowing that my child would spend the rest of her life with sensory issues, I still would, forget I think is the best word for it.  It’s not quite denial but it is those moments when acceptance is harder than normal.  When you want to cry and scream at the injustice of a child, your child, having to live with something that makes their life so much harder, until that moment when you realize that they don’t see themselves as different.  That they don’t see this as an injustice.  That, to her, she is just A.  Her mommy’s little monkey.  Her daddy’s little girl.  Her brother’s playmate and, occasionally, his annoying little sister.  That, more than anything else, is what gets you through the day sometimes.  All the advice and support in the world can only get you so far.  It’s those moments when you realize that, to them, they are “normal” that can get you through the tougher moments (even if they do seem to last for weeks on end).

So, I’ll take a deep breath, go back to making my hurricane emergency box list and hope I never have to actually put it to use.  But I’m still stocking up on peanut butter, crackers, and pediasure  just in case.

Pizza, Easter Eggs, and Physical Therapy

No, we did not serve pizza and eggs for Easter dinner.  Besides, A wouldn’t eat an egg no matter what color we made it.  Kind of makes me feel like I’m inGreen Eggs and Ham some days, except the ending would have to be rewritten.  Hhhmmmm…I think I feel a new project coming on.

Anyhow, pizza.  It’s good, cheesy sometimes, and not usually considered healthy.  I, however, am endeavoring to change that.  I like to make pizza with the kids.  G loves it, especially when I let him pick the cheeses to use.  The last few times we’ve had pizza, A has refused to try a bite so I quit offering it to her for a while to see if reverse psychology could help me out.  To my surprise, it worked almost too well last Saturday.  I cut one large slice in half and A not only took a bite, but she ate the whole slice (both halves)!  She even went on to eat a small scoop of ice cream afterward!  I was completely overjoyed and obnoxiously happy about the whole thing, much to A’s amusement.

Thankfully this was not an isolated incident.  She repeated her amazing pizza eating feat again this past Friday.  Of course, it was just plain homemade cheese pizza both times.  So, now I just have to see if I can alter the recipe enough that I can slip some healthy stuff in there without her knowing.  I have one recipe that uses sweet potatoes to make the dough and I think I’m going to start with that one while I hunt around to find some more.  I am looking for simple, but nutritious recipes that tolerate being topped with cheese and I welcome all ideas!

Another thing we learned this week is that A loves eggs.  Especially if they are filled with candy, chocolate candy.  Empty eggs or regular eggs, not so much.

I let the kids color some hard boiled eggs this year.  Still not sure what I was thinking…oh right!  I figured that maybe dyeing the eggs would get A to at least try a bite of one.  Yeah, I know, wishful thinking.

She did enjoy coloring them and I learned that she does actually know some colors even though she can’t really communicate which she wants beyond pointing and saying “dat un!”

A’s Easter dinner was fabulous!  She enjoyed a lovely dish of strawberry yogurt, and a biscuit, all washed down with a nice cup of juice.  Yep, yogurt and a biscuit.  Sounds fabulous doesn’t it?

Okay, sarcasm done, for now.  Sadly, no matter what we tried, the ham, sweet potatoes, and rest were not coming anywhere near her plate.  I wasn’t too surprised since she hasn’t been eating much of late, but it was still frustrating.

A goes through cycles where she’ll eat more solids, then she has zero interest in anything for a week or so.  Of course, her system is not used to large amounts of actual solid food (instead of yogurt and the like) so I think it plays havoc with her sense of hungry and full.  Right now, we’re in the zero interest in food.  If it weren’t for yogurt and instant breakfast I don’t think she would eat.  Not something I like to think about if I can help it.

It’s harder knowing that she’ll be going in for a weight check soon (about 3 months, but with how time has been flying by…). Her pediatrician wanted to keep her on whole milk even though A is 2 (when most kids switch to 1 or 2% fat milk).  I made the decision to switch her over to 2% because I noticed that she was drinking the milk throughout the day and not eating much.  I wanted her to rely more on actual solid food for her calories than on the milk.  This may seem a bit pushy, but I didn’t want her becoming dependent on the milk and her development suffer more.  Thankfully, we have a wonderful pediatrician who agreed to try switching her but, it she doesn’t show progress in the weight gain department it’s back to whole milk we go!

It does seem a bit strange to be worrying over a child being underweight, especially when that can be subjective sometimes.  In A’s case though she is actually underweight.  She looks and is healthy, but her development is suffering because she isn’t gaining weight like most toddlers.

Her lack of caloric intake means less energy available to run around and do all the climbing and playing like most of her peers.  This, coupled with the other sensory issues has resulted in A having low muscle tone throughout her body, but especially in her legs.  We have known about this for a while and A has done one round of physical therapy, made good progress and was discharged with a program of home exercises to do.  Unfortunately, this hasn’t been enough and she is now back in PT, this time twice a week.

It is very hard when you are handed an evaluation report on your child and what you knew is staring back in black and white, only it’s a bit more than you expected.  I knew A had low muscle tone, but the extent was more than I had realized.  I know it’s not my fault that I didn’t know, after all I’m not a physical therapist, but it doesn’t make it any easier.  Skimming that report in the office was like being punched in the stomach.  I sat there thinking what did I not do that I could have done? Why didn’t I think to try to do more?  Did I do some of the exercises with her wrong?  Did I forget something?

Oh wait, I did forget something!  I forgot that it’s not something I did or didn’t do.  It’s just A.  It’s part of her unique sensory issues and I have been doing what I can.  But there is only so much I can do before I need someone who is trained to deal with this to step in and take over.  After all, I have a disabled husband, our son, A, plus a small house to take care of.  I can’t afford to buy the equipment I would need nor do I have the space for it.

Okay, deep breath.  Check. Pull self together. Check.  Hug daughter.  Double check.

Did I still want to cry?  Yes.  Did I still feel like I had let her down somehow? A little.  Would it get better?  Definitely.  After all, the sun still rose this morning and last time I checked it planned on rising tomorrow.