SUCCESS! And setbacks.

Yep, we’ve had a success.  Well, actually it’s more like two but rolling them into one makes things easier.  What success am I rambling on about you ask?  A licked a chicken nugget and took two bites of a carrot stick.  But, not only did she take those two bites, she chewed and swallowed them!  Yes, that’s a big deal around here so stop rolling your eyes.

A loves carrots, but she has the hardest time swallowing them.  When chewing, she hits a point where it’s almost like she can’t feel the food in her mouth well enough to tell where it is so she can swallow.  She has been struggling with this for what feels like forever.  Anytime we have carrots, which is quite frequently, she tries one but usually after one bite, I have to clear out her mouth with my finger because she is gagging.  I cannot begin to tell you how ecstatic I am that she managed to swallow two bites.   Granted, she didn’t eat any more after that, but I really didn’t care.  She had two bites! She had two bites!

Happily she followed that success up with licking a chicken nugget dipped in honey.  Normally, it wouldn’t seem like a good thing, a kid licking their food, but it is such a major, major step forward for A that I’m still, three weeks later, over the moon about it.

When I started this blog, I had intended to post something every week.  Unfortunately, I did not reckon on the force that is A.  All the good intentions in the universe mean nothing to a child, special needs or not.  When they decide not to sleep or not to eat or throw hour plus long fits, there isn’t much you can do except hang on.

Regrettably, we recently and inadvertently created a situation that caused A to have a major backslide.   She had been doing so well using the potty, sleeping, eating, everything and within a week it was as if someone took a wet rag to the slate and totally obliterated everything.  Since we rectified things and “undid” the situation, A has slowly been returning to “normal.”  I just wish that was a quieter process.  Our whole household, small as it is, has been enduring endless tantrums and fits.

Okay, maybe not endless, but it sure feels like that way.

It’s hard to be positive and think happy thoughts when you feel like you are stuck in a dark room stumbling around to find the way out and the parameters keep changing.  But, in the words of Professor Dumbledore, “Happiness can be found even in the darkest of times if one only remembers to turn on the light.”

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?


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.

Of Elephants and Playrooms.

I recently read a rather interesting book about special needs children.  It’s called The Elephant in the Playroom: Ordinary Parents Write Intimately and Honestly About the Extraordinary Highs and Heartbreaking Lows of Raising Kids with Special Needs by Denise Brodey.  It is very different from other books in that it is written, as the title suggests, by everyday parents who deal with the daily challenges of raising special needs children.  These are people who have written honestly about how their child’s diagnosis changed their lives, for better or for worse, and how they had to deal with it.

It’s not easy raising children; any parent can tell you that.  Each child presents their own unique challenges and joys. But, what do you do when your child is outside the recognized norm?  How do you cope both before and after you have answers?  Even when logically you know that there are other people on the planet facing the same or similar challenges it can still feel like you are the only one in the world dealing with this.

The collection of essays in this book are organized into sections by topic (i.e. – To Medicate or Not to Medicate, Thinking Different, Taking Care of You, Going Public) so you can pick and choose which to read or just start at the beginning and read cover to cover.  I chose to read all the essays and came out the other side feeling like I had been sitting in a room full of people who knew how I was feeling and sympathized with what I was going through.

This book is a good read for anyone raising a child with special needs and even those who aren’t.  I think it gives a good insight into how we, as parents, feel when we see our child fall apart, or have to explain to a friend/family member for the bazillionth time why little Joey or Jessica is acting a certain way, or even when strangers stare and make comments, welcome or not.  The best part is that it helps to reassure that we are not alone and for every challenge we may face with our children there will be a triumph somewhere to balance the scales.

The Potty Diaries

Yep, potty training.  That part of parenthood that is unavoidable, sometimes messy, and can even make adults want to run and hide, but that’s only if you’re one of the lucky ones.  Yes, lucky ones.  Parents not dealing with a child who seemed to have no concept of the difference between wet and dry and would spend all day in a messy diaper if I didn’t catch her and wrestle a clean diaper on her.

Our pediatrician made sure that I was thinking about starting potty training during A’s last check up.  Not in a pushy-you-should-really-start-this-now way, but more of a this-might-take-her-longer-to-grasp-than-most-kids-so-start-the-introduction-now kind of way.  While I completely understand and mostly agree with that assessment, I balked.  Why?  Did I not want to push my daughter into something before she was ready?  Did I think it would be too much of an upset to her routine to try to add potty breaks?  Yes and yes.

Let’s face it, when you have a child who is already majorly resistant to routine changes and attempt to add something major in while getting another child ready for school it’s nothing short of a recipe for disaster.  Okay, maybe not disaster, but a massive headache at least.  I figured the smartest and probably easiest thing to do was to wait until school was out and I could devote my full attention to potty training.  That was my fabulous plan.

Wait, hear that?  That would be the sound of my fabulous plan flying out the window.  Yep, A went and decided to start potty training on her own.  I blame the Huggies pull on diapers.  I bought some to try since changing A’s diaper is a bit of a challenge, especially when we are out and about.  Apparently, after wearing them a few times A decided she liked the “big kid” feel much better.  Next thing I knew, she wanted to use the potty.  Granted, it has still been a slow process.  As eager as she is to use the toilet, we still are taking it slowly.

Initially, A wanted to use the toilet as much as possible, but she was having trouble with the transition between play, potty break, and back to play so I made her slow down.  After spending a couple weeks slowly adding one more bathroom break every few days, she has finally settled into a routine and can handle the transitions.  I figure she must be really determined to do this because usually it takes her longer to acclimate to a schedule change.  Of course, the promise of Minnie Mouse underwear might have something to do with that…

So far, she has been doing really well with potty training.  We’ve had a bit of a set back this week since she has been sick, but since she is still staying dry through naps and for most of the day and using the potty when she’s feeling up to it, I’m not complaining.

This is a major triumph for A.  From everything I had heard and read, kids with SPD can be very difficult to toilet train.  So far, A has been the opposite.  Granted we still have a long road ahead, especially given her extreme dislike of public toilets (too noisy), but I think that with some patience and a good set of earplugs, we’ll make it.

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.

Indy Cars and Spring Break Lessons…

Sounds like an interesting time, doesn’t it?  Sadly, a lack of internet and Spring Break, but mostly the lack of internet,  got in the way of my posting.  But, I’m Back!  Thank you!  Thank you!  I’ll be here all week and then some!

Okay, now that we have that out of the way…

The past couple of weeks have been a learning experience for all of us.  With my son’s Spring Break falling the week before Easter I decided that it would be a good time to find out just how much stimulation A could stand before she went into meltdown mode.  Sound like fun?  Well, sarcasm aside, it actually was a lot of fun.

We started the “stimulation overload test” (not very original, I know – I’ll work on it for round 2) with a day at the IZOD Indy Grand Prix.  It’s something we take G (our son) to every year (thank you Dad for the tickets!) and I decided to take A this year.  Amazingly, it went very well.  A loved seeing the Indy cars, waved to a few drivers, and got to spend time with some family and friends.  Granted, she barely ate while we were there, but I figure that eating four (yes, 4) yogurts and drinking a Pediasure over the course of the 6 hours we were there is a marked improvement over past excursions.  The best part of all?  Both kids were so tired by the time we got home that bed time was a breeze!

We followed this adventure up with visits with grandparents (both sets), a trip to Busch Gardens, and swimming at a friend’s house.  Things were going pretty well at this point.  She hadn’t had a melt down, was eating her usual foods pretty well and even ventured to try out a french fry.  She didn’t make it past the first bite, but she tried it so I was happy (G wasn’t, but since she had stolen one of his fries can you blame him?).  Then we hit the Spring Break halfway point, and boy, did she ever hit it.  To say she had a melt down would be grossly understating things (and gross pretty much described her place after most meals…after she upended the dish of food she refused to eat).

After about 3 days of doing….wait, what did we do?  Oh right, NOTHING!  I really could not expose the public to my child at this point.  It would have been considered cruel and unusual punishment, for the rest of the world, had I taken her out somewhere.  The poor baby could barely tolerate her brother saying good morning to her without covering her ears and crying.  At least G understands what’s going on and doesn’t take it too personally when A does that, otherwise she would give him a complex with the number of times she has cried when he looks at her or talks to her.  Although, the one thing she did seem to tolerate well was music.  Specifically, Celtic Thunder.  Anything else seemed to set her off, but Celtic Thunder has a calming effect on her, except for the times when she was dancing to their music.  It worked like mini therapy for her little neurons.

For those who haven’t heard of Celtic Thunder, they are a group of 5 guys from Ireland (and Scotland) who perform a mix of traditional Irish/Celtic music and some more contemporary pieces as well.  They are fun to listen to and watch (if you want more go to  No, I’m not affiliated with them in any way, my kids and I just happen to like their music, and the affect it has on my sanity.  Moving on…

Suffice it to say, we made it through the rest of the week (barely) and by the end of the weekend A was back to her old self.  I don’t know if the rest of us have recovered yet or not…Stay tuned for further adventures!

A Window into a Strange World…

Most of my posts have been about my daughter and how her Sensory Processing Disorder affects her life, how we all cope, and how a seemingly benign day trip can turn into an adventure.  Through all this though, we still don’t have a good understanding of  how she feels and why certain things set her off.  While I may not need to understand to find coping mechanism, it would be helpful.  After all, it’s easier to navigate an unknown room with a flashlight, you’re less likely to walk into a wall.    Recently, thanks to A’s early intervention specialist, we have been given that flashlight in the form of a YouTube video.

This video is about an autistic girl, but it gives a window into the world that my daughter lives in.  A may not be autistic, but the sensory issues are the same.  Granted, A is not as severe as this girl, and I am in no way seeking to compare my situation to what this family lives through.  However, the small glimpse into the world that these children live in has helped me to better understand A’s difficulties with the world around her and teach her to cope in a positive and effective manner.

While most people will never have to suffer the heartache of watching your child struggle to eat or communicate or do things that “normal” children do, I think this is something that they should still see.  It might help all of us better understand why these children do what they do.

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