Monday, October 12, 2015

The Most Uneventful Shopping Trip

Last week, I told you about our Adventures in Grocery Shopping. A few things changed this week and, truth be told, this week's trip was UNEVENTFUL!

So what was different from this week and last week you ask?

1. Little Man was with us. He is off of school today for a "staff development day." I talked to him beforehand about how we weren't going to get the "little carts." It's too difficult for me to corral both kids with them. Plus, I wasn't entirely sure how much we were going to get.

2. We've started the Wilbarger Deep Pressure and Proprioceptive Technique (DPPT). (More information can be found here.) There is a "sweet spot" of time that the mind and body organizes itself. This "sweet spot" is about two hours. (That's why it's recommended to do it every two hours if possible.) We went to the store an hour after brushing.

So maybe this brushing thing is working....

All I know is that I didn't have to buy Cheetos, milk, waffles, sugar, or anything else that we usually get at the store because some little girl was going to melt down if we didn't. AND afterwards, we all shared a package of powdered donuts and Princess didn't scream or cry that her hands were messy!

Friday, October 9, 2015

GUEST POST: Sensory What? -- by MeMe

Here is another guest post by Princess's grandmother, MeMe. In this one, she explains the different sensory issues that Princess has and what it all means. Yes, all children (and adults too) have sensory issues. It's when it affects their daily life that they need help.

You know that Princess has Cerebral Palsy (CP); we’ve discussed that in my last guest post.  What you probably didn’t know that almost 89% of the people who have Left Hemiplegia (the ‘type’ of CP that Princess has) also have sensory issues.  Sensory issues are known by two names that essentially mean the same thing – Sensory Processing Disorder (SPD) or Sensory Integration Disorder.  What is SPD?

First, let’s take a brief look at CP again.  CP, as you will remember, is a caused by some sort of known or unknown brain injury. Along with that brain injury and resulting nerve damage that it causes, it also causes nerve damage to the way the nerves process the sensory input it receives.  Remember from grade school the 5 senses; touch, hearing, vision, taste and smell?  Well they are obviously processed in the brain by several of the billions of nerve cells all throughout the brain.  When one part of the brain is injured, there is a good likelihood that the way we perceive the input from one or more of our senses is impaired as well. 

The most common known brain injury is Stroke.  Many stroke victims not only lose movement in a part of their body, they also lose sensation from that part of their body or taste, or the ability to smell, or even hearing or talking.  It’s the same way with many of the CP patients.  Except CP is a much milder injury to the brain, for the most part.  Severe CP patients are sometimes are unable to see, even though their eyes are fine, or they can’t hear, even though the auditory system is all there and working correctly.  The reason for this is, because the injury to the brain also injured nerve cells, thus the smell of garlic or a sweet smell of a rose, never connects in the brain.  The nose is doing its job, but somewhere along the nerve fibers in the brain, it isn’t making a connection and therefore the patient doesn’t register the smell at all.

With SPD, the nerves or nerve cells are damaged by the injury.  They are there, they may not be firing correctly or maybe they just aren’t making the complete connection to tell the person what they need to know about the input their senses just received, or perhaps they are over-firing.  For most of us, if we are walking down a busy street and hear a car horn beep, we will startle and look around to make sure we aren’t in harm’s way, and assuming we aren’t, we continue on our way.  When someone with SPD, who has auditory issues, hears that same horn beep, they may freeze, become very fearful, retreat, even into traffic to get away from the noise, become disoriented, pass-out, cry, or a number of other unusual responses.  Their brain is having trouble processing the sound – it’s not making the proper connections and the rest of the brain doesn’t know exactly how to respond. Or, the input is so overwhelming to their nerve cells, that it is causing them to over-fire. With small children, it is typical for them to have, what we call a ‘meltdown’ in either case. 

A meltdown is NOT a temper tantrum.  A temper tantrum happens when the child wants something – a toy, attention, etc.  When that is given or the child is distracted, the tantrum stops.  With a meltdown, the child cannot control their actions until either their brain catches up and tells them how to respond, or they are removed from the offending sensory input.

One of the biggest issues to explain is that many of those that have SPD depend upon things being exactly as they have always been.  Change upsets them, because they have difficulty processing it. For instance the other day, Princess had a meltdown in the grocery store because the bottle of chocolate sauce wasn’t squeezable as she had always known it to be.  She has never handled a brand new, unopened bottle; she had no experience that with a sealed bottle, you can’t squeeze it and it doesn’t ‘feel’ the same as what she knew.  She couldn’t process this and she shut down and then melted down, as her brain tried to catch up to what she has always known.  Princess is 2 years old and although she has a vocabulary of a 5 year old, many of the concepts and even words she doesn’t yet comprehend. As a result, her mother had to show her that ALL the new bottles were like the one she had, AND explain it to her in a way she could understand with her 2 year old comprehension level.  Unfortunately we go through that with many, many things, as there is always something that she has not had exposure to, or that she doesn’t remember having exposure to and her brain therefore cannot process the change into what she expects and knows.

Right now, as I type this, Princess is having dessert and wants a ‘pink’ Popsicle.  She’s already had a cookie, but her brother chose a Popsicle.  We nearly had a tantrum because she ‘wanted’ and wasn’t going to get.  This can turn into a meltdown, even though it starts as a tantrum, as she becomes overwhelmed with the noise of her own crying. Fortunately, the tantrum and possible meltdown was avoided when I explained to her we didn’t have ‘pink’ Popsicles and her mom distracted with playing with some toys.  As you can tell, it gets VERY ‘interesting’ around here.  Meltdowns can last for hours – which means hours of screaming, crying, stimming, rocking and a number of other things, as her brain tries to make sense of the input it is receiving.  It is heart-wrenching and one of the worst things, as a parent and a grandparent, that I have had to witness, knowing that there is nothing I can do to help her make sense of the world, or noise, or change or whatever.

These are some of the areas that we know Princess has an issue with, they may change with time and we may discover more as she grows and does more:

·        Loud noises
·        Groups of people or children
·        Unexpected change
·        Having dirty or sticky hands, fingers or areas on her body
·        Sleeping
·        Severe separation anxiety – she doesn’t feel ‘safe’ except with a few people, due to her other issues.
·        Uncomfortable in anything but certain fabrics and clothing – basically will cause a meltdown.
·        Food if it is ‘broken’ – meaning a cracker that breaks into 2 or more pieces - -she won’t eat it, because it’s broken.
·        Talks with a Boston accent, even though no one in the house does.

So what CAN we do??  Occupational Therapy is the therapy that deals with sensory issues, as it can and does affect the activities of daily living.  You can’t do your daily walk, if every time a car horn beeps you freeze and then run into traffic, trying to get away from this offending input.  So the doctor has ordered Occupational Therapy. So, what do THEY do to help??  Actually there are several activities and therapies that help.  For instance, Princess has an issue with loud noises, it is recommended that we get her headphones and play soothing music to drown out the offending noise, especially when we know it’s going to happen – such as when we vacuum the house, or blow the leaves off the driveway.  We haven’t tried this yet, but will.  It may allow her to process the vacuum or other noise at a level that is comfortable for her brain to process, while also rewarding the brain with noise that she likes.  Makes sense and something we will be trying. 

Another thing that seems to help is large motor activities – running, jumping, crawling, spinning, etc.  They aren’t exactly sure why this helps with SPD, but there is documented studies that show it does.  This is one of the reasons why Princess goes to the gym, where the class that she is in, her Occupational Therapist (OT) is there to observe and help the families they service.  Princess is not only running and jumping and physically active, they utilize lots of different equipment to offer exposure in a safe environment.  This leads us to the next therapy – exposure. Remember with Princess, she was under ‘house arrest’ for the first 14 months of her life, which was spent either in the hospital or in the house, due to RSV season.  She didn’t get exposed to being in a crowd, lots of the noises of the world.  This may have had an impact, but we also knew that RSV could have been deadly to her, if she had caught it. So, the plan is to expose Princess to as many things as we can, while keeping her from being overwhelmed and allowing her to feel safe.  Sounds easy, right??  Remember the grocery store and chocolate sauce??  If it’s not the norm, or what she’s used to, she reacts poorly, as she cannot process the change.  We will figure it out!! But obviously, a trip to Disneyland is NOT in our immediate future!

Remember many people with traumatic brain injuries (TBI), like stroke, have to be taught to walk again, or write again.  The brain is an amazing organ and has billions of neural pathways.  If we can find the correct therapies, perhaps we can help the brain to ‘re-wire’ itself or at a minimum, perhaps we can help Princess learn to compensate for her SPD.

Below are some of the therapies that we are either currently doing or will be doing, as money and/or training become available.  We have already researched these, discussed them with Princess’ therapists and/or they are being recommended:

·        The Wilbarger Deep Pressure and Proprioceptive Technique (DPPT) & Oral Tactile Technique (OTT), more information can be found HERE We will be starting this after training on Friday.
·        Gym Time, as many Friday’s as she can make with doctor appointments, and such.
·        Jumping Time at home – we have purchased a small trampoline.
·        Exercise Ball Time – again we have purchased this and are doing prescribed exercises on it.
·        Essential Oils – we are in process of learning and purchasing, but have already found a couple that seem to help – if you are interested in Essential Oils, let us know, we can hook you up and earn Princess free oils and a diffuser!
·        Therapeutic Horseback Riding – this will take some budgeting, unless CCS or our Regional Center decides to step up to the plate and pay for it.
·        Headphones and a child quality Mp3 player, this will again take some saving and budgeting.
·        Swinging – we purchased a toddler swing for the swing-set when Princess was a baby and liked to swing (now we know why!)
·        Sit and Spin – we’ve noticed that Princess likes to spin herself as a way of ‘stimming’ which is creating rhythmic motion that is soothing to her (many autistic children ‘stim’ by flapping their hands).  We will be budgeting and saving to get her this ‘toy’.
·        Weighted Blanket and later, perhaps a vest – again, something that we have to budget and save for.
·        Natural sound machine – another item to be purchased.
·        Child quality CD player that she can use to listen to music that soothes her. Another item to be purchased.
·        Soothing music that she picks out, again something to be purchased.
·        Clothes that she will wear – which right now is ‘skinny jeans’ (they are like leggings for women) and short sleeved tops.  No dresses, unless it is denim, nothing on her neck – which annoys her and nothing ‘scratchy’ which annoys her. Items are purchased as we find them, but of course they have to be specific to her ‘liking’.
·        Lots of going places for exposure – new parks, picnics, playgrounds, different stores, schools, and ideas are appreciated!!
·        Of course we will be keeping Princess in her pre-school, which again we have had to budget for, as the insurance, school district, etc. will not pay for this particular pre-school, which we think, right now, is the best fit for her. (Next year, she may be attending the special needs preschool, depending upon how she assess for the school district after the first of the year. This will obviously be looked into like any other new day care/pre-school setting, as it has to meet her needs.)

As you can see, many of these things either need to be purchased or are ongoing expenses, which we need to figure out how they fit in the budget.  We will continue to try to do everything we can to help Princess and we will make it work!  If you’d like more information about CP or SPD, I’d encourage you to visit the links below:

Tuesday, October 6, 2015

Preschool and the Dentist

Today at preschool, Princess did okay. She didn't want me to leave though. Every time I tried just to sneak out of the room, she would run down the hallway after me! Most of the kiddos didn't really want snack today. Princess actually took a few bites of rice cake! I can't seem to introduce new foods at home because of Little Man and his picky eating habits. Every time I try, he says something and Princess echos it.

Then with painting today, the kiddos got to paint with various (plastic) fruits and veggies. Princess wasn't having it because someone had already painted with them and then she would get paint on her hands. I don't quite understand this. She doesn't have a problem with all the handprints we've done. She lets just about anyone, well, mostly me, paint her hands and then she'll put them on the paper. But today, she didn't want to touch the food that had paint on it. So pretty much I painted her circle.

We also had Mr. Potato Head out, so of course "Tinky Nee" had to wear the glasses.

They also made plates with their favorite breakfast on it. Sadly, there wasn't any waffles for Princess, so she had to use pancakes. And then of course she had to play with the magnifying glasses! While she was playing, I poked my head into the store room and found that they needed more letters cut, so I snagged those to do at home. Finally, we were in the playroom. I tried to duck out again, but Princess wouldn't let me. Oh well. Maybe next week.

This afternoon, Little Man had his first field trip with his class. Their service project this year is that they are going to be cleaning up trash in the parks around town. So they walked down to one of the parks today, picking up trash along the way. I then met him there at the park so we could go to the dentist! Surprisingly, BOTH kiddos did GREAT! Little Man showed off his recently lost tooth. Yes, he did lose his first tooth! The Tooth Fairy visited last week and left him two golden dollars! Then he got his teeth cleaned and a fluoride treatment. Then it was Princess's turn. She actually let the girl brush her teeth (with a pink tooth brush!) and even let her put fluoride on them! But probably because the tray was pink.

So that was our day. Came home from the dentist, did homework, and then the kiddos went off with their dad for dinner. Soon it will be time to get into jammies, have desert, and go to bed. Here's hoping that goes easily tonight.

Monday, October 5, 2015

Adventures in Grocery Shopping

Lately, Princess has been having a difficult time when we go to the grocery store. It's not anything I think I can totally change. She is VERY resistant to change at times. This goes from the sheets on her bed, to the coloring books she has, to obviously going to the grocery store.

How can going to the grocery store be difficult you ask?

Yes, we've tried the little carts before. They only last so long and I still have to help steer.
Well, now that Little Man is in school, we go on Mondays. (It's also our only free morning at the moment!) Well, because there are some things we get almost every time we go to the store, Princess pretty much will tell me what we need to get. If I don't get what she thinks we need, she will have a meltdown for about six aisles. Sure, if it was because she wanted something like candy or cookies, I'd be okay with it. But this over things like milk!

So sometimes, in order to avoid a meltdown (and the pity looks from the grandmas and other moms), I will get the things that she asks. This usually pertains to things that aren't going to go bad right away. Then we just have a "special" on it at home. This is the list of things she has thrown a fit over and I've had to buy:

  • milk (it HAS to be a gallon and have the pink lid now)
  • Cheetos (she can't have potato chips)
  • bologna (she calls it "big taco baloney")
  • sugar
  • waffles
Then today, we had a fit over chocolate sauce. So you know, her fits include screaming and crying at me and pushing or pulling me or the cart in whatever what she thinks it should go. So what was the deal with the chocolate sauce? Well, we were out last night, so I didn't have to make her "chocolate milk" at bedtime. So today, we needed to get some. Well, she got to pick which brand we got: Hershey's or the store brand. She picked Hershey's. Then she wanted to sit in the cart so she could hold it. About an aisle away, she realized it was closed. She wanted it open. And she wanted the "squeezy" kind. No matter how much I tried to tell her that that was the "squeezy" kind, she didn't believe me. She wanted out of the cart and then actually PULLED the cart out of the aisle we were starting down so we could to back to where we had found the chocolate sauce. We finally got back there and I showed them to her. She picked the Hershey's again and I told her that I wasn't opening it until we got home because then it would spill all over her and we needed to go get "pink sugar." Thankfully, she came with me and by the time we got BACK to the sugar aisle, the fit was over.

This week, we didn't have to buy anything extra, thankfully. And the chocolate sauce was the only fit. Now if only they would've let me get out of there without eggs. (They were out of the type I can buy with WIC, so I was hoping, but instead, I had to get JUMBO eggs. Oh well.)

Sunday, October 4, 2015

The First Thing You Learn in the NICU

The first thing you learn in the NICU is:

Don't Compare

Don't compare your child to another child born the same day as yours.

Don't compare your child to another born the same gestation as yours.

Every child follows their own path. Some have longer stays. Some have shorter stays. Some have lots of issues they must overcome. Some don't.

If only I could keep remembering this!

Lately, I have been seeing all the things Princess CAN'T do.

She can't undress herself.

She can't put her shoes on.

She can't jump.

Yet there are other children I see who CAN do these things. Maybe they are younger than Princess. Maybe they were born earlier. But yet, they CAN do things that Princess can't. And sometimes that is frustrating. It hurts me to see it. I want her to be independent like she wants to be, but she's not. It's going to take time for her to figure it out. Maybe she'll have to do things in a different way.

I guess I just have to remember that rule from the NICU: Don't Compare. She's going to follow her own path and get there whenever she does. I've just got to help her along the way. I need to focus on the little milestones again.

She CAN walk up stairs holding a railing or without. (Scares the daylights out of me!)

She CAN take a few sips out of an open cup, if the cup is small enough and doesn't have a lot in it.

She CAN color with various things, even though her grip is still "caveman-ish."

She's doing so much now. I just have to remember to always look for what she CAN do instead of what she can't.

Saturday, October 3, 2015

Thank you for not saying "I'm Sorry"

Last week, we got Princess's diagnosis of Cerebral Palsy.

When I told you about it, you surprised me.

Other people who I have told paused. Then they said, "I'm sorry." They don't know what to say, so they say, "I'm sorry."

Well, I'm NOT sorry about my daughter's diagnosis! I'm glad! It means that she WILL qualify for services. See, my two year old is smart! This isn't surprising. Her brother is smart too. As a result, she likely will not assess low enough to qualify for services she so desperately needs. She will likely not have enough of a deficit in enough areas to warrant someone saying she needs services. But with this diagnosis, it is just about automatic now. She has CP. There's no changing that.

So when I told that we got our diagnosis, you paused. Then you said "I'm glad you got your diagnosis." You understood how important this piece of paper was to continue to get my daughter help. You understood because you've been there.

Thank you.

Thank you for understanding.

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