Saturday, May 21, 2011

To blog or not to blog...

I thought I had given up this blog for good.  I don't have the time to be on the computer for any length of time in order to properly edit photos and write on any regular basis.  I am a perfectionist and am unhappy just throwing something together.  I'm not going to be a professional blogger.  It's decided!

Just in trying to write this short entry, I've been interrupted to get Jillian an orange, explain why we didn't have the oranges Jillian prefers, endure a temper tantrum, break up two sibling arguments, change a diaper, and answer various questions from my dear husband.  

I will never be a professional blogger!   

Although I do realize this blog is a great tool.  I have been told by so many friends and family that they miss my blog and hearing about Jillian's daily struggles and successes.  And there is always something to write about where she is concerned.  It will be good for me to journal and for others to hear how she's doing.  Is she using her spittoon?  Has she eaten meat yet?  Where will she be going to school? 

I have so much more to say, but it's time for soccer.   Why am I writing again when I can hardly finish one entry?  No promises!

Sunday, March 13, 2011

Little Cousins

Jillian is surrounded by big kids.  Her sister is a big seven year old who gets to attend school every day.  Ella gets to have sleepovers with friends, can rollerblade, and is able to get her own snacks from the pantry and fridge.  The kids in our neighborhood are big kids too.  They run fast in games of tag and ride their bikes effortlessly up and down our street.  Jillian is physically shorter than all of them including a three year old friend next door.  I think it must be tough for her to be the little kid in the hood.

This weekend Jillian had the opportunity to be the "big girl".  We spent the weekend with the girls' cousin, Ailie. 


Ailie is one year old.  She's a sweet little girl and my kids adore her.  Ella spent time reading to Ailie.  Jillian spent the weekend telling Ailie what to do.



"Stop, Ailie."

"No, no, Ailie!  You can't go in there."

"Put your shoes on, Ailie."

"Don't put that in your mouth, Ailie."



Jillian LOVED spending every minute following her cousin around the house making sure she didn't get into trouble.  Afterall, at a little over four years of age, Jillian was the big girl.  She had so much fun helping to feed her cousin and even helped to change a diaper.  I did have to rescue Ailie a few times when Jillian got a little overzealous in her discipline, but they really got along very well.  And I think Ailie enjoyed having Jillian be her shadow.  I may have that wrong, but she didn't complain too much.



I think it's important for any younger sibling to get a chance to play a different role occasionally.  And no, it's not time for me to have another child.  That ship has sailed!  Jillian will just need to get her fix from frequent visits with Ailie.

Friday, March 11, 2011

Shhh...listen!

My children aren't perfect listeners, but sometimes I think they are better at this task than some adults I know!  I played bunco last night with an amazing group of ladies.  We've been playing bunco together for years and I always look forward to the glass of wine and great conversation that goes with the night out.  But one thing always amazes me.  Some adults can not listen!  They are expert talkers, but listening is not a talent they possess.

Here is a hint....if you leave an event without any information about the people you were with, you did not listen.  On the other hand, if you found out about one friend's car trouble, another friend's vacation plans, or laughed hysterically hearing stories of children and/or husbands...congrats!  You have mastered the art of listening.

So this is the goal.  See how much information you can get from others.  You may need to ask a question or two.  Just the basics...  

How are you?

What have you been up to?

Nothing complicated required, but what follows is really important.  You will need to shut your mouth and listen to the answers.  Listen without thinking about something else or what you want to say next.  Listen with the idea of paraphrasing what the other person has said.  So this is my lesson to my children today.  Ask a question, and listen.  Why?  It makes other people feel good.

Wednesday, March 9, 2011

It's okay to spit at the table.

This post may fall under the category of TMI...too much information!  It might make you a little queasy.  It made me queasy just to join my family for dinner tonight. 

There is an activity in my favorite eating aversion book, Just Take A Bite. The activity is about making a "spit bucket".  What in the world is a "spit bucket"?  But really this is ingenious as are many of the activities in the book.  The idea is that children with severe eating aversions due to autism, developmental disabilities, food allergies, or medical issues related to the mechanics of eating, need to take small steps towards accepting new foods.  The steps to eating a new food go something like the following, but please note that even though some of these behaviors sounds comical, this is very serious.  Children with severe food aversions don't even like to sit at the table with new foods.

  1. Screams and refuses to sit at the table when the new food is on his/her dinner plate.
  2. Calmly sits close to the new food. 
  3. Smells the new food.
  4. Touches the new food with a fork or spoon.
  5. Touches or "plays" with the new food with fingers.
  6. Kisses the new food. (our therapist worked hard on this step)
  7. Licks or tastes the new food.
  8. Puts the new food in his/her mouth and then spits it out.
  9. Swallows the new food.
So in relation to step number 8, there needs to be a way for Jillian to spit her food out without making the rest of us sick.  Thus...the spit bucket.  We took the girls to our favorite place to paint pottery and let Jillian pick out her very own spit bucket to decorate any way she desired.  I really wanted something with a lid and luckily, Jillian loved this ice cream cone with a removable ice cream lid.  Perfect for hiding the partially chewed food.

Painting was fun!






Ella painted a mug and wanted to make clear it was just for hot chocolate and she wasn't going to spit anything it her creation.  Good plan!



Tonight we picked up the finished pieces.





It's really unbelievable, but tonight I ate dinner sitting across from Jillian and her ice cream cone spit container.  She was excited!  Her eyes lit up at the mention of trying the rice that was on her plate with the option of immediately spitting it out.  She didn't use it tonight and did not try the rice, but she understands the concept and is excited about it.  For now, that is good enough for me! 

Tuesday, March 8, 2011

Mommy Successes

It's the little things in life!  As I placed a healthy breakfast in front of my kiddos this morning, I felt like I was the best parent in the world.  For some reason, the act of not only putting healthy food on the table, but having them eat every bite, makes me feel like a total success.  Like I said, it's the little things that make my day.

Here is a list of more little things. I feel like a total Mom-success when....

my kids are clean.

I remember to give my girls their vitamins.

game time doesn't end in a sibling smackdown.

Jillian says her tummy is full.

Ella exhibits kindness and empathy for other children.

Jillian hasn't hit Ella with some sort of makeshift sword for a whole day.

the kitchen floor is just washed and no one has spilled anything yet.

the sun comes out and I gather all the children on our street for an improptu trip to the park.

I watch Ella engrossed in a new chapter book.

my husband is out front with all the neighbor children leading them in a game of Red Light Green Light or trying to teach them to play hockey.

Ella finishes her chores.

I can find matching socks for both girls.

I send both kids off to school with hair combed and teeth brushed.

we take a trip to the library and when I ask if the girls want a movie they say, "No. Just books."

we have hot chocolate on a snow day.

we are ontime to any activity.

Jillian tells me she wants to do it herself.

I remember to give my girls hand sanitizer after being at the indoor park or other germy locale.

I am able to pass off something healthy, like a berry smoothie, as dessert.

I sneak into my girls' rooms late at night to place their little limbs back under the covers and they sleep so soundly they have no idea I was ever there.

Monday, March 7, 2011

Girl Scout

I have to admit when Ella said she wanted to join Girl Scouts, I was a little hesitant. I encourage extracurricular activities like swimming, soccer and volunteering at the local humane society, but Girl Scouts?  Really?  That means I have to help sell cookies and I didn't want any part of the cookie business.  A friend had her daughter join and the pressure mounted until I gave in.  So here is my little Daisy.

   

My little entrepreneur loved selling cookies!  She was so meticulous keeping records of the cookies she sold.  She wasn't playing store like she has for years in her playroom.  Making "real" change for "real" customers was a thrill.  And I can't tell you how many times she rearranged her display until it was just right.

So this is how far I've come!  I am our troop's Cookie Product Manager and I actually love the job.  Most importantly, Ella loves that she can help me be in charge of passing out cookies and setting up cookie booths. Who would have thought this would happen?  Cookie hater to Cookie Product Manager.  Crazy!

I have been impressed with the Girl Scout organization thus far. Aside from learning the ropes with a new troop, the organization as a whole seems to be very well managed.  There are so many opportunities for the girls now and as they get older.  I imagine we are going to be involved for years to come. 

One thing I wanted to mention about Girl Scouts is that they are not associated in any way with Boy Scouts.  Not that I have an opinion about the Boy Scout organization, but I do know families who are not "friends" of the Boy Scouts because of political and ideological associations.  The Girl Scouts do not have these same associations so I am happy to be away from the controversy. In fact, Girl Scouts appears to be very flexible with regard to many issues.  

On the other hand, they are inflexible with regard to the safety of the girls. For example, all adults attending ANY event must be background checked through the online system and fully registered with the organization.  Other than this, there is a lot of options with regard to how a troop is managed.  I like flexibility!  Makes my job as Cookie Manager much easier!

Girl Scouts

Sunday, March 6, 2011

Ataxia

During Jillian's last IEP conference, her teacher asked if I'd noticed that her hand shakes. I had as a matter of fact, noticed her little hands shake when she is coloring, using a fork or placing food in her mouth, setting up her horses and building with blocks. So, basically, all the time! It's time to take her to her pediatrician to address this issue. When you have a child like Jill, you need to pick your battles, so to speak. I have noticed her tremor for maybe two years, but when visiting with her pediatrician, we always had bigger issues to address. Bigger fish to fry! Now that we have a break from surgeries and feeding therapy, maybe I can tackle this problem.

Ready. Set. Go.

Ataxia is the kind of lack of coordination and muscle control that I believe we are talking about with regard to hand tremors. There is a possibility that Jill's ataxia is associated with Klippel Feil Syndrome. There are reports of people with KFS who have developed ataxia due to spinal involvement mainly due to a compressed nerve. Jillian has had a full spinal MRI as well as multiple spinal xrays and no cord involvement was indentified so I would doubt this is the cause.

Another possiblity is that she has Arnold Chiari Malformation. There is a large percentage of people with KFS who also suffer from Arnold Chiari. One of the main signs is ataxia. Seeing that Jillian also didn't walk until the age of 2 does indicate she could have something wrong with her cerebellum, pointing to Arnold Chiari. She did have a normal MRI of her brain and this was ruled out. I do wonder if this could have been missed in a very mild form. (Arnold Chiari and KFS)

I have also considered that her neurological development is delayed and with time, her balance, coordination and hand tremor will improve. This is a real possibility. As I mentioned, she didn't walk until 2 and poor thing, once she learned to walk, she fell all the time! Her coordination and balance was definitely an issue. I carried her up and down stairs and got used to having a preschooler on my hip. But now, she is running, jumping and climbing stairs like a pro. Maybe her hand tremor will improve in this same way.

Lastly, many children diagnosed with one syndrome, have more than one diagnosis. It could be that Jillian has something we haven't discovered yet. Scary, but I must consider it.

I will be making an appointment for Jillian in the next week. As much as I'd like to sweep this issue under the rug, I worry about her not learning to write. She is beginning to recognize letters and I'd love to help her learn to control her movements enough to write those same letters.

Saturday, March 5, 2011

Dreaming of my Garden

I love to garden. I don't have a green thumb, but that doesn't stop me. Between my clay soil, poor drainage and limited space, I'm surprised we have any vegetation whatsoever. Regardless, I still have the gardening bug. It's in the genes. 

Last year I convinced my husband that we needed raised beds to avoid the pitfalls of gardening in heavy clay. He built these. They are quite large and just what I had in mind.


Today was a beautiful day and I started imagining what my currently barren raised beds will look like in a few short months. Last year, I had trouble with the new soil and many of my vegetables didn't produce. The sugar snap peas were fabulous, but the rest of my crop was nothing less than pathetic. I found that the pH and Nitrogen levels in this new soil were not adequate. So I will start amending the soil with some organic fertilizer soon. I'm determined to be more successful this year.

E got involved to a degree last year, but I have plans to get both my girls working hard in the garden this year. Not just helping with the watering and maintenance, but with the planning and choosing which vegetables to plant. I have a feeling that growing our own vegetables could be a good way to get J to try a new food. E eats any and all vegetables and she does love to walk out our back door and eat sugar snap peas right off the vine. I'm hoping to get J to do the same. 

Other than our raised beds, I have a separate flower bed that will be full of strawberries and another section for zucchini. I also have two blueberry bushes that are already blooming.


Better get planning...

Friday, March 4, 2011

Progress

J has had physical, speech, occupational and feeding therapy off and on from the time she was 8 weeks old at Mighty Oaks Children's Therapy Center. The therapists are amazing! Heather was J's feeding and speech therapist and we did get very attached. We both looked forward to seeing her each week. Deciding to end our therapy at Mighty Oaks was a very difficult decision. A decision I made in order to take a completely new direction with regard to J's eating. It was time to try something new.

Now here we are...two months later. During the height of J's eating aversion phase, she ate the following...

peanut butter (scraping it off bread to eat it)
milk
strawberries
cheese pizza
macaroni and cheese
crackers (limited to goldfish, ritz)
cookies (that melt in your mouth)
whipped cream
ice cream

I was really in a panic and started following a brand new way of dealing with severe food aversions by following suggestions in the book Just Take A Bite, by Ernsperger and Stegen-Hanson. I've not just taken some suggestions and implemented the changes, but I have been following the book religiously.

The result?  This is what J ate for breakfast this morning...

scrambled eggs
strawberries
milk
string cheese
a whole apple (minus the peel)



And she is no longer scraping the peanut butter and cream cheese off bread. She is eating whole wheat bread!

So just to illustrate the difference further than just what she has eaten today, this is currently her list of acceptable foods.

eggs
cheese (many different kinds)
pasta in a number of forms (not just Kraft Mac N Cheese)
bread
string cheese
yogurt
hot dog in a bun
chicken nuggets (Kirkland brand)
cereal (sugary, but fortified with vitamins!)
pancakes
whole wheat quesadillas
black beans
any cracker or chip
granola bar
strawberries
applesauce and apples (no peel)
mandarin oranges
bananas
grapes
carrots
jello
any cookie (without coconut or nuts)
milk
juice
water

It just excites me to know I can give her some juice or water to drink rather than having her go through huge amounts of milk which contributes to her anemia. And I have fun making jello jigglers, so for selfish reasons, I love that she is eating jello. There is nothing that makes me happier than to see her eat a new food. And it's starting to happen on a more regular basis. Not a daily occurance, but we are making progress.

For most children, feeding therapy works wonders and is absolutely necessary. As an infant, Heather and an occupational therapist at Mighty Oaks were very successful in getting J to eat her very first food, vanilla pudding. J was 15 months old when she ate her first solid food. Therapy was essential at that time. Maybe because of her unique personality or the fact that she is four, we weren't having the same successes. So now I am her therapist which makes sense because I am also the person who feeds her three meals and two snacks per day. Consistency for her is so critical.

Thursday, March 3, 2011

Face Picking

Dermatillomania is the compulsive need to pick at skin. The majority of people suffering with this chronic condition pick their skin to relieve stress or anxiety. When severe, this form of OCD can lead to open sores that never heal and scarring.

Dermatillomania

When children are affected with this condition, especially as toddlers, pediatricians encourage parents to "ignore" the behavior. Picking at skin can be a sort of pacifier to young children. Most children will outgrow this habit and are not at risk for a diagnosis of OCD and Dermatillomania as adults. On the other hand, if a child has sores or rashes from picking at skin, a physician may need to address these medical issues.

J picks at her face not to the point of leaving red marks or sores, but she has definitely developed the habit. As a parent, I worry and as much as I trust my pediatrician, I still need to do my own research. I found something really facinating in my google search.

Skin Pick

The article essentially states, children with speech delays are prone to picking due to the frustration of being unable to communicate their feelings and anxieties. Ding! Ding! Ding! That's us!  I know as J increases her vocabulary, she will outgrow this behavior. My pediatrician is right again...watch, but don't call attention to it. Obviously, if her picking was leading to sores or rashes, I would need to treat it differently. Another reasont to treat the condition seriously, if she didn't have an obvious speech delay and I thought there may be another underlying anxiety. Both of these situations would require professional help.

In adults, skin picking can have serious physical consequences. Sores can stay open and lead to infection and future scarring. Adults with any form of clinically relevant OCD will require mental health treatment to find the underlying stress or anxiety causing the compulsive behavior.

That's not us, but I don't want anything to happen to this face!

Wednesday, March 2, 2011

Playing in the Rain

These pictures are for my mom. She wanted to see pictures of her grandchildren. Here you go, Mom!








Tuesday, March 1, 2011

Connections

I was almost assaulted in the park today. Another mother came at me after she heard these words out of my mouth..."early intervention".

She went into complete hysterics...

"Oh my God, my daughter is in early intervention. Why is your daughter? What is wrong with her? Is it chromosomes because my daughter has a chromosome deletion? My daughter's condition is rare...is it rare? When was it diagnosed? Who diagnosed it?"

At this point she took a deep breath and then proceeded her line of questioning.

"Have you had full genetic testing? Or just the chromosome blood test? Is she verbal? How old is she? Does she have a feeding tube?"

Not even bothering to get any answers other than my quick yes, no or maybe, she continued even further.

"I need your phone number. What is your name?" 

It was nice of her to ask my name a half hour into the conversation. At this time she whipped out her cell phone and we exchanged phone numbers for what reason I still wasn't sure of. I didn't know what had hit me. But whatever this connection was, I liked it. I liked that she knew the difference between genetic and chromosome testing and when I told her we declined genetic testing she knew immediately why. I loved that when I said J doesn't have a feeding tube, but food aversions, she nodded her head and I knew she understood how serious food aversions can be. Basically, I loved that we spoke a language that no one else at the park could speak. The only way I can explain it...fun! My blood was moving again and I was energized. 

I did confess to her that I didn't have other mothers to talk to. All my friends had typical children and didn't understand. We agreed to get our girls together to play. And...we also discussed team homeschooling after EI. We may have been jumping into that one, but there are so many possibilities when two people make a connection!

Sunday, February 20, 2011

Old and Fragile Mommy

My seven year old is 55 pounds and a very tall 52 inches for her age. She towers over other first graders at school and she may pass me up one day. This is the sweet thing about my big girl...she still loves to snuggle. I love it too! She curls up on my lap like a tiny baby, but her long legs hang off the chair. My sensitive girl needs this time each day with her mom. And her mom loves it. Well, I love it until I get an elbow in the side or a 55 pound adjustment that literally takes my breath away. I'm always telling her to be gentle.

"You are such a BIG girl, E. Be gentle!"

"E, you are so BIG, when you move your legs like that, it really hurts."

I could go on and on. Recently though, I've been thinking about my choice of words when I'm struggling to stay bruise-free during a snuggle session. This is what I have realized. The word "big" to a girl is a very bad thing. I wouldn't want to be called "big"! Even if E isn't bothered now, as she gets older and more aware of her body, she won't want to be called anything close to big. The phrase "big girl" we use all the time to describe going from toddlerhood to childhood. But at some point, it's going to become an insult. So I'll be changing my tune! As much as it pains me, I'm going to switch from "blaming" E for being so big to changing the focus on myself. I think I'll just tell her, "Mommy is getting old so be gentle." And besides, maybe it isn't that she is getting so big. Maybe it is that I'm getting more fragile....and cranky in my old age.

Saturday, February 19, 2011

Soccer

I hate to admit, but I was wrong. Was...past tense. I'm sure it will never happen again. And this is even more difficult to report. Today, my husband was right! It happens.

I signed J up for a soccer class a couple weeks ago. She is 4 and I thought I had registered her for a class with 3 and 4 year olds. Knowing she is delayed, I thought this would be adequate for her abilities. It turns out she was mistakenly put into a class designed for two year olds. Much to the chagrin of the other parents. Here is our little four year old running faster, communicating and expressing herself, and following directions. While the other kids are just learning to follow instructions and require parents to direct them at almost every transition. She is a superstar in this class.



Today I attended her class for the first time and immediately noticed that her talents were a little above the other children. As any parent, I want to challenge my children.

"Let's get her in the next level," I said.

Push, push, push! 

And my husband responded, "She doesn't need to be challenged, she needs a confidence builder. Leave her alone."

Hmmm..ok.




I loved watching her! The coaches are well aware of her abilities and when we were all under the parachute, talking about colors, the coaches repeatedly turned to J to answer their questions. They knew the other children were just learning their colors and even if they knew them, most wouldn't be able to quickly report where they saw the color red. J had all the answers. She was the child with every right answer and she knew it. So in answer to every one of their questions, she confidently yelled her replies. Where else would she be able to show this much expertise except under a parachute in a soccer class for two year olds? Definitely, not at school. And not at home with a seven year old sibling.

So she is going to stay in the class. I'm not sure how the other parents are going to like it. She does get a lot of attention. And seriously, why would I care what they think anyway? 

Friday, February 18, 2011

Yes, girls wrestle!

As a family, we have fond memories of the many hours we have spent in hospitals. Mainly, having survived the surgeries and scans, doctors appointments and the waiting game, has made us all very tough cookies! The memories are bitter sweet. Not every moment was spent wringing hands and wiping tears. At times we laughed and joked. But there is one memory I have of our discharge from Shriner's Hospital. J had a surgery to correct a sprengel's deformity. This was major surgery resulting with incisions that ran along her clavicle on her front side and another running the entire length of her spine. That is major surgery!

We spent a few days in the hospital and had an uncomplicated recovery, thankfully. The surgeon who is a pediatric spinal specialist discussed a few things with us before he turned the general discharge instructions over to the nurse. The nurse needed to provide us with J's physical limitations during her recovery. Essentially, J was encouraged to use her arm when she felt she was ready and as she read over the other instructions she said, "Oh, and if she has any siblings no wrestling." She paused and continued, "But you have two girls so you don't need to worry about them wrestling." My husband and I looked at each other like...what?!?!  Ummm...I don't know about other girls, but our girls wrestle, tackle and rough house on a daily basis.

Now whenever my girls decide to wrestle, I have to chuckle. Ahhh..memories!





Someone is going to get hurt!

Thursday, February 17, 2011

Food Book

Another food activity to get my little one to eat. This is from my fave new book....Just Take A Bite: Easy, Effective Answers to Food Aversions and Eating Challenges by Ernsperger and Stegen-Hanson. Let me just say this book is not for the typical picky toddler. This book is about severe food aversions for children with developmental disabities, autism, multiple food allergies or medical problems related to delayed eating.

One of the suggested activities is to make a journal about new foods. The idea is that each time J eats a new food, I take a picture of her and she gets to glue it into her food journal. I'll let her color and decorate the page with glitter as a kind of celebration to each new food consumed.

I put the 30-40 page book together with construction paper and string for the binding. I wonder how long it will take to fill this book with new food pictures. I'm not kidding myself...probably a very long time! But we've got time!


I printed out some pictures of J eating as a baby and toddler. Then I simply made little notes about each picture and the food J is eating.



I'm excited to have J show this book to grandparents and friends. It should become for her a book to brag about. It's good to celebrate successes in this way. Hopefully, we'll have successes, but I'm getting ahead of myself. 

The idea of the food journal is not only as a brag book, but to increase a child's knowlege of food. We will probably talk about what is a fruit or vegetable, healthy choice or treat, textures and how things taste. The more knowledge children have about something that produces anxiety, the less anxiety they will feel. It's a way to become familiar with a scary thing like food.

There is another activity in the book I'm so excited about. It's how to make a spit bucket. Totally gross and ingenious! I'll work on that early next week.

Wednesday, February 16, 2011

Budget Cuts

I attended a budget planning meeting last night. The school board of our local school district held the meeting to address upcoming budget shortfalls that are going to affect our public school system. Really affect our public school system! The main point of contention being the proposed closure of three elementary schools. It is unfortunately happening all over this country due to the recession and high unemployment. Education is suffering and our little area of the world is not immune to these severe cuts and changes.

I feel very fortunate in that my children won't be hugely affected. Their school is not one of the schools to close and we will not be taking on a large number of students into our school. Our enrollment will not change next year. So again...I'm feeling very fortunate. But at the same time, I think about the kids who will be affected. I hate to see a school close. To see the children have to make new friends at a strange new school. Many of them will be bused far from their neighborhoods. One group of children will be forced to ride the bus for 45 minutes one way to attend a school south of our town. A sad situation, but arguably a situation that can not be avoided in our current economy.

One thing that I observed last night was how emotionally charged people became. If it was my school, I would be just as upset. But one thing that was disturbing was how all of these parents needed an enemy. Someone to take their frustration out on. This enemy, as I'm sure you can guess, was the school board. They knew they would hear yelling and see fingers pointing in their direction over and over, but I was hoping it would be a little more civil. The school board members did not create this economy. They are not part of our legislature and therefore, did not make laws and regulations in regards to school funding. They are parents too. Just hardworking intelligent individuals who may not have children in the elementary schools, but who do have children in the school district. I sincerely believe they care about these decisions and how the cuts will affect our children's education. Many people last night just needed to be heard. They needed to raise their voices. And they did! 

Not much was accomplished other than learning more details about the cuts that will be taking place over the next two years. The actual budget will not be finalized until May or June. After that time, firm numbers will be in place and then decisions about cuts can be made. 

Like I said, I feel for the parents of children at the schools about to close. And I'm in a good place so selfish as it may sound....someone has to suffer and sacrifice in this recession. Something has to give. People in this district have some resources at their disposal. Some of them do have the funds to go to private schools if they choose. Others may be able to form car pools to school so their kids won't have to be bused the long distance to another school. There are options to get through this tough time.

There is one group of people who do not have options to get through an environment of budget cuts. Those are children with special needs. Many children with special needs do not have the option to be homeschooled (depending on their medical and emotional needs). Many of these children also do not have the option to be schooled in a private school. The school district is the only hope they have of a quality education. So when people mention closing the school established for special needs high school students, it is tough for me to hear. These are children who were not successful in our traditional high schools. If their school closes, they have no where to go. We need to help these children because they are a fragile population of kids. It is easy to look at that small population being affected and come to the conclusion that because it only would affect a hundred or so children, cuts should be made there. Thankfully, the school board understands these children are disadvantaged and don't have options the rest of us do. Closing this school is only going to take place after all other cuts are made. I'm hoping it doesn't go this far.

So we'll just anxiously await the firm budget numbers coming out this spring. I'm hoping for the best. I love my daughter's school and really believe she is getting an excellent education. I would hate for that to change. 

Tuesday, February 15, 2011

Food Pyramid

We absolutely love J's Speech and Feeding Therapist, Heather. She has known J since she was a tiny baby. Heather is tremendously kind and talented in her field. Everything you want from a therapist. Regardless of these facts, therapy wasn't working for J. It's just too stressful and stress is counterproductive to eating and trying new foods when you are a child with severe food aversions. This is one of those times when a parent has to make a decision. Do we continue with therapy with a highly trained specialist that we adore?  Or can I get her to eat myself? I usually choose to stick with the specialists. They do have the techniques and knowledge from years of specialized education to treat a child like mine. But this is a unique situation that is going to require a unique plan. So we have officially ended our therapy appointments. And I'm it! Time to get my girl to eat.

Have you ever found something so fabulous that you want to share it with everyone you know? Shout it from the roof tops? Or write about it in a blog? :)

This is one fabulous book....

Just Take A Bite by Lori Ernsperger, PhD and Tania Stegen-Hanson, OTR/L

I'm going to be writing a lot about this book, but right now, I will just share one activity J and I worked on today.

We created a food pyramid. This is to get J to recognize what foods go in different catagories and will also help her to see how different foods are important for a growing body.

We started with a piece of butcher paper. I drew the basic pyramid and added the labels to each section.





As I cut food pictures out of magazines, J glued them into the right section of our pyramid.


She had a good time with the glue! In the end, we had a very nice food pyramid showing all foods that I would love for her to eat along with some familiar favorites.


This led to a short discussion about the cookie on the top. "It's the smallest part of the pyramid for a reason. You should eat just a little." I hope she got the message.

This activity introduced J to food groups. One small part of our "plan" in my new role as therapist is to increase J's knowledge of foods and digestion. I have put the pyramid on our pantry door and we'll continue to discuss food catagories. And I'm sure we'll continue to argue about why cookies aren't located further down the pyramid.

Thursday, February 10, 2011

Pity Party

Pity
Def: A feeling of sympathy: a feeling of sadness because of
another person's trouble or suffering, or the capacity to feel this

A regrettable thing: a sad or regrettable thing

Mercy: a willingness to help or forgive somebody

Synonyms: commisserate, console, sympathize, empathize,
be there for somebody, show concern, comfort

(Encarta World English Dictionary)

Just reading the definition, pity doesn't sound terrible. "A feeling of sympathy" sounds sweet. Empathy is a good thing, isn't it? As a parent of a child with special needs, I can say I tire of other very well meaning parents assuming I will accept some pity. It isn't just a person's statements that can be troubling. There is a look of pity that I get....well, basically everywhere. I'm so familiar with that look. That look makes my skin crawl. It's a look that says any combination of the following:

Poor thing!
I could never handle that!
How sad!
That's unfortunate!

It's a look that needs no words. You feel sorry for me and think I'm a poor pathetic mother who can't in any way be happy with her life. That's the part that is so disturbing. I often find myself defending my happiness and contentment. I love my family, my children, and my life. I'm happy...no, really. I am truly happy with my family and my life! That doesn't mean I have a smile on my face 24/7 and never have a sad feeling. It means I have just the same potential for happiness in my life regardless of my challenges.

I'm sure I went through a period of adjustment after we got J's diagnosis, but now I don't think about how unfortunate our situation is because I don't believe it is. When I talk about J's eating issues or an upcoming surgery or procedure, it's just what is happening in my life. By communicating this, I'm not searching for sympathy. It's just information.   

It's the assumption that others think I'm suffering or that my child is a "regrettable thing" (as stated in the above definition). But most importantly, I worry about J noticing that look someday and being as distrubed as I am. Because I don't want her to think she is weak and pitiful. I want her to be strong and self-sufficient. 

When I'm carrying my four year old on my hip because she isn't confident in her motor skills if bumped in a crowd of people, don't give me a look of pity. If you want to help, come over and hold J. My arms do get tired! Because pity doesn't help my situation. I don't have time for it.

Tuesday, February 8, 2011

Sick Day Activities

The kids are sick and my husband is on a business trip. This is a total nightmare scenario for me so I thought I'd share some of our activities over these three memorable days. I'm hoping it doesn't extend into four or five days.

1. Took two baths a day at a minimum. Relaxes my little babes and keeps them from fighting...for a short time.

2. Baked cookies and cupcakes for a school Valentine Party later this week. A party we might not make if we don't get well soon.

3. Played UNO at least 100 times.

4. Downloaded three free children's apps on my Ipad then realized that you get what you pay for.

5. E wrote a book and drew some illustrations.

6. Played some of our favorite games: Wildlife Bingo, Cranium Lunch Munch, Candyland, Pop The Pig and Spanish Memory. Some of these games played multiple times.

7. Created a zoo...Book Activity.

8. Listened to E read some Amelia Bedelia books.

9. Listened to E talk and talk and talk. 

10. Read I-Spy books.

11. Helped J give her horses a bath.

12. Let my kids drink a pop...desperation here!

13. Helped E search our online library catalog of books and movies and put many many items on hold. Too bad we can't go pick them up.

14. Played school and Teacher E taught us all about even and odd numbers. 

15. Played with our guinea pig, Snow, and basically let her run wild for hours.

16. Built a fort.

17. Colored and did art projects which everyone thought were boring!

18. Turned out the lights and played Hide And Seek with flashlights. Not boring!

19. Snuggled with these two girls and watched several movies.

Mommy has officially run out of ideas so it's time for us to kick this virus! Unfortunately, I'm pretty sure I'm stuck for at least two more days as E had a fever of 103 in the night. Maybe we'll take a field trip to see Dr Eddie. 

Monday, February 7, 2011

Equine-Assisted Therapy

J loves horses! She has little plastic horses all over the house. Anytime she sees me anywhere near the floor maybe to bend over to pick up one of her stray horses, she runs and jumps onto my back and commands me to get going with a loud "Giddyup".

Lately she's been asking about riding a real horse. And a pony ride at a local fair just isn't going to cut it! I found quite a few stables that cater to special needs children in our area. There are actually horse stables like this throughout the United States because it is a hugely successful form of therapy for children with communication disorders, autism and emotional or psychological disorders. Working with horses is calming and helps children learn to focus their attention. Equine-assisted therapy is also known to help children with cerebral palsy to learn to balance and adjust their bodies as a horse moves.

I want to get in on this for a few reasons. Obviously J would benefit when she already has such a love for anything related to horses. It could also be a way for her to gain confidence in a hobby that is solely hers. Her sister does so many things before her like swimming, soccer and ballet, but getting her involved in an activity that her sister doesn't know anything about could really boost her self esteem. From my perspective, I would love to see her learn to balance and increase her coordination in relation to the horse's movements. And it would be fun!

Here is a link to a number of organizations offering therapeutic horse riding.

Therapeutic Riding

Sunday, February 6, 2011

Book Activity

My two girls love the book, Goodnight Gorilla by Peggy Rathman. It's a sweet book about a mischevious gorilla and his nighttime escapades in the zoo.



Let me just say that this activity was inspired by the following situation... one sick mommy and two sick kids who desperately needed a distraction one Sunday afternoon. It worked and kept everyone busy and sane for a long time! Success!

We started with some empty boxes from the garage. I worked with a box cutter and E worked with some scissors. We cut long strips of carboard out of the boxes to make what would look like bars. These became the animal cages in our pretend zoo.



Then E made signs for each cage and filled them with interesting creatures. I think we ended up with a ladybug pillow pet, a cat, horses and a live guinea pig.



Our zoo!


E made tickets which she hole-punched as we walked through the zoo exhibits.

Then we had a breech in animal security. The ferocious guinea pig escaped from her cage.


Thankfully, the guinea pig (E said she was from Argentina....an Argentinian Guinea Pig.) was a friendly creature and just nibbled on some toes and a couch before being caught and returned to her home. 

Have I mentioned how much I love guinea pigs?   

Saturday, February 5, 2011

The Systemizing Brain

I love to watch my children play. E is always in some form of imaginitive play and has preferred this type of play very early on. J on the other hand, is somewhat delayed in her ability to role play. She prefers to play independently maybe because of her communication delays. I've noticed as her confidence in speech grows, she does more imaginitive play. She has recently been interested in playing "babies"...she's the mommy and I'm the grandma! (Must be those few strands of grey hair I've discovered. I'm now Grandma-material.) When playing Barbie's or playing with her doll house, she is very focused on the characters and how they are interacting. This has been exciting for me to watch.

Even as her communication improves, she continues to display an interesting play characteristic. She loves to line up her toys!  LONG lines of horses or cars...


or spoons!


I'll admit playing with spoons is a little strange. It proves just how much she likes to take items and line them up on my kitchen floor. She'll make lines out of any group of objects.

I wanted to know what this was about and in my research, I was pointed in the direction of autism. Apparently, lining up and organizing toys in this way is a sign of autism. It's what one researcher called the Systemizing Brain (Simon Baron-Cohen). Granted some of Baron-Cohen's research and conclusions have been criticized, but one aspect caught my attention. He believes children with autism are "change resistant" and prefer order. In this way, they make lines of their toys in an attempt to make order out of chaos. It doesn't mean that every child who lines up their toy trucks is autistic. Many little children organize their toys in this manner. But for a parent who is already questioning, this behavior may lead to a more thorough investigation. It is tough, but I believe parents must follow their intuition. If something doesn't seem right, journal about what you are observing in your child, and then bring it to the attention of your pediatrician.

In J's case, I'm just going to continue to watch her play. We have enough diagnoses to keep us busy for awhile so I'm in no hurry to add another to our list. I have a feeling as she learns to communicate better and with more control, she'll outgrow this fabulous spoon-lining trait. But if not, I've got some ideas and can follow it up then.

Friday, February 4, 2011

Lovey

E's lovey is "Bear". Here is a picture.


And here's a closer picture. Poor Bear has been mistaken for a dog toy once. He's been through a lot!


E showed me last night... he has holes. What is a mom to do at 9 o'clock at night when a daughter has school in the morning and her Bear is literally falling apart? I told her the following: "I will do my best to fix him. I promise." Not a good plan. I'm already regretting my promise. Bear can't be fixed. He is threadbare. He is 8 years old. He is not going to last forever. I was totally irrational and worried E will never sleep again, thus my promise to make everything right with the world. I could use a little sleep myself, but allow me to panic a bit. 

E is a sensitive child. When Bear leaves this world, there will be tears, sobbing and tears....for days. Maybe months. All I know is I would do anything to prevent this from happening. I've been on Ebay searching for a replacement. My husband has searched the internet far and wide. I even contacted the company that made Bear. We discovered Bear is a one-of-a-kind. Why didn't we think about that before placing the little stuffed Steiff into her crib the day she came home from the hospital? I guess we didn't expect E to adopt Bear so quickly. 

So we have some work ahead of us. After trying to patch Bear this weekend, I'm going to prepare my family for the worst...the loss of our dear Bear who kept E asleep each and every night. And after preparing my family, I'm going to get back on Ebay and contact the Steiff company because there has to be another one out there somewhere. I'm panicking again!

But in the end I think I'm headed to Build-A-Bear to bribe my little girl into sleeping with a new lovey. If it means a good night sleep, I'll buy her whatever she wants and all the accessories to make this a smooth transition. There's not a chance this will work!  

Thursday, February 3, 2011

Big girl blues

It's tough to be the "big girl" in a family. The eldest child has a lot of responsibilities as compared to their younger siblings. E told me this morning that it wasn't fair she had to get her own shoes and put her breakfast plate away when J gets waited on hand and foot. Not exactly true, but J is younger, shorter (for reaching the kitchen sink) and less verbal. She just isn't able to do the same things as an advanced seven year old. Special needs and birth order are two very difficult subjects. So this morning E went to school thinking about all the inequity in her home and how she feels like "Cinderella". (Yes, she said that once.)

Especially when J is recovering from a surgery.  Poor E!


In my defense, I do ask J to hand her breakfast plate to me.  When we clean her room, I do ask her to help me put all her horses into their bin. Sometimes I ask her to hand me books which I then place in her bookshelf. On the other hand, E gets a note on her white board stating her chores..."Clean your room" in big black letters. That is kind of sad! But she makes such a mess!! If you are capable of making that mess, you should be able to clean it up, right?!? Well, not exactly. I do help E clean her room by giving her tips on organizing the mess. I'm like the professional organizer on Hoarders. I will even help her make piles....books, dolls, papers, etc. So she isn't exactly alone. 

Regardless, it's hard to be the overachieving responsible child. A child who is expected to do more, no matter the reason. What she doesn't understand is that someday she'll benefit from being this girl who was pushed a bit and expected to do well. Not that we don't expect big things from J...it's just different. 


Here are some interesting facts about first born children...

1/2 of all US Presidents were first born children
21 of 23 first astronauts were first born children
2/3 of entrepreneurs were first born children

(from Birth Order and Personality)

I totally understand what E is going through. I've been through it. I was a first born child, my brother was cute, and it drove me crazy! But I survived and like I described to her this morning, she will too.

Wednesday, February 2, 2011

Ok...AWESOME!

 I discovered this book at the library....Science Arts by Kohl and Potter.  I want to buy this book and work through every single activity. I would highly recommend finding one at your local library or Amazon. It's very creative and has activities for all ages. I have Math Arts on hold at the library and I'm hoping that book will be just as valuable for us. 

J and I tried this one activity from Science Arts the other day. 


Get yourself some cornstarch and food coloring.





Then I found an aluminum pan and filled it with about an inch of water. I added just enough cornstarch to make the water cloudy. Then I let J pick a color and drop it into the pan.  Such cute little hands!  :) 


The cornstarch slows the movement of the food coloring so it doesn't mix in right away. You can kind of play with it. I gave J this blue straw and let her go to town making designs.  


Her final design....


We played with a number of colors before putting it away. Very inexpensive activity and great for learning colors and being creative. Children as young as two can do this activity with help. You wouldn't want to set them loose in your house with food coloring, but J was able to do this whole project with minimal help from me. She loves to be independent.

For older kids it is a fun science activity. The book explains that older children can drag the straw in a straight line through the food coloring. This is a lesson about symmetry. As you drag the straw in a straight line, you should see two identical patterns on either side of the line. The book also suggests adding a couple drops of cooking oil to the pan.