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


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."


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

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, 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 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


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'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


 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.

Tuesday, February 1, 2011

Eat this, please.

I have this cereal in my pantry...

I would like to meet the person who decided it would be a good idea to make cereal out of a candy bar. Serious sicko! And I know you're thinking I'm encouraging the sicko's behavior by buying it. Before you throw more guilt my way, let me tell you this. Reese's Puffs cereal is loaded with vitamins and minerals. Some of which are difficult to get enough of even with a nutritious balanced diet. 

Dr Sears says this about choosing cereals for your child.

Yes, cereal is a favorite family breakfast food, but think about what nutrients cereals are the best source of. The list includes: fiber, protein, folic acid, zinc, iron, and B-vitamins. Most other nutrients can be found just as readily, if not more easily, in other foods. You don't need to get your daily vitamin C or calcium from your cereal bowl. Choose cereals that are highest in the nutrients cereals do best. 

I have a child who is seriously anemic. She needs iron in large quantities and Ferrous Sulfate drops don't work for her in the quantity that she would require to raise her iron levels. Since she won't eat iron-rich foods or take vitamins, I'm stuck sneaking it in tempting sugary cereals and slipping some iron drops in her hot chocolate. (Yes, she gets a hot chocolate a day. Don't get me started on that one. It's the only way I've been able to hide the terrible tasting iron drops.) But it's working! She is eating this cereal every morning. It gives the average adult 25% of the recommended daily allowance of iron. That's huge for my little girl and will, along with the hidden drops, hopefully get her out of the deficiency she is in. It's not as good as a vitamin or ferrous sulfate drops, but it's the best we can do. One thing I've learned about raising a child with special needs...things aren't always what they seem. I wouldn't have touched this cereal with a ten foot pole before J came along. And now it's breakfast!