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.

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.

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! 

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.

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

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.

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...

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.

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!

Playing in the Rain

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

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!