Lilli

Lilli

Saturday, April 28, 2012

When Life Gives You Lemons, Make Egg Salad Sandwiches


Whenever I slip down into that trap of feeling sorry for myself, I try to remember all the ways I am blessed. Recently, Lilli tried some more new foods. She has been eating egg salad sandwiches and chicken salad sandwiches. This is new. A sandwich may not seem like a big deal to anyone, but trust me, it is monumental in our house.
Egg salad sandwich with canola mayonnaise on multi-grain, gluten-free bread.  
What a pleasure it is to feed her an actual sandwich. I say "actual" because it is not pureed, it is not "altered," it is a REAL sandwich, and she has only been eating sandwiches for a few weeks now. It is so exciting to me, I have taken several pictures of her sandwiches. I know that sounds a tad bit over the top-crazy to take a picture of a plate with a sandwich on it, but it is meaningful. I will forever be grateful that Lilli can bite and chew without choking. It has literally taken us years to get to this point. I pick the sandwich up and hold it so it doesn't slide apart. She bites it, but I still kind of help by tearing it away from her mouth. The biting is still a little new. I have to be careful, though. She bit my finger last week by accident. I can't get too close to her teeth or yikes! Eight year old permanent teeth!


When Lilli was a toddler, she ate sandwiches. I remember her eating grilled cheese sandwiches and peanut butter and jelly, cut up into tiny pieces. Lilli always had trouble with feeding. She had a suck/swallow reflex issue from birth. We had gotten to the point where she ate mostly baby food but small pieces of soft cut up sandwiches. But then she began vomiting the sandwiches and had several really bad seizures. One of them lasted about an hour, in the ER. They had to try various drugs to get the seizures to stop. After that one, she could not eat without choking. It was like she forgot how to chew and swallow. We had already been pureeing a lot of her food from the beginning, but from that point on, we pureed everything.

We pureed Lilli's food for every meal for over three years.


I will never get over that. It might have even been four years. All the details blur together sometimes. I am tearing up right now thinking about it. Jasen reminded me that we started out with a baby food grinder, then went to a motorized baby food grinder, then went to a Magic Bullet. When you have a little baby, making baby food might be fun, might make you feel good and all healthy and super mom-ish. But when you have a child with special needs and you're pushing on that Magic Bullet six times a day for meals and snacks for years, it gets old. A Magic Bullet is a total conversation ender. I began to despise the loud high pitched "WHHHHEEEEEEEEE" in the middle of sentences with my husband at mealtimes. If you don't know what a Magic Bullet is, it is a small blender intended for smoothies and other pureed things. You can grind coffee in it. Jasen describes it as a "blender on steroids." If you blend something for too long or if the consistency is too thick, it can ruin the motor.


We burned through six Magic Bullets.
We perfected the art of pureeing meat, eggs, and all types of vegetables and fruits. Trust me, it is not as easy as you think. You can't just throw a hunk of hamburger in a Magic Bullet and have it turn out like a frosty. If I ever lose all of my teeth someday, my dear husband will know exactly what to do for me. If it is too thick, the blades won't turn. If it is too runny, it's just yucky and drips all over the place when you try to put it on a spoon. If we got the consistency wrong and there were little pieces of unblended food in it, Lilli would choke and vomit. Many meals we spent time cooking, pureeing, and spoon feeding it into Lilli, only to have her throw up the entire meal. Such a feeling of defeat comes over you after all of that time and effort for just one meal. I also remember just breaking down into tears when the rubber ring inside the Magic Bullet would come loose and get pureed into the precious food, and we would have to throw the entire meal out.


We also became experts on spatulas. We have a sizable array of assorted spatulas in our utensil drawer, that any culinary professional would envy. The long skinny spatula is key to removing the pureed dinner from the tall Magic Bullet cup. We know we are different. I gave Jasen a bunch of spatulas for Christmas one year, and he was genuinely thrilled.


We laugh at the memories of people coming over to visit and looking at Lilli's dinner. Jasen always thought it would be funny to offer someone a spoonful of pureed meat and beans. I'm not sure they thought it was funny, but we were grasping at straws to find humor in our monotonous Magic Bullet routine. Then there were all of the times when we would be out on the road somewhere with a cooler packed with Lilli's pureed food. Jasen and I would have to do rock-paper-scissors over who would have to be the one to go into a Subway and politely ask "Would you please heat up this baby food for us if you don't mind?" It would be meat and vegetables, pureed to a gross looking brown, and put in an old, large jelly jar. (Jasen wants me to add that he personally thought it tasted very good. It was just in milkshake form, that's all.)


Lilli ate it like a champ. Poor girl.


We kept at it, even when there was no therapist or doctor telling us what to do. We were just figuring it out on our own at that point, because it seemed like the right thing to do. When Lilli was younger, we pureed her food and spoon fed it to her in order to avoid a G-tube, which one doctor recommended. As she got older, it was because she kept taking steps back in her ability to chew and swallow after each bad seizure. We wanted to give Lilli the healthiest foods possible. We felt that good, healthy food would help her brain to develop as much as possible, despite the brain damage she had sustained at birth. A feeding therapist had suggested that we give Lilli anything at all that she would eat, even if it was junkfood. Just to get calories into her. We did not agree with that. Instead, we researched healthy foods high in calories and nutrition. Avacadoes. Coconut oil. Fresh vegetables of all kinds, and home cooked, organic meats. We read several books, including The Maker's Diet, and Breaking the Vicious Cycle. We decided to put Lilli on the "Specific Carbohydrate Diet," to help her seizures and her gastrointestinal issues. Some people might think we are irresponsible for doing things without a doctor's instruction. I would say that doctors do not know everything. When there are no answers in black in white, sometimes parents have to do the research themselves. We put her on the diet, and talked with the pediatrician about it. She was a lovely person, but did not have a clue about the diet. Even so, she supported us because she knew the kind of parents we were. She told us that as long as Lilli was getting adequate nutrition, she was fine with it. We had blood work done to check Lilli's nutritional intake. Lilli's levels were all good.


Pureeing was actually a good thing, in many ways. We were able to get a lot of healthy things into Lilli that a toddler would not typically eat. Kale, beets, homemade soups with tons of veggies and broth, organic meats. We also gave her supplements and a probiotic. It was a Jessica Seinfeld Deceptively Delicious mother's dream.


Well, not really.


If I could give credit to the number one person who taught me how to cook, it would be Lilli. She taught me because I did so much research and tried so many things for her. I bought a yogurt maker and started making batches of homemade yogurt every week. I wrote everything down that we fed Lilli. Putting Lilli on the diet and recording what she ate allowed us to see patterns. We realized that she had food intolerances. It was too much of a coincidence when she ate nuts or fruits with tiny seeds such as blueberries and strawberries, and had seizures or got sick right afterwards. It did not take rocket science or an allergist to tell us to not give her those foods again. No one knows your child as well as you do…as a parent you perceptively notice the subtle or not so subtle effects foods or medications have on your child.


We started to do our own version of "feeding therapy." Lilli ate all of her meals pureed, but we gave Lilli pieces of cheerios to try and re-learn how to chew. We tried raisins. We tried those Gerber "star puffs." She slowly got re-acquainted with the process of chewing and swallowing solid food. We added chunks of food to the puree to help her with texture. The process was very slow. When you are moving at a snail's pace, it is hard to see progress. I started writing things on our calendar and in journals to document Lilli's progression. That helped me a little whenever I was feeling down.
And then one day, she tried a "Smart Puffs" natural cheesepuff.


Ever since the miracle discovery of the alluring power of a cheesy puff of air (that apparently makes you smarter), Lilli's eating has continued to improve. We got her to eat green beans – with the promise of a cheesepuff afterwards. We got her to eat small slices of cooked carrot – and then she would get a cheesepuff. When we got to the meat stage, it was tough. We went through a lot of cheesepuffs getting Lilli used to eating meat. We dipped the bites of meat in broth, pureed cauliflower or butternut squash so it would not be so dry. Meat took a long time. She hated chewing meat. I ordered "Smart Puffs" by the case on Amazon. I took a steak knife and sliced the cheesepuffs up like slicing a pepperoni log, to make them last longer. Oooh…that made her mad. She just wanted the whole cheesepuff, gosh dangit. Cheesepuffs were not technically allowed on the Specfic Carbohydrate Diet, but we bent the rules because it was the only trick we had in the bag. We have used those cheesepuffs for motivation for a lot of things. But I do not slice them up anymore. I wonder if anyone else in the world has ever sliced up a cheesepuff with a steak knife.


Now you know another part of the reason why Lilli typed "Hate chicken" to me when she could finally tell me her strong opinion about meat. She is talking about plain, roasted chicken that we pureed for years. Then dipped in pureed cauliflower or pureed butternut squash. Now she is fine with a chicken salad sandwich. Just don't try to give her a plain piece of roast chicken on a fork. (Without a cheesepuff.)


This experience with feeding difficulties is one road we have traveled as parents of a child with special needs. It has been about five years now, since that very first push on a motorized baby food blender. We thank whoever came up with the recipe for "Robert's Smart Puffs." We now reserve cheese puffs for a few select circumstances and things Lilli is working on in therapy.


So that is why I feel so blessed to give Lilli an egg salad sandwich. We have not traveled with Lilli in quite some time. The last time was actually last summer. The next time we take a short road trip, I will be overjoyed to be able to pack Lilli a sandwich, some cut up apple, and carrots.


Have you ever heard of a mom who was so delighted to pack her kid's lunch?

 

Friday, April 20, 2012

Watch Out for that Crazy Mom in Target


It's six a.m. My husband is already gone for the day. All three kids are sleeping in my bed. (The only one who started out there was Lilli). Lilli is hooked up to her pulse oximeter; lit up red and green numbers blinking on the nightstand next to her. Even so, I keep sneaking in to check on her. I am already on my second cup of coffee; been up since 5.

I got up to say goodbye to Jasen, and I could go back to bed if I wanted to. But I know I would not be able to sleep. I'm currently in a vicious cycle of caffeine and anxiety. I have been mentally spiraling down in the last few weeks. I think what started it was the fact that the new nurse did not show up for three days. So I called the nursing agency and said, "Hi, I don't want that nurse anymore, I can't depend on her." We temporarily did not have a nurse. No biggie. But as a result of my calling the caseworker about something else, she saw in our file that it was time for a review. Another nurse came to the house to evaluate Lilli and re-assess her. We are one of those families that kind of "falls between the cracks," I guess. The results of the re-assessment? We do not qualify for nursing help anymore. The reason why? Because we have a new caseworker. The last caseworker took time to hear my story; the details that don't get put on paper in official black and white. She was a mom. She was compassionate. I know some people with more needs than our family might read this and get irritated. I know there are families with much greater medical needs that we have. We are blessed. Lilli is not on a ventilator. She does not have a g-tube. My caseworker just had mercy and granted the nursing care for us because I explained Lilli's uncontrolled seizures, and I needed help. She told me we technically did not fall into the right category for nursing care, but she had the power to grant it to us anyway.

Having a nurse this past year changed my life. It was not a perfect situation by any means. But now that we do not have a nurse anymore, I have to re-think how I do things. The biggest change is my constant mental state of having to be alert and aware of Lilli's needs. I miss that mental break. A good nurse in home health is a rare gem. I learned a ton from our experience. But now, it's back to no nurse. It is one year later, and a lot of things have changed. We have the ipad now. We have an ABA therapist. Josh and Chloe are just now getting to the age where they play with each other. Chloe can take care of herself more. There are a lot of good things that have happened in the past year that I can be positive about. Writing about it helps me to focus on the big picture and see the good with the bad.

I can appeal the decision and plead my case to try and get nursing care back, but honestly I don't know if I have it in me right now to file all sorts of paperwork and drive two hours for a hearing. It seems as though our chances are slim. I have not decided what to do yet. Perhaps I never should have been granted that privilege in the first place, but I am a better mom now because of that caseworker's decision to help me out. I have ten days to decide and respond in writing about an appeal. In the meantime, I have to deal with what is happening right now, and what this change means. It means that I have to take Lilli with me wherever I go, which is no small deal. But it will be OK.

I have to carefully calculate our outings. Any small trip outside the home has the potential to become complicated and stressful with Lilli. We cannot take Lilli some places because of triggers that set off her seizures. We cannot go out at mealtimes or for too long because of Lilli's endurance level. Sometimes Lilli cuts the trip short by wailing loudly. But sometimes, it's just as challenging to take my two year old out in public. I am way too stressed out about things that might or might not happen. I have been wearing myself down into an over-emotional, exhausted pessimist. Each outing by itself is no big deal. But after a whole week of having anxious outings, I was kind of an emotionally threadbare mess. I want to try and see the positives in all of this.

I think my anxiety of going places is real, and has roots that stem back to when Lilli was a toddler. Most outings were incredibly stressful with baby Lilli. I was a new mom, she was my first baby, and she had special needs. Nothing was easy. I was incredibly paranoid because of her seizures, choking, medicine doses, irritability, and other factors. I was also chronically sleep deprived for many years. Now I guess I'm not "chronically" sleep deprived. Just regular sleep deprived. My personal definition difference is based on the number of times I am awakened at night and for how long each time.

Now that Lilli is older, the factors have changed. But going out in public is still very stressful for me. To an outsider, it may seem like no big deal. But to an outsider, each outing is a separate thing. I'll try to act like I'm a different person and look at my situation objectively.

…So Lilli cried the entire time we were in the grocery store, so what? Lots of kids do that. Think of all the moms who have toddlers screaming and losing their minds in the checkout line next to the candy display.
… So Lilli cried most of the time that we were in the dollar store, so what? We were only in there for twenty minutes. Big deal.
…So Lilli sobbed at the library and Morgan had to whisk her out, and I could hear her wailing out in the hallway while I tried to hurry Chloe up to check out her movies…no big deal. (Ok, no, that was disruptive and stressful.)
...So I could not take Lilli and Josh to the playground while Chloe was in dance class because there were so many kids I was worried I could not keep track of both of them, not a big deal, right? Lilli would just walk away into the road and never look back. Josh would run to the edge of the soccer field in to the woods and never look back. No playground for us. (I took them for a short walk instead, and Lilli cried.)
…So I had to drive a half hour through pouring rain and traffic to speech therapy, and when we got there I had to keep Lilli from repeatedly touching a stranger's face and keep Josh occupied while we waited for 15 minutes for the therapist, it wasn't the end of the world. She didn't cry for very long.

The thing is, all of those things happened just last week. That was a typical week. Almost every time we all went somewhere, even when I had Morgan's help, Lilli cried and made our trips stressful and short. At the grocery store, we never made it to the dairy section. Halfway through the frozen section, I said "Ok let's go." She was so upset that it was making me upset, so we left without milk and eggs. Then when we got home I stressed about when I would go back and get the milk and eggs.

Having a nurse meant I got my grocery shopping done without interrupting Lilli's ABA therapy at home, and I could focus on two children while two other people were focusing on Lilli. Lilli was not there, crying and anxious the entire time. I have thought about this, and wondered why I get so anxious when I am out with Lilli. I asked myself if I was embarrassed of her. Really and truly, I am not embarrassed by my daughter. I am not ashamed of who she is. I am proud of her and I adore her. But when Lilli is anxious and upset, I get anxious and upset. An ordinary errand turns into a "hurry up and get this done and let's get out of here." This is really typical when you have a two year old. I went through it with Chloe, and now we are done with it. I'm going through it with Josh right now, and I know it will pass soon. But it has always been like this with Lilli. As she gets older and taller and stronger, it makes me even more anxious.

She has gotten better at outings. As long as I have another adult with me and a bag of cheesepuffs, we can make it for a little while. We try to prepare her mentally for the errand. We avoid certain loud, overwhelming stores. I make a list before we go, and we make a "game plan." We get in and try to get out as fast as possible. Once on a trip to Target, Morgan told me I should be on Youtube. I had all three kids in one of those kid carts with two booster seats. I literally ran while pushing the cart up and down each aisle, whisking things off the shelves. I barely slowed down to grab stuff. It was drive-by shopping. I almost ran a woman over and had to apologize profusely. When I write stuff like this down, I realize I must have lost more marbles than I thought over the years. I prefer to call it "Preventative Parenting." Like I am getting my shopping done quickly before someone has a total meltdown. It makes it sound so much better than "Paranoid, Sleep-Deprived Anxious Shopper Mom Hyped-up on Caffeine and Dangerously Running with a Cart Filled with Three Kids."

So I lost nursing care, no big deal. I still have Morgan, Lilli's ABA therapist. And she's better than ten nurses. Any parent in my situation would do back flips to have any help at all, so how can I complain?

The positives about not having a nurse:
I won't spend as much money.
My kids won't get to see things they want at Target and whine about wanting them (because they will only be seeing a blur as we zip past).
I might be able to call running with a cart filled with three kids and groceries "exercise."
There's no time for me to look at frivolous house d├ęcor and waste mental space thinking about the pointless possibility of "window treatments" and useless bowls filled with silly decorative balls.
We will never go to Toys R Us because Lilli hates it – too overstimulating (not going there is a definite positive in so many ways.)
I will be forced to plan meals ahead of time and write specific grocery lists (a money and time-saver in the long run.)
I can't think of a positive about not going to the public library. But my library is so awesome, they actually have a drive-through window. I can reserve books online, drive over there, and a nice lady slides open a window and hands them to me with a smile. (She might be smiling because we are not actually coming inside the building to disrupt the peace, but whatever.)
And the biggest potential positive? I will gain wisdom. I will depend on God and not myself. Because I simply cannot do it all. I will be constantly reminded that everything I have in life is from the sheer grace of God. I will be more thankful for every blessing, for any small help and any moment of peace I am granted. It is true, having less makes you more thankful for what you have. That is true with material things, but it is also true of time, and help from others. When things change in life, a person can either be bitter about it, or gain wisdom. I am no Pollyanna, believe me. But I will not choose to be bitter. I will be thankful for what I have. As for my anxiety level, I know I need breaks. This is a break right now. I am thankful I can write. I can start my day feeling good from getting all of that out. Thanks for letting me share.

 


 


 

Tuesday, April 10, 2012

Unraveling Lilli’s Typing Mystery with Carly’s Book


I have been trying to figure out a way to explain what has been happening for over a month.

I just cannot explain it. If I try to write about it all, I would not write. I did try, but the unpublished post was endless, and I'm not even sure it was accurate. That's why I have not been able to post for so many weeks. It's too much, it's too overwhelming and confusing. Only a few select people know exactly what has been happening in the last month with Lilli. We have not completely solved any mysteries yet. All I can do is keep telling myself that this is just one more part of Lilli's story. And it is not the end of the story. We just have to give it time, to wait and see how things turn out.

Last week I checked out the copy of the book "Carly's Voice; Breaking Through Autism." This is the very same Carly that I saw typing in a YouTube clip last May, and it inspired me to try to teach Lilli to type. Oh Carly, you have no idea how much influence you have on this one mom. The book is absolutely amazing to me, because it is telling me part of our story. It begins when Carly was born and chronicles her childhood up through the point where she begins to type, to what she is doing now. The similarities between Carly and Lilli astound me, and the things Carly does and says through her typing reveal things to me about Lilli.

I have been so moved and inspired that tears have welled up during several parts.

"Carly's Voice" is written mostly by Carly's dad, Arthur Fleischmann. In the first few pages, I honestly thought I might not enjoy reading about someone else's life raising a child with autism. It hits too close to home. All the description about being up for hours every night with a child who does not sleep through the night. The toilet training that drags on for years until past age ten. The spoken words that would appear and disappear after several months. The difficulties in trying to maintain or even have at all a normal social life, marriage, family time. Fighting to get services for a child who desperately needs them. The list is really endless. And I identified with all of it. I don't even feel like writing about it. Because I live it. I pressed on through the painfully familiar first few chapters as he described the endless trips to specialists, reams of paperwork and constant stress and sleep deprivation. I kept anticipating the part where Carly begins to type. When I finally reached that part, I was overwhelmed with emotion. How unbelievably similar our experiences have been, even with communication and typing.

This is where I explain that though Lilli's typing has sent me soaring on hope, it is also filled with mysteries. Part of my deep discouragement this past month was about Lilli's typing. I have been depressed about it. There is a lot more to the story than I can go into. I kept wondering where I went wrong, what happened. Lilli's typing changed, and slowed to a crawl. I read about Carly's beginning and cried because it gives me hope. We have hit a rough patch, but we will get through it. Lilli is still typing with her teacher and therapist. With me, her typing is sporadic and ranges from wonderful to maddening. With Jasen, it's been sparse and difficult. I mourn because I feel like I have lost that feeling of freedom to know what Lilli wants to tell me, anytime and all the time. I had a dreamy few weeks where Lilli and I sat and typed for long stretches of time. I felt more connected to her than I ever felt. When she looked in my eyes, we exchanged knowing looks and I really knew for the first time ever that she knew I knew what she was thinking. There are no words to describe how precious that was to me, after eight years of not knowing.

But then something happened. The typing slowed to almost a stop. Some days I do not type with her at all. We have had many days when I have no idea what she is thinking whatsoever. On those days I am deeply depressed because I feel like the door to our communication and relationship as mommy and daughter has been slammed shut, and the figurative silence is deafening.

I have been reading "Carly's Voice" with hunger for answers. And I feel so much better reading about someone else's rocky, mysterious experience with teaching a child with autism to type. I learned that Carly did not even type at all with her parents at first. Only her therapists. She was eleven when she began to type on her own. Lilli is only eight. Oddly, that comforts me. Almost like, we have time. We don't have to rush this. She will type on her own. Like Lilli, Carly would not type when they tried to videotape her doing it. There was a long period of time when her parents did not see Carly type and had to just believe the therapists and what they said was happening. They later learned that Carly had OCD, and would only type when the circumstances were "just right." This sounds familiar.

There are some things that Lilli has in common with Carly that are shocking confirmations to what we've been wondering about. Carly explains how she can read an entire page of text with one quick glance. She can hear soft conversations from several rooms away, even while she is making noises and watching tv. It sounds like science fiction. But when I read it, I laughed with odd relief. Lilli has these abilities too. One big difference between Carly and Lilli's stories is that Carly never stopped moving and tore the house apart. Lilli is not like that. She gets into things and makes messes, but she sits and plays with Elmo or her ipad. She still has her meltdowns, though. But it seems that Lilli's meltdowns are different than Carly's. Every kid with autism is unique. The saying in the autism circles is "If you've seen one child with autism, you've seen one child with autism." Because they are all different, which is why we have the term "autism spectrum."

I have not even finished the book yet, and already it has renewed my hope. Lilli's story will be Lilli's alone, and I know she will not be exactly like Carly, or any other kid. But it was the encouragement I needed, to know that we are doing the right thing and we just need to keep on trudging up this mountain. I have said before this is a long road, with little direction. I feel like we are making this up as we go along. The light at the end of the tunnel may be very far away, but at least it is there. Whenever I can't see the light at the end of the tunnel, I have to remind myself that we went into this with blind faith to begin with. Last year when we started to teach Lilli to type the word "go," we never dreamed that Lilli would make such incredible progress in one year's time.

It helps me get inspired for the journey ahead when I look back to see how far we have already come. 




Links about Carly:
http://www.facebook.com/carlysvoice 
http://www.amazon.com/Carlys-Voice-Breaking-Through-Autism/dp/1439194149