Autism recovered?

Medical experts say it's not possible to recover autism. We have living proof in the form of three children, that it IS possible. In my blog you will find recovery stories, along with information regarding health that I have learned over the years. And sometimes just snippets of life to give hope that yes, life can be normal after the hard work is done.

Sit back, enjoy, and be hopeful! RECOVERY HAPPENS!

**Kids names have been changed to protect the innocent and naughty alike. ;)

Friday, August 27, 2010

Some cute pictures from the school week

Tony hard at work. His schedule is actually too big for his whiteboard but he likes to keep his schedule attached to it so it works. He has about an hour of work on his own each day. The rest is done with me. Grace working on her picture of Vivaldi for our Classical Composers study while listening to his music. We make folder books about each time periods most famous composers. We're learning about the Baroque period right now.

Kate has daily boxes of activities. She only gets to do the lace up toys and geometry shapes one day a week. Each day has different activities. This gives her something educational to do on her own while I work with the big kids.

Tony's school area

Ok, here it is. Yes, he organized this himself and keeps it maintained. He likes orderly bookshelves. :)
This is the neatest room in the house. Except for when he gets his legoblock men out, then it's just craziness.

Tony's recovery

Tony was fairly typical as a baby. His only health problems were chronic bowel problems, chronic ear infections, eczema, asthma and environmental & food allergies. Looking at that sentence now, I just want to scream as those are all problems with the immune system but back then, I knew no better. Each of those problems were dismissed by his doctors as normal.

He also had torticollis which made him only able to turn his head one direction and affected his ability to walk. He was in OT from 9 months to 1 year to help him learn to move his body well enough to walk. He actually had great movement but his spine was messed up from the twisted neck and walking was a struggle at a certain point. I really never thought it was bad myself but our base doctor was insistent that he needed therapy and we complied. We had a very nice Major who worked with Tony every week and gave me home therapy exercises until he "graduated". It was actually a good experience for Tony & I.

About the time he graduated, his food allergies were so severe that I had to quit my job to keep him home. I was secretly glad to have a reason to bring him home as I never wanted to return to work after he was born; but it was difficult to know the reason I came home was because he was no longer safe in public settings. I remember very distinctly the day I knew it was too dangerous. He went to the military daycare (which is where I worked) and you need to know that DOD childcare is flawless in their ability to keep germs and food and all things safe. The room was practically sterilized twice a day and kids foods were kept away from each others, toys that were played with were not reused until being cleaned, I mean it was as safe as they could be. BUT that day, I was visiting him on my lunch break and he was eating some baby food, but his neighbor in the next highchair over had macaroni & cheese. Tony, being a toddler, did what toddlers do. He grabbed his neighbors mac & cheese. He didn't even get any in his mouth before I had grabbed his hand and washed him off. But he went into anaphylactic shock (this happened often so I knew what was going on). Just from touching the mac & cheese. That's when we realized why he kept going into anaphylactic shock randomly...he was allergic to touching his allergens! The director of the childcare center told me she really didn't see how to keep him safe (and I didn't either) and that I should put him in a bubble. (That was a less than stellar comment on her part, I might add) So I quit and took Tony home.

I remember that first day home. We lived on base and walked to work every day so I just took him home in the stroller and we hung out on the playground next to our housing unit. The day was sunny & cool; a beautiful Texas day. We finally ended up swinging and I was holding him in my lap, face to me. He feel asleep and I just sat there swinging and holding him and thinking how wonderful life would be now that I could stay home with my baby.

Life was wonderful for awhile. We had another baby soon after and Tony was a great big brother. He just loved Grace and thought she was the coolest play toy ever. They had a special bond that was so precious to see. She very quickly showed signs of severe food allergies too but she also very quickly regressed into autism so she was a danger to herself because she could not care for herself or speak up to say "no thank you" when offered food. She was not out of my sight often but she did go to church nursery and she couldn't remember not to accept food from others. So Tony, very responsible at that age and being an A type little dude, took responsibility for her. If Grace went to nursery, so did Tony. Very quickly Tony became Grace's mouthpiece and protector. He saw her have to get an epipen injection many times and he understood the seriousness of his self-appointed job.

As they grew, Tony & Grace maintained that bond and always had each other for playmates. At that age, Tony was very social but Grace was not at all. At activities, kids would look at their food and make faces. Well meaning adults would raise their eyebrows at their food and make comments. But mostly people understood it was life and death and the amount of food allergies they had necessitated the "weird" foods. We got very good at wiping down surfaces to EVERYTHING the kids would touch. We should have taken out stock in the Huggies wipe company because, Baby we would be millionaires!! But anyway, we still strove to "look" normalish so we started allowing the kids to live off of Tyson chicken nuggets, oreos and spiderman pop tarts.

However not everyone understood (or cared) that it was life and death. At one point I had to pull Tony out of church nursery because the nursery workers would keep him caged up in a playpen while the other kids decorated the room in cheez-its. I mean literally covered the room. We would go in to pick him up and every child was orange crumbs and the floor was orange. Well a social toddler in a playpen is a great attraction to others so the little people would always come over to play with Tony, touching him, touching his toys, and we would spend the afternoon in the ER, hoping he wouldn't die.

This was his life for years. Any social situation brought danger. While we did leave that horrible church, we still had to deal with the fact that each exposure he had there, had upset his immune system even further. The amount of foods he became allergic to was astronomical. His immune system was on hyper alert every second of the day. If you know biology, you know that stresses out the adrenals big time. Although life saving and necessary, epinephrine shots also stress the adrenals. His body started crashing little by little and by the time he was four, he was hospitalized for complications from strep throat. When he was released, he was a different boy.

Tony never lost language. I say that because his symptoms will make you wonder how I didn't see autism any sooner. Or even how the doctors didn't see it. I firmly believe it was because he could still talk. He was always the little conversationalist and when a doctor sees your child for 2 minutes and all they can talk about is dinosaurs, it doesn't set off alarm bells. His obsessions were obvious to us but not so obvious to the people that didn't live with us. He could still socialize to some degree but he went from "normal" play to screaming and crazy hyper. He started sweating buckets at night. I'm talking, his sheets were drenched and his clothes were dripping wet when he got up. He was not in a hot room, not wearing hot clothes, this was just the way it became for him. He started snoring and his food allergies, perservations, obsessions and wildness got more pronounced. While he withdrew further and further into himself, it was very subtle, and we ignored a lot of the signs because he continued to play with Grace.

Their playing had changed though. Instead of flitting from toy to toy, doing normal kid things, they would sit on the couch and obsessively watch Blue's Clue's (I can still hear Steve & Blue singing in my head!), or play for hours with dinosaurs (nothing wrong with that) and little by little, they stopped interacting with me. Daddy was overseas probably 1/2 of the year so it wasn't easy for him to spot things and I was super stressed over the allergy situation and, well honestly I was rather self absorbed so I missed signs too. Because the allergies were so severe, our social life dwindled down ALOT and I stopped seeing other kids Tony's age and couldn't compare and see the oddities. At the age where it probably would be have started to "click" for me, the military moved us and I had to make all new friends.

Let me tell you, when you have kids with allergies to TOUCHING common things, making friends doesn't happen easily. For us to go out in public used to take an enormous amount of courage. Imagine that anything your child touches could kill them. And imagine that it's stuff you can't see that would do the most damage. Finding a new church was a difficult and daunting task. So Daddy and I decided I would go by myself first and we would see how the people of the church were. If they had a heart for special needs, I would speak to the nursery workers to see what they were willing to do to keep the kids safe. If they were put out or snotty in any way, we did not go back to that church. We went through quite a few churches I'm sad to say. But we did occasionally find a church where they were willing to work with us and we eventually found a place to worship.

Once we found a church home, it took some time to accustom people to our needs. We can't help our issues so we just asked people to make small accommodations for the kids safety. Most did of course but it still took Daddy & I some time to work up our courage to trust people. It took even longer for me to work up my courage to let my kids play with other kids. Always in the back of my mind is the knowledge that if a child Tony is playing with just had milk and donuts before playtime, it could kill Tony. I know very few kids who are neat eaters and therefore most of the little kids around us have food of some sort on their clothing. A simple thing like sharing a toy that had been in someone else mouth or on their table during meal time could kill my children. Those are the crazy things I have to think about every second we're in public. At that time, I was still timid and often didn't want to speak up so I just avoided social situations as much as possible.

Fortunately I made some friends who helped me get over that but still, for a time, we were very isolated socially.

By the time I started being more free and comfortable in the groups who knew our needs, I started to notice some really weird things about Tony. He was afraid ALOT. Yes, a child who can die from touching things would naturally have a more fearful personality. But he had not been that way before and he was Grace's caretaker! He had known for years about these issues but suddenly he was afraid to talk to people. He started being unable to talk (selective mutism) in public. He was also terribly underweight compared to all his age mates. He did not know how to be social with either adults or children. He was just wild and crazy unless he was frozen in fear. And he stayed that way because I didn't know what to do.

Finally a friend recognized that my newborn (Kate) reacted badly to foods that fed yeast. She herself had candidasis and encouraged me to see her doctor. I went out of desperation. At this point, Tony was 5 and I had been assured by all the experts that he would outgrow his allergies by then. Not only had he not outgrown them, he had more than when he was 2. Since Kate and Grace both had allergies, I went hoping he would tell me something that would help. I received alot of information that day and started tweaking my own diet. That was no fun but was necessary because I was breastfeeding the baby. Her eczema went away when I cut out all things that feed yeast (dairy, gluten, sugar, yeast). So I started messing with the big kids diets to see what would happen. I kept a journal of everyones food intake and behavior. VERY quickly, the connection to their food and their behavior became crystal clear.

I kept going back to this doctor who thought in a whole new way from the ones I knew. During one appointment, he did diagnose Tony with autism. I remember being stunned and relieved all at one time because I had already known he had it and the verification helped, but you're not really ready for that dx when it hits your ears and heart. I also remember his nutritional health coach looking me in the eye after he left the room and saying: "It doesn't have to be permanent". WHAT??? Autism can't possibly be fixed right?? Well that comment lite a fire under me. I had already started learning a little about toxicity from studying candidasis so I started collecting books and websites that could help me. During that time, I took Tony to the big medical university here where all the autism kids go. They used the CARS and when we came back for our evaluation, they told me he missed a diagnosis by 3 points. They also knew that at this point, I had tweaked his diet and seen improvements, so they told me to keep doing what I was doing because based on his history before treatments, he did indeed have aspergers (although at that point they just called it high functioning autism).

So what did I see with dietary intervention?? Well here's a quick rundown:

Gluten removal - quit that horrible screaming and screeching, stopped wetting the bed, his excessive night sweating stopped (this sweating was so severe that his clothes were dripping from sweat when he woke up), his asthma went away completely!
Sugar removal - eye contact came back, stimming stopped, he calmed down considerably.
Adding fermented (probiotic) foods - bowel problems resolved, stopped craving certain foods, major social gains, eczema went away.

We did a ton of other interventions as well. Diet was just the beginning.

Chiropractic care - we did this 2x a week during chelation to keep the detoxification pathways open. We continue to receive adjustments to maintain health. This is one thing I think everyone needs to do on a regular basis.

Oral chelation - we had testing done and it showed high levels of toxic metals in everyone's body and chelation is the best way of getting it out. Metal toxicity will keep the brain & immune system from functioning. (Most people are aware of the danger lead poisoning can do to the brain - all toxic metals will do that). We did NOT do this until we had worked on their guts though as chelation can be very hard on the body and often stirs up yeast in a fierce way. We had a doctor oversee our chelation and we supplemented heavily in those days to make sure we did not deplete the body of needed minerals and nutrients. We went very slowly and used the safest method we could find.

Occupational Therapy - this was needed to help the kids regain their lost skills. Tony, for instance, had motor and trunk rotation problems. He could not look back without turning his whole body. A child of 6 should have been able to rotate his trunk but he could not. That was only one of his many physical problems that were remediated by OT. His sensory seeking needs were met here and we learned how to help him meet his sensory needs. At one point, he would only go out in public in long sleeves and could not touch dirt without great distress. He is SO over that! :)

Supplementation - during the early years of recovery, we ran a huge amount of labs. We saw many problems the kids had internally that we could resolve with vitamin & nutritional supplements. As you can imagine, a child on a severely restricted diet like Tony's had many nutritional deficiencies. (*Hint: processed foods hurt the body, they don't do it any good!) We found he had a parasite in his gut that was eating all his nutrition (at 9 years old he was 45 lbs) so we killed that sucker and he started gaining weight again.

Neurofeedback - this was absolutely vital for Tony. Although he was physically recovered from all the other interventions, he still had that heart-stopping anxiety. He was just unable to function out in public if someone spoke to him. After just three sessions of this, he lost that anxiety. It's wonderful to see him able to function appropriately in public!! He has learned the difference between necessary caution and all-out terror. It's good. :)

It took about a year for him to look recovered to the untrained eye (who didn't see him for a very long period of time) and much longer to get complete recovery (meaning no one could tell he used to have autism even after interacting with him for a lengthy time). This is not a typical timeframe for a more severely affected child. Please also know that recovery means they do not look or act like they have autism. It does not mean they have no more medical issues. He has only recently been able to pick up social cues from others and the food allergies persist.

There is so much more that I didn't include but I'm sure you're all going cross-eyed from the information overload. So there is Tony's story... in a very large nutshell.

Autism Recovery

Since I first started this blog, I have wondered how best to approach our recovery stories. As I mentioned elsewhere, I don't like to revisit the old days. They hurt. But I have always believed that our recovery was not just for us, it is for others as well. So selfishness is not an option and I am happy that our story has helped others find recovery and know it will continue to do so.

It may sound weird but it's actually difficult to condense and share because it was a very long & complicated process that led to recovery; AND there are three children involved not just one. When you're going through something, you just journal as you go and your perspective is different; but we're done and it's a bit harder to remember everything (believe it or not you do forget some of the awful stuff) and hindsight is so different than "now sight". So I will just split it all up as best I can by child. I'll try to use tags and keep them consistent so you can search easier. I will probably copy parts of my conference notes right in here so if you've heard me speak at conferences, some of this will be familiar to you.

I appreciate your patience as I get all this written out and also appreciate you keeping negative comments to yourself. Shockingly, there is a segment of the population that is offended by autism recovery. If you are one of those people, this blog is not for you. This is to share our story and help others, not to start debates of any kind.

Y'all hold one! It's gonna get wordy in here! lol :)

Tuesday, August 24, 2010

Our filing system for school this year

I am always on the look out for a way to streamline our homeschool. I floundered around quite a bit the first couple of years after Kate was born but last year went much more smoothly. Still things fizzled out by the end of the year and it was hard to maintain our stamina. But I think I may possibly have found our groove for this year, thanks to a monster thread on The Well-Trained Mind forum I frequent. That thread was not only possibly the longest thread in the history of long threads, but it was very informative with parents sharing their filing systems and what works (and didn't) for them.

Grace is easily frustrated with things that are not laid out in an accessible fashion. I tend toward laziness and do better with an organized plan. So the filing system seems perfect for us. I especially love the idea of a LOT of work at the beginning, but then being done with all planning for the rest of the year! I bought all the supplies and spent two weeks tearing apart workbooks, copying pages and organizing Grace's year. It started out like this:

I actually got trapped in there the first night I worked on it. I just sat in the middle yanking out pages and made a circle of stuff around myself. When I got up, I had no way out except to move stuff... which was not fun b/c it was an organized mess.

But then it got a little better:

And ended up like this:

Now isn't that a thing of beauty??? Although many people don't recommend labeling your files with dates, I felt it would help me stay on task if there was a date there rather than "Week 1". It's just too easy for me to say "Oh well, Week 12 can be NEXT week" and I can totally see myself at the end of the year with still 10 weeks to go.

Grace loves her new filing system as well because all she has to do is grab the folder closest to the front of that week, do all the papers in there, and the rest of her schoolwork is Mommy-led. There is a great sense of accomplishment when her file is empty. It also motivates her to read her own instructions on the papers because it's self-led and to ask me for help means it's Mommy-led. I am of course, available for help; and do give it to her if she asks, but it helps her (and me!) to have a "do it myself" section. ;)
When she is done and I have reviewed her papers with her, she puts them here:

Each color is labeled with "Tony's Math" or "Grace's handwriting" etc so it's easy for me to keep their completed work straight. Now the plan is for me to go through those once a month and keep a sample and toss the rest. We haven't schooled for a month yet so I don't know how I'll do with keeping up with that but we'll see. Most likely, when they get so cram packed full of papers that nothing else will fit and my desk becomes the overflow, I will go through and toss stuff. :D

Tony was going to have a filing system but as I started pulling books apart I realized he didn't have alot of "tear apart" books. PLUS he is a super organized little dude who really doesn't need anything more than a bookshelf , bookmark and a list of work for the week. So when I remember I will go take a picture of his school area but it's in his room and he's sleeping so that will have to wait for another day.
Oh wait! I found this picture I took on first day. You can't see his organized area well but you can see him studiously working at his desk. I'll take the picture of the completed area tomorrow when he's awake. He tweaked it a bit from this picture. Isn't he just cute??

One last thing before I go. I MUST show off my beautiful new desk! Yes indeed, I have a desk. No more stacking papers on the floor or in giant piles on that tiny desk I had. Nope, I have a wonderful desk that I will love and cherish for the room and space it provides (thank you to Office Depot for the crazy awesome sale!). AND now I have a place to put my school tools that is off limits to the kids. I am going to really appreciate being able to find my tape and pencils when I need them.

And there you have it. A long rambly explanation of our system. :)
(Disclaimer: No children or husbands were harmed in the making of this file system. They were fed and loved as I came out often from the pile of milk crates, papers and books to feed them.)

Tuesday, August 17, 2010

Grace's post-test results with Learning RX

I am blown away!!! I received her results today and in the words of her test administrator, "She rocked that thing!"

Here's a breakdown for anyone interested... probably my mom at least. :D I will post it with the age she tested IN at first, then the age she tested OUT at. The program lasted about 8 months. She will be 9 years old in a few weeks.

Long term memory
9 yr old
10.7 yr old

Retrieval Fluency
7.7 yr old
12.6 yr old

Short-term memory
6.5 yr old
8.2 yr old

Auditory Work Memory
6.3 yr old
13 yr old

Working memory
6.4 yr old
10.3 yr old

Visual processing
13 yr old
13 yr old

Logic and reasoning
6.4 yr old
13.1 yr old

Executive processing speed
6.8 yr old
9 yr old

Processing speed
6.5 yr old
8.3 yr old

Word Attack
7.6 yr old
15.4 yr old

Reading fluency
6 yr old
7.7 yr old

Auditory processing
8.7 yr old
17 yr old!!!!!

Spelling of sounds
7.7 yr old
10.6 yr old

Math fluency
6.3 yr old
8.3 yr old

As you can see, she really did rock Learning RX! The change in her is astonishing; truly! She progessed in every area and most importantly now has reasoning and processing skills far beyond her years. As the guy said today, if you have those two skills, you can go far in life. We also still have all the "stuff" that comes with the program and will continue using it, just to a less intense degree. Reading fluency just needs practice but with word attack skills like that, it's just a matter of time.

From auditory processing disorder to processing skills of a 17 year old... how incredible is that??? This program is absolutely perfect for anyone with learning disabilities but is astonishing for APD.

Those of you who know her or have heard me talk of this, know the intense frustration she has experienced at being unable to learn. This program gave her every tool she needs and was worth every single penny (and it was ALOT of pennies).

I think she can start teaching homeschool now. I'll just sit back and watch. lol

Monday, August 16, 2010

Back to school

I wasn't quite sure if I wanted to start school today because my schedule was still not just right (AND I accidentally labeled Grace's file system starting with next weeks date). However, the kids woke up crazy early, brushed teeth & hair, made beds (and even made mine while I was in the shower!) and did chores without being asked...all while I was getting breakfast ready. They did all that because they were soooo excited that school was starting. How can you not love that??? So, we did school.

We started off with a smiley breakfast
Then we went outside for first day pictures. It took a few shots before everyone cooperated.
Take one:
Kate was NOT going to smile because she had flip flops on and the grass was touching her toes. VERY unacceptable to her!

Take two:

There's always one clown in a class and Tony is happy to fill that role.

And take three:

Ah... perfection!

Then we went in the house and looked at all our new books. Kate immediately dragged out Grace's Learning RX since that is what she will be doing this year (among other things). Grace & Tony went to their respective areas and started working although Grace is mostly teacher led still so she didn't do much. Tony however is quite independent in his school work so we didn't see him for awhile except for an occasional question.

Kate and I finished Learning RX and Grace and I started working on her things. It was rather chaotic but she has learned to block out the chaos so she did fine. Kate is supposed to be playing with special toys that only come out one day a week but that was just not her thing today; she wanted to be in our business. lol

Once we all got done with the big subjects, it was lunch time. Daddy was ready to take me shopping for my new school desk so we snatched him away from the base and took off to the store. Fun time there, I love my new desk which will be delivered later this week. We also bought Grace a chair for her desk. She has the most adorable desk ever (I'll take pictures later this week) but has always had trouble finding a chair that put her high enough to write on it. Today we found it - in PINK! What more could a girly-girl ask for??

After dropping Daddy back off at work, we came home and wrote up our first day papers. This is just a paper where they write their names, height/weight, favorite color, favorite movie, favorite food, etc. Then I put their individual first day school picture on it and file it away. The highlight of that whole paper is they get to write what they want to be when they grow up. Tony wants to be a published author (big time published, not self published like he did before), Grace wants to be a missionary and Kate wants to be Spidergirl. Cool, those are do-able. :)

We finished the night off with dinner and Daddy reading Mrs. Piggle-Wiggle to the kids. So although it did not go as planned, the day was perfect.

Tuesday, August 10, 2010

Who wins?

With school starting back up all over the US, the topic of peanut allergy comes up alot. It's everywhere and it's often deadly. Schools often have to make concessions and keep a school peanut free. Completely peanut free. Now as a mom with three children who are anaphylactic to touching dairy, I applaud any school that takes steps to protect children with this issue. But as someone pointed out the other day, what about the kids who are so poor that PB&J is the only lunch their parents can send???

One of the reasons we originally started homeschooling was because of the extremity of the food allergies in the kids. The kids could not be kept safe in school. I knew this because the military daycare I used to work at was SUPER crazy clean and strict in their safety measures, yet even there, under my very nose, Tony was constantly going into anaphylactic shock. Overloaded classrooms with overworked teachers cannot be expected to do better.

A friend who runs a local private school let my kids attend for two weeks during some very extreme illness on my part a few years ago, while Daddy was overseas. While the school did splendidly and my children enjoyed their time there, I also saw the difficulty it caused the teachers. The constant hand washing, surface washing and vigilance required to keep my kids safe was taxing for them. But we were only part time students with no expectations that everyone change policy for us. And the staff and students saw it as a ministry to help a struggling mom and were happy to sacrifice for a time. God bless them for bringing a stressed out mommy some peace!

We are very blessed because Daddy can support us on his paycheck alone. While I do work, it's very part time and my check pays for homeschool supplies, not daily living. AND Daddy takes off work when I travel so he can watch the kids without looking to the school system for help. So we are not part of the equation. But I couldn't help but think about all this. I was shocked beyond words the other day when a mom railed at me about how poor children with PB&J lunches should not have to suffer for my childs allergies.

But what if I couldn't stay home? What if I had to go to work and make a school system change their rules for our survival? (Not convenience mind you, but SURVIVAL) But then, what about the parents who can afford nothing but PB&J for their child for lunch? What about that child?? Who should sacrifice? The parents of the child who can't survive in a peanut atmosphere? Or the parents of the child who can't afford anything more costly than PB? Does the parent who uses PB&J every day just need more education on other affordable alternatives? Are there more affordable alternatives to a cheap jar of PB?? I mean there really are people who work themselves to peices and still can only afford the cheapest of food options. Does the parent of the peanut allergic child just need to find another schooling option? What option? Homeschooling is great but not an option for a single mom who works 50 hours a week with no child support to help pay bills. Sometimes not even an option for married people who both work full time and are squeaking out a living trying to pay regular bills plus a small fortune in groceries because their childs health demands it. So what is that parent to do with their child?

And if there are other cheap food options, why don't people know about it? Why do they think PB&J is all there is? Why can't someone whose child lives off PB&J (because it's all they can afford) get financial assistance so they can afford real food? How can a school system charge that parent for that childs lunch, knowing full well they can't pay for it? How can a parent send their child to school with nothing to eat and hope they find someone willing to share a little something? How does a parent send their child to school hungry, knowing they're going to be that way all day because of another child.

My mommy heart say the child who is anaphylactic to food should be catered too. Of course I think that, it's life and death for goodness sake. And I live it --- my view is decidedly skewed. But I don't want a child to go hungry every day because her parents can't afford anything more than PB&J. Really I don't. I don't think I could stand knowing my child caused another child to go hungry day after day. And while that child wouldn't die from missing one meal a day, she sure wouldn't thrive or be able to focus and do her work in school while her little belly rumbles away.

Sheesh, it's just not right, no matter how you look at it.

One time, very long ago, my boss (x-boss) told me I just needed to put Tony in a bubble. She thought that was funny and didn't intend to be offensive and insensitive, but she was. It hurts every time people act like my children should just get out of the way and let life carry on for everyone else. My kids want to be part of the fun too!! But on the other hand, I don't expect people to stop eating around my kids ALL the time; just sometimes. Just often enough so that they get to do kid things and be around other kids without fear of touching someone while playing. Some people are willing to make that sacrifice but most are not. Kids tend to be much more tolerant of this situation than adults. We often find the children of our friends being more concientious of our needs because they don't want to hurt their friends. And I thank GOD we do not have to deal with an unsafe school situation. I do not know how parents of these severely allergic children do it!

I am very grateful for our church. They make special concessions for us. If we want to participate in a certain kids activity, we let them know and they (often times) save us a special table marked with "don't put food here", they hand out wipes or give instructions for others to wash hands because of our allergies. Daddy & I stand around like hawks with our epipens attached to our pants, ready at a seconds notice. Kids come up and ask if they can play with our kids, we remind them to wash up and then play. And sometimes we just sit certain activities out because it's really not possible to be safe -- like at an ice cream social. But MOST places are not like this. People with touch or inhalation allergies are left out because others cannot socialize without food in their hands.

The whole situation makes me sad and angry. Children all over the place are ill. Chronically ill. And there is not enough education or financial help to rectify the situation. We pay a fortune for our radical allergy treatments --- and we're getting a discount! Parents who work themselves to death and have no money for good food are not given options; are not given access to cheap healthy foods... because healthy food isn't cheap.

Many parents have told me that they would absolutely send their children to school peanut free if there was a deadly allergy. I love these parents! God bless their thoughtfullness and understanding. But still, I can't get that picture out of my head. The picture of a little girl hungry with nothing in her lunchbox, no money for school lunch, and a mom with a broken heart.

Saturday, August 7, 2010

Reading nook

Grace has recently learned to read. This is a HUGE deal in so many ways. She has struggled for years to just get the basics. She has wept, cried and pitched fits over it. She longes to read like Tony, the little bookworm. But she just couldn't do it. We used a few different programs that were supposed to help anyone learn to read but they were all geared toward the "left brain dominant" learner and she is "right brain dominant" so it just wasn't working for her. So this year we enrolled her in Learning RX and we spent 8 months getting past the roadblocks she had been unable to break through on her own. She worked her little rear off, doing read and think activities every day. And it all paid off, she is now able to read extremely well! She will post test next week and we fully anticipate she has gone beyond the 2nd grade reading level. Considering she started the program at a kindergarten level, that's awesome!!!!

I had in my mind from the very beginning that we needed to do something with this fabulous window seat in the girls room but didn't quite know what. I found these adorable lace curtain panels for sale at a thrift shop for $5.00 and realized they were perfect for what I wanted. I dug out my old fake flowers from waaaay before kids and spent 30 minutes decorating her nook while she was watching a movie. This was the result.

She was ecstatic when she saw it! She just ooohed and aaahed over the beauty of it. She is in love with this spot that is all her own for her to cuddle up with books and read.

And we are so grateful for teachers and programs that can help us move forward. Books are so important to us and now Grace can join in the love of books. There will be no stopping her progress now. :)

Wednesday, August 4, 2010

I believe in fairies

Today we had sausage and cabbage for lunch. Tony & Grace love this meal, Kate loves the sausage. ;) I was on the phone during lunch and distracted. When I got off, I noticed she had eaten all the sausage but had a bowl full of cabbage. I reminded her to eat her food and that I would give her more sausage if she finished her cabbage (bribery is good). The following conversation transpired:

Kate: I can't eat my cabbage Mommy. The fairies are sleeping on it.
Me: I don't see them.
Kate: They're invisible.
Me: It's ok, they'll wake up and fly away when you touch it.
Kate: But mommy, they're TRAPPED there by bad people. They'll die if I eat them!
Me: Alright. *waves hands magically over food* I set them free. Now eat your food.

We're big fans of fairies here as you can see by the garden we keep for them.

Tony thinks Daddy & I used to be dragons (thanks to Bryan Davis). We're quite magical here but I'm not making a dragon garden.


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