Today is not about Braden, today is all about Linda Markell Barley.

Three years ago today, I had to do the hardest thing, ever, in my life...lay my mom to rest, 2 days before mother's day. In thinking of her, I wanted to share the memorial I gave at her funeral:

Over the last few days, I've been trying to think of things I could say about my mom or stories that I could share. What were my favorite memories and how could I put them into words? I was forcing myself to think of something and was encountering a mental block. Then I woke up Sunday morning, Mother's Day, and realized that I had a lot to share about my mom, in the way I knew her best, as my mother.

As a new mother myself, I've looked to my mom as my role model. I've asked myself many times, what made her so successful? Stories and memories flooded my brain. As I put words to paper, I found myself choosing nicknames to describe my mom  and the stories involved with each memory. Now, mom had a knack for picking names, which I'll talk a little more about in a minute, and so I guess I've inherited this trait. I just hope she won't be too mad about some of them...

The first memory Tara and I usually end up laughing about centers around mom's role as "The Intimidator." What? Intimidator? Mom was the disciplinarian and dad whole heartedly will give her credit in that department. And to be very honest, as I stand here, I am still a little intimidated calling her the Intimidator. She had a full arsenal of weapons at her disposal and depending on how many she used at one time described the degree of trouble you were in.
The first weapon was the Linda Stomp. You knew you had pushed it too far if you felt the floors shake and heard the thunderous roll of her feet. Tara and I have learned to perfect the Linda Stomp, having seen and heard it many times. We now use it in our own households and tease each other, 'Was that the Linda Stomp I just heard?'
Her next weapon...the wooden spoon. If this was used in combination with the Linda Stomp, oh boy, you were going to get it! It would usually begin with the stomp to the "junk" drawer. Somewhere in the drawer was the wooden spoon and mom would stir and lift and make all kinds of noise before she found it, buying you a few minutes to either begin crying and/or pleading or make a mad dash to try to hide. Funny, hiding never really worked out well for me.
And finally, there was the finger and the look. Even dad has had his fair share of being the target of these two weapons - can we say RV? Even the animals knew. There is no way I could ever do these two weapons justice. Mom just had a way of pointing her finger at you and looking at you that made you start to quiver and fall into line, hence..."The Intimidator."

The finger weapon actually had two purposes and this leads me into another favorite memory and my next nickname, "The Great Tickler." Mom loved to tickle, it didn't matter your age or how you were related to her. As a matter of fact, I just found out last night this even included some of the nurses at the clinic!
You took your legs and ribs at your own risk if you sat too close to her. She had a way with her fingers that seemed to find your weak spot and she took great joy in being able to tickle. One of our favorite pictures of her is with Tyler and Brynn on the front porch swing. Tyler and Brynn are trying desperately between giggles to pry mom's fingers off while mom's face is filled with glee at her successful tickle attack.

In the last three days, the three ring circus has landed in the Barley farmhouse in the form of three dogs. This made me think of another favorite memory and my next nickname..."Dr. Doolittle." Mom just wasn't a mother to Tara and me but she was one to all of the animals as well. All of the many animals we had through the years loved mom and fell at her feet, literally. The cats and dogs seemed to gravitate to her feet and there was many a time she would trip over them in her attempt to either get up from the couch or make dinner.
In the many years there has only ever been one exception to this and it came in the form of Buttons the goat. Buttons appeared one day in the back of dad's little pickup truck as a gag happy 40th birthday gift. Buttons didn't stay forever and there is some controversy over Mom and Buttons, with talk of a butting, mom getting wrapped around the goat's chain, and a possible broken bone. Buttons is just lucky he went to live at another farm and not somewhere else...
So, with that being the only exception, this devotion was maybe due in part to her uncanny ability to name them. Magic, Tara's horse, named so because like Magic he just appeared. I think that was one of the other times Dad got the look and finger. Tilly (short for Chantilly) and Lacey (Lace), our first cats, named so because they were sisters and somehow Chantilly Lace popped into her head.
Yes, they loved their Dr. Doolittle and she them. They would always remember her at Christmas. There was always a present from the animals under the tree...Love Magic, Charlie, Dusty, Tilly, Lacey, Misty, Bailey, Jasmine, and for a short time, Buttons.

I could go on with nicknames, "Master Bargain Shopper," "Queen of Cross Stitch," "Mrs Sports Fanatic," but the best memory I have of Mom is given the nickname "The Prize Fighter." She always encouraged us to be positive and she herself lived by this. Never once did she let life get her down, not when diagnosed with diabetes, not when facing kidney failure and dialysis, not when she had to learn how to walk again with a prosthesis, and especially, not at the end.

As I think about all of the stories and nicknames I lovingly refer to, it hit me that all of the names have something in common. They all sound like superhero names, the Intimidator, The Great Tickler, Dr. Doolittle, The Prize Fighter.  And I find it very fitting, because to us, she is our hero, the strongest woman I know. She is our hero and Tara and I were blessed to be able to call her mom.

Horse Therapy - Hearts and Hooves

Our first day back

Mounted and ready to ride

Done riding and helping Ms Bevy put the gator away.

4 wheeler with Braden's new friend - Sasha

This was back in the day - Braden was around 3 in this picture.

This was one of our very first trips out - look how young Braden looks!

Brushing horses can be very therapeutic. Braden was around 3 in this picture.

History repeats itself and I so firmly believe! It seems that after every Christmas break, Braden has what I call a "honeymoon" period back in school that lasts about a week. But...remember that nursery rhyme that goes "There once was a girl who had a little curl, right in the middle of her forehead. And when she was good, she was very good, but when she was bad, she was horrid!" Well, superimpose she for he! The first week back from Christmas break was great, but then we crashed the second week. I ended up shadowing Braden for one whole week and then reducing the next week by an hour each day. We racked our brains trying to figure out what the issue was. While we can pin it down to medicine now (which since has been successfully adjusted) we also think it has to do with seasonal changes. Winter seems to be very hard for Braden and this realization sent me running to find some sensory activities for him. Enter weekly swimming lessons and a return to horse therapy.

I am very lucky that I worked with a wonderful EC teacher, Beverly Phillips, at Tryon who has background in horse therapy and a program called Hearts and Hooves. I know that at least every Tuesday, Bev loads up her horses and travels to a school and works with special needs students through therapy. While she does not travel to our school, we do travel to her farm every Thursday now for Braden to ride and try to meet some of those sensory needs. This is actually a return for us. Braden had been to Bev's farm before, when he was around 3. He rode horses, but also got to run around and ride the Gator and the 4- wheeler. He loved it there, which I find kind of funny since he is not an animal person (see previous posts about trips to zoos!)

Well, we're back! Can I just say that I love Bev! She's fun, energetic, patient, loving, but does not take "crap" from bossy little 5 year olds :) She is wonderful with Braden. She makes him listen, interact, helps him to build core muscles, and helps him learn! And that is what is so great about our return - he is learning. He's now at an age where he can learn about taking care of horses, how to brush them, how to tack them, and how to steer them! He is so excited to learn how to steer them, like he's driving a car. This was a new step for us last week. We worked in the ring, moving flags from cone to cone, which Braden loved. But then...Bev told him it was time to learn how to steer the horse. The excitement on his face was so evident! He could not stop smiling!
He has also made a new friend at the farm. Her name is Sasha and she is a very young Golden Retriever. She loves Braden! Normally, Braden is not a dog lover. He loves our dogs, but our dogs know and understand Braden. They know there is no licking (keep those tongues to yourselves dogs!) and no jumping. He loves to chase them and loves it when they chase him, but keep your paws off! Sasha has learned all of this quickly. She knows that he loves to chase or be chased and if she brings him a stick, he will throw it for her. She runs to greet us when we pull in and she loves to keep Braden occupied until it's time to tack up and head out.

Thursdays have become a pleasure for us. Sensory needs are met, Braden can run off all of his energy and I can chat and catch up with another adult and wonderful friend! Thanks Bev - you are a gift to us!

Sugar Jitters!

Is it possible to go through sugar withdrawal? I'll let you know. I decided that for Lent, I was going to try to restrict my sugar intake just like I have with Braden. It's not that sugar is necessarily bad, but we consume way too much. What makes it even more difficult is that there is no dietary guideline which tells you how much sugar you should be eating. I initially started this research about a year ago, after we were having some aggressive behaviors with Braden. Sugar has been shown, and I think we all know, to cause hyperactivity in some kids. And since Braden has been known to be addictive to certain types of food, we knew we had to try to reduce his sugar intake.

Diet for Braden has always been important to us. It was the one thing that we could do to try to help Braden when we first received his diagnosis. At that time, we didn't know where to start, when we would get in to see doctors, or even what to do. This was about the time that Jenny McCarthy's book came out about her son and all the therapies/strategies she had tried, with success. The big idea that hit home with us was diet. Braden LOVED dairy. He was addicted to it. If I would meet the mommy's out for lunch, I had to pack his yogurt and cheese stick or there would be a melt down at lunch time. We started with eliminating dairy, or really casein. We took out any food item that contained it. I chuckle to myself as I sit here now and type this oh so matter-of-factly! But at the time, I was scared! I had no idea what Braden would eat and what we would eat! Cheese is in all of our favorite meals! But we learned to read food labels and avoid all dairy items and learned about all the wonderful products out there that he can eat. Rice milk became a staple in our house. And just recently we have switched over to coconut milk, with a plethora of products out there, including coconut yogurt! Anyway, once we took the dairy away, yes, we had behaviors. The best way to describe it, as I once read, is that the casein is not digested correctly by some children and that it enters their blood stream and has an opiate effect on them. But once the withdrawal symptoms subsided, we saw major improvements for Braden. He did begin to talk more and more importantly, the cyclic behaviors that used to consume his day stopped! (One distinct memory that I will never forget happened when I was at class. I came home and Bob told me that he and Braden had walked in a circle for 40 minutes. Braden pushed a toy shopping cart while Bob had to walk behind - Braden insisted - for 40 minutes! No talking, no singing, no stopping!) Yes, there is true power to a healthy diet. Gluten followed the casein and although I have always felt that there was not a huge impact from gluten, it seems that whenever we play with gluten and try to add it back in, we have a hyper kid!

But, let's get back to the sugar. If I thought milk/casein was in everything, boy - was I in for a rude awakening with sugar! IT'S IN EVERYTHING! This was by far the hardest thing to try to eliminate. Braden's breakfast foods were loaded with sugar! His favorite snacks were loaded with sugar! So while trying to do some research for this, I read somewhere that, although there are no guidelines, 25 g of sugar a day is more than plenty. HUH? Did I read that right? So, back to the drawing board we went. And today, I can say, that we do a pretty good job. Breakfast now focuses more on protein. Lunch is typically a sandwich (usually PB and jelly, I have found low sugar types) with a pretty normal, healthy dinner. We do allow one "dessert" a day. Braden's favorite dessert is a chocolate coconut milk fudge bar. The sugar grams aren't too bad, I want to say 8g for one bar and it's pretty yummy! I don't worry too much about naturally occurring sugars in fruit. Otherwise, I would go crazy!

But, what does this all have to do with me? Well, last year for Lent, I gave up casein and gluten. I wanted to experience what I put Braden through. And the verdict? It's not too bad! I do have to say that with the rise in celiac's disease and gluten sensitivities, new products are hitting the market and it makes shopping, oh, so much easier! Daiya has come out with this fantastic "diary" shredded cheese, and it's actually pretty good! So this year's goal is to experience his sugar withdrawal :) This will just make a better me and will force me to look at what I eat. I don't think I honestly do too bad on a day to day basis, but when those before bed snack munchies hit me, what do I reach for? Sugar! Peanut M&M's, ice creams, cookies! I am also trying to watch my intake of aspartame and sucralose, aka splenda, as those "things" are just so bad for me, you, all of us! I have already, gasp!, given up diet sodas! And my coffee or tea has become sugar free, no sugar, no splenda, no nothing. It took a few days, but now it's not so bad. I'm also focusing more on the bento box approach. Actually, I think I am becoming obsessed with it. I ordered Braden a box for his lunch and my lunches, with some mix and match bowls, look more like it too. I think that this is such a healthy approach to food, a little of this and a little of that! My lunch today consisted of pepperoni slices (14 to be exact), 2 slices of mozzarella, raw broccoli dipped in dairy free organic ranch dressing, a nectarine, and 1/2 a container of coconut milk vanilla yogurt. It was pretty yummy! I'm sure I'll blog about my new obsession later, but now back to my sugar story....

So, for the next 40 days, and maybe longer (if I make it) I will be a reduced sugar junkie! Just watch out for the next few days. If you live near me and see my hands shaking or see a crazy woman running through the grocery store madly grabbing candy, it's just Heather going through sugar withdrawal! :)

Inspiration

Almost two years since I have read/logged in/ posted to this blog. I must say that my cousin, Becky Fohner, inspired me to get back to this. She started it with the 31 days of Kayleigh in December and has since continued. What fun to be able to look back, or better yet, to have Kayleigh look back as an adult and have this type of record. One of the things I wish I would have/could have done with my mom. As I get older, my memories seem to slip away much faster. I want Braden to have a piece of his history. Another prompt was to have a record, to see if there repetitions, consistencies of Braden's. We recently hit another hurdle and wonder if it is a seasonal issue. Thank goodness for Facebook which at least showed some record of a possible link.
What a long way we have come! I am so proud of my little boy! Yes, there are days that I still feel as if I'm hitting my head against the wall. But those are fewer and farther between. Braden is now in TK (transitional kindergarten) at a local private Christian school. It is a "regular" school with 14 other bodies in the classroom. Would I have thought we would have been here 2 years ago, probably not. But we have fought hard for Braden, pushed him, tried to find as many things to help him. Now, that doesn't mean we don't have issues, we do, but since I work from home for NCVPS (North Carolina Virtual Public School) it makes it possible for me to go to school and calm or shadow if need be. Right after Christmas we have had some issues, with me shadowing for 2 weeks, prompting my look into the past for identical issues, linking seasonal with behavioral. But overall he has exceeded our expectations!
He has been to a neurologist. No major medical issues, thank goodness! He has been able to help us with medicine for compliance and anxiety. We are working on a psychiatrist next, so that Braden has someone to talk to and have someone else help him with coping/calming techniques. I have also started some swimming lessons, had him join an art club at school and will be starting back to horse therapy today. This is to hopefully help with some of those seasonal issues.
I know this is a quick wrap up of a long and eventful 2 years, but let me end as I always do, I hope to be better about posting on here, as I know the importance of family history.

Can I hire a blog writer?

Wow, didn't realize that it had been this long since writing on here. But then, where to find time? It's such a great thought to think of hiring someone, but then I would have to take the time to interview. Well, what's new, huh? Not a whole lot and a whole lot. We live each day, one day at a time. Every day is a new one for Braden. Some days are awesome and I am astounded by him and other days I feel like I'm banging my head against the wall. But for the most part, the head banging is not so much anymore.
Braden is at school for 3 mornings...we have learned that the number of students really affects his day. Not sure where that will lead us in a few years when we start "real" school. I guess we'll cross that bridge when we get to it. Christmas was a true ordeal for us and one that we will need to re-evaluate when it comes around again. Took us the month of January to recover and get Braden back on track. I have never heard as much screaming as I did in January. I think my ears are still ringing. Heather is continuing to work with him and she is such a life saver. We have transitioned to the public school for services and so far so good. I really like his EC teacher. And we have continued our OT privately because she was such a help to us this past year. So it's one day at a time...
I will say that sometimes I am so astounded by his memory and intelligence. And then what would be a simple conversation for some mothers blows me away when I get that from Braden. For example, I called Bob at work, Braden wanted to talk to Daddy and this is what I heard:
Hi Daddy!
Are you working daddy?
Well, I am at home with Mommy and I am playing with Mommy.
(By this point, my mouth is hanging open and I am wondering where this all came from...)
Okay, bye daddy
Simple, right? Not for Braden, it normally goes, Hi daddy, bye daddy
And memory? Wow, will I so be in trouble with my elephant memory boy. Last week, outside on driveway, I decide to get Braden to write his letters with chalk. I write A, B, C and ask him to try...instead I get:
Braden "A is for ant, B is for boat, C is for cat" This is memorized from a computer that his grandparents got him for Christmas. Now mind you, it had been at least a week since he had played with that. He has the memory of an elephant!!!!

Finally, one accomplishment that I am proud of as a family...we got a certificate from Walk Now For Autism. We raised enough money for Braden's Dream that we were awarded the Bronze Level!!! We have the best friends and family! Thank you everyone for helping us achieve that goal! I hope you'll be here for us this year when we raise money again for Braden's Dream...October 2010 at Lowe's Motor Speedway!

Okay, time to hit the pillow and my promise as I always promise at the end of each post, I promise to be better about blogging! Anyone looking for a job? :)

Back on Track

This morning marks our first visit to TEACHH. The evaluation, which is not being called an evaluation since there are no "formal" tests, will help to determine the steps or direction TEACHH will take. I am very interested in what they have to say...some days my heart is filled to the brim with pride and love with the progress I see Braden taking...and then some days I try hard not to cry and scream with frustration over the battles we fight. Overall, though, I have seen some great improvements...his speech is coming along, he is using 3 - 4 word phrases now, he can say "b" and "p" although he hasn't not applied them to words with those sounds. Yesterday he came up to me in the kitchen, hugged my leg, and said "I love you." Can I just say I melted because this was the first time I can remember him saying those words without being prompted! (I get teary eyed just thinking about it). And for some of you, it might blow you away to realize that this was one of the first times, it's one of those things you take for granted...I love you. It's hard for Braden to share how he feels...he knows happy and not happy and now he may be beginning to understand or feel love. Oh, please! I've also noticed him using some imaginative play. He was Jojo's prince (Heather called me the minute it happened, when Braden kissed Princess Jojo to wake her up) to him using trains or bath toys to create conversation between them. He's also been asking me to join in, Mama, be so and so...although I could scream if I have to play Thomas the Train again. So, needless to say, I'm really interested in what TEACHH has to say.
We've been trying a variety of strategies with Braden. We have him on the gluten/casein free diet, he has been receiving community based rehabilitative services, speech, occupational therapy, Heather has done some ABA therapy with him, and Beverly has had him out to her farm for riding therapy. He also goes to pre-school and this fall will be going three days a week. Ya!!! This will be much needed mommy time! He has been going twice a week and I relish those mornings I have "off." In addition to all of the therapies, I make us get out of the house. It would be so much easier to stay home, to stick to routine, and not have any melt downs. But this really doesn't help Braden, it doesn't give him the opportunity to use or learn some much needed social/transitional/environmental behaviors. It even helps me to learn social niceties when I have to learn to calm down and not scream at the top of my lungs or swat a little boy's behind when out in public, especially after I have been slapped, hit, screamed at by Braden. Some day I will have to write about some of our public outings and the displays experienced in an attempt to explain how hard to can be. But, since I just lived through one when I took Braden to the Pittsburgh Zoo last week, I really don't want to have to relive it just yet.
Thanks for taking the journey with us. Yes, it's easier to keep it all in and pretend that we are the perfect family. But then again, no, it's not. It's easier to share our journey, to receive support and advice and love...something Braden is hopefully starting to learn himself.

Okay, so let me back up and explain how we got here. Everything began with our concerns about Braden's speech or his lack of speech back in October/November. Then one night, we were at a dear friend's house for dinner...he was jumping on an ottoman and my friend called his name. He would not look at her when she repeatedly called his name. I could see how frantic she was becoming and alarm bells went off in my head. He never really made eye contact with her, would look fleetingly at her, but never sustained contact. Over the next few days, I made an appointment with his doctor. He reassured me that he didn't think it was autism but was concerned with the speech delay. We were referred to an ear doctor, who found fluid in his ears and went ahead with tubes, and to the local children's developmental agency. Our specialist came out to evaluate Braden in November and then wanted to wait to see how the tubes would help his speech. Around this time we also placed Braden in a local church preschool to help open time up for me so that I could start an internship with my masters program. Everything seemed to be going great, I was starting to relax and wonder why my friend became so distressed over his lack of looking at her....and then I was slapped in the face. I got a call from Braden's preschool in January. Braden was being aggressive in the classroom, was uncontrollable, and they were considering kicking him out. I went to pick up Braden from the director's office, confused over this sudden problem (I had only ever heard a few instances of Braden pushing and had thought we had taken care of it) and upset over the fact that they were considering kicking him out. As I talked with the director, she asked if I had talked with his doctor. I briefly described our concerns and shared that the doctor didn't seem concerned. I could see on her face that she was concerned and talked about there being a special school for kids like Braden...boy, did I see red. She probably didn't handle that well and I probably didn't either because I wasn't ready to hear that. My dear friend called me that afternoon and I dreaded telling her what had happened because I knew what she would say. She metaphorically slapped my other cheek and woke me up...Braden being kicked out was not normal and there was something wrong. I was very abrupt for the rest of the conversation, not because I was mad at her, but because I was crying uncontrollably. I knew she was right. The next day I made a list of things I was concerned about and was shocked by what I read...how could all of these things have gone on and not take notice...I was looking at each individual piece and not at the whole picture. When I saw the whole picture, I got very scared. I called our early intervention specialist, told her all of the concerns I had written down and requested that the psychologist evaluate him. Here is what I had written:

• kicked out of preschool
• pushing other kids down forcefully
• running, head down uncontrollably and running in circles
• hitting teacher (once observed by me and once told by director)
• won't sit at table for snack time at preschool
• told to me by director that he pushes children who enter his space and doesn't make eye contact with other kids
• running in circles at our house
• obsession with wheels and pushing objects with wheels - how he lays to look at the wheels
• will open and close doors continuously
• temper tantrums over unknown reasons
• speech and language delay
• hitting us and others (seemed to have stopped but has resumed)
• lines up cars, trains, other objects
• screams and cries over trivial things, doesn't use language to convey what has upset him
• will walk on toes
• will give hugs and kisses when asked but rarely does it without prompt
• likes "Ring around the Rosie" but when analyzed, think it's more about the spinning and not so much the song
• rubs thumb over fingers when he gets excited
• hard time with transitions, especially when coming into house (ours, grandparents, some friends) from outside
• turns lights on and off
• will slap cheek/ears when upset
• played with belly button when upset or uncomfortable but has now moved it down south...

The first evaluation was done on February 13th. They came out to the house and observed him. After comparing notes, Braden was borderline, the results were inconclusive. Now, as a teacher, I knew that if I didn't get a diagnosis, Braden would fall through the cracks and not receive any services. But how could I face labeling my child? The afternoon was filled with phone calls from the agency, there was another test they could give, would I be able to come to the office, when was the best time....possibly waiting another month before this evaluation, trying to decide about the evaluation or with the support of the psychologist, labeling my adorable son. But finally we were able to work out a time within the following week. This evaluation would give us more information and maybe give us the diagnosis. After this evaluation, I knew....they didn't have to tell me, I knew. Braden is high functioning but he was diagnosed with full blown autism...he fell right in the middle. God, why? I'm still asking...I don't understand, I don't know if I have the patience, how am I supposed to help him? This at least gives a background of where we've been. I will get you up to speed on my next post about where we are now, what we've read, what we're trying, good things we've seen, problems we're still having, and wonder about where to go next....