Tuesday, May 27, 2008

Carson the Great Magician!

Below is how we spent our Friday night. It was wonderful. The boys were cracking us up! It is a little long but very cute.

Check it out people! My son is getting better. Listen to all those words and interaction!

(Please excuse my annoying voice and the messy living room.)

Enjoy!

video

YES, Fin is the most easy going baby on the planet. He just laughs and plays along. They really do love one another very much.

Thanks for checking in - Em

Monday, May 26, 2008

Ten things every child with Autism wishes you knew

Hi everyone - I found this on another parent's blog and found it to be very moving. It has been used as the foreward to three different books. It gives a great interpretation of what these children are feeling. I hope it helps you understand. I know it helps me. - Jay

Here are ten things every child with autism wishes you knew:

1. I am first and foremost a child. I have autism. I am not primarily "autistic." My autism is only one aspect of my total character. It does not define me as a person. Are you a person with thoughts, feelings and many talents, or are you just fat (overweight), myopic (wear glasses) or klutzy (uncoordinated, not good at sports)? Those may be things that I see first when I meet you, but they are not necessarily what you are all about. As an adult, you have some control over how you define yourself. If you want to single out a single characteristic, you can make that known. As a child, I am still unfolding. Neither you nor I yet know what I may be capable of. Defining me by one characteristic runs the danger of setting up an expectation that may be too low. And if I get a sense that you don't think I "can do it," my natural response will be: Why try?

2. My sensory perceptions are disordered. Sensory integration may be the most difficult aspect of autism to understand, but it is arguably the most critical. It his means that the ordinary sights, sounds, smells, tastes and touches of everyday that you may not even notice can be downright painful for me. The very environment in which I have to live often seems hostile. I may appear withdrawn or belligerent to you but I am really just trying to defend myself. Here is why a "simple" trip to the grocery store may be hell for me: My hearing may be hyper-acute. Dozens of people are talking at once. The loudspeaker booms today's special. Musak whines from the sound system. Cash registers beep and cough, a coffee grinder is chugging. The meat cutter screeches, babies wail, carts creak, the fluorescent lighting hums. My brain can't filter all the input and I'm in overload! My sense of smell may be highly sensitive. The fish at the meat counter isn't quite fresh, the guy standing next to us hasn't showered today, the deli is handing out sausage samples, the baby in line ahead of us has a poopy diaper, they're mopping up pickles on aisle 3 with ammonia….I can't sort it all out. I am dangerously nauseated. Because I am visually oriented (see more on this below), this may be my first sense to become overstimulated. The fluorescent light is not only too bright, it buzzes and hums. The room seems to pulsate and it hurts my eyes. The pulsating light bounces off everything and distorts what I am seeing -- the space seems to be constantly changing. There's glare from windows, too many items for me to be able to focus (I may compensate with "tunnel vision"), moving fans on the ceiling, so many bodies in constant motion. All this affects my vestibular and proprioceptive senses, and now I can't even tell where my body is in space.

3. Please remember to distinguish between won't (I choose not to) and can't (I am not able to). Receptive and expressive language and vocabulary can be major challenges for me. It isn't that I don't listen to instructions. It's that I can't understand you. When you call to me from across the room, this is what I hear: "*&^%$#@, Billy. #$%…" Instead, come speak directly to me in plain words: "Please put your book in your desk, Billy. It's time to go to lunch." This tells me what you want me to do and what is going to happen next. Now it is much easier for me to comply.

4. I am a concrete thinker. This means I interpret language very literally. It's very confusing for me when you say, "Hold your horses, cowboy!" when what you really mean is "Please stop running." Don't tell me something is a "piece of cake" when there is no dessert in sight and what you really mean is "this will be easy for you to do." When you say "Jamie really burned up the track," I see a kid playing with matches. Please just tell me "Jamie ran very fast."Idioms, puns, nuances, double entendres, inference, metaphors, allusions and sarcasm are lost on me.

5. Please be patient with my limited vocabulary. It's hard for me to tell you what I need when I don't know the words to describe my feelings. I may be hungry, frustrated, frightened or confused but right now those words are beyond my ability to express. Be alert for body language, withdrawal, agitation or other signs that something is wrong. Or, there's a flip side to this: I may sound like a "little professor" or movie star, rattling off words or whole scripts well beyond my developmental age. These are messages I have memorized from the world around me to compensate for my language deficits because I know I am expected to respond when spoken to. They may come from books, TV, the speech of other people. It is called "echolalia." I don't necessarily understand the context or the terminology I'm using. I just know that it gets me off the hook for coming up with a reply.

6. Because language is so difficult for me, I am very visually oriented. Please show me how to do something rather than just telling me. And please be prepared to show me many times. Lots of consistent repetition helps me learn. A visual schedule is extremely helpful as I move through my day. Like your PDA or day-timer, it relieves me of the stress of having to remember what comes next, makes for smooth transition between activities, helps me manage my time and meet your expectations. I won't lose the need for a visual schedule as I get older, but my "level of representation" may change. Before I can read, I need a visual schedule with photographs or simple drawings. As I get older, a combination of words and pictures may work, and later still, just words.

7. Please focus and build on what I can do rather than what I can't do. Like any other human, I can't learn in an environment where I'm constantly made to feel that I'm not good enough and that I need "fixing." Trying anything new when I am almost sure to be met with criticism, however "constructive," becomes something to be avoided. Look for my strengths and you will find them. There is more than one "right" way to do most things.

8. Please help me with social interactions. It may look like I don't want to play with the other kids on the playground, but sometimes it's just that I simply do not know how to start a conversation or enter a play situation. If you can encourage other children to invite me to join them at kickball or shooting baskets, it may be that I'm delighted to be included. I do best in structured play activities that have a clear beginning and end. I don't know how to "read" facial expressions, body language or the emotions of others, so I appreciate ongoing coaching in proper social responses. For example, if I laugh when Emily falls off the slide, it's not that I think it's funny. It's that I don't know the proper response. Teach me to say "Are you OK?"

9. Try to identify what triggers my meltdowns. Meltdowns, blow-ups, tantrums or whatever you want to call them are even more horrid for me than they are for you. They occur because one or more of my senses has gone into overload. If you can figure out why my meltdowns occur, they can be prevented. Keep a log noting times, settings, people, activities. A pattern may emerge. Try to remember that all behavior is a form of communication. It tells you, when my words cannot, how I perceive something that is happening in my environment. Parents, keep in mind as well: persistent behavior may have an underlying medical cause. Food allergies and sensitivities, sleep disorders and gastrointestinal problems can all have profound effects on behavior.

10. Love me unconditionally. Banish thoughts like, "If he would just……" and "Why can't she….." You did not fulfill every last expectation your parents had for you and you wouldn't like being constantly reminded of it. I did not choose to have autism. But remember that it is happening to me, not you. Without your support, my chances of successful, self-reliant adulthood are slim. With your support and guidance, the possibilities are broader than you might think. I promise you – I am worth it.

And finally, three words: Patience. Patience. Patience. Work to view my autism as a different ability rather than a disability. Look past what you may see as limitations and see the gifts autism has given me. It may be true that I'm not good at eye contact or conversation, but have you noticed that I don't lie, cheat at games, tattle on my classmates or pass judgment on other people? Also true that I probably won't be the next Michael Jordan. But with my attention to fine detail and capacity for extraordinary focus, I might be the next Einstein. Or Mozart. Or Van Gogh.

They may have had autism too. The answer to Alzheimer's, the enigma of extraterrestrial life -- what future achievements from today's children with autism, children like me, lie ahead? All that I might become won't happen without you as my foundation. Be my advocate, be my friend, and we'll see just how far I can go.

Saturday, May 24, 2008

Carson gots the niffles and the neezes

Hi Everyone! Sorry we've been slacking this week on our blog. With Em being gone Sunday - late Wednesday night, I didn't have the time or energy. It was a crazy week. Our life definitely felt out of sync with Mommy gone. Thankfully, I had a lot of help. Of course, this happened to be the same week that my portion of a huge project that I am assigned to at work took off so I was at work until almost 6:30 all the nights that Em was gone. Nonna and Papa Tom had the boys during the day on Monday and Wednesday and Aunt Carol and Cousin Dan had them Tuesday. Granny picked them up for me everyday at 3:00 once she got out of work so by the time I got to her and Papa's house to pick them up, they were already bathed, fed, etc. and I had delicious dinners waiting for me. That doesn't happen when Emily is home because neither of us cook much. Uncle Tommy and soon to be Aunt Niki came over to watch the boys Wednesday so that I could go pick Emily up from the airport. It's so nice to have her back home. I truly don't know how single parents do it.

Thankfully, Carson and Griffin both fell asleep on the way to drop Em off at the airport on Sunday so there was no drama when dropping her off. They slept all the way home too! Once we pulled into the driveway, Carson woke up and said "Where's Mommy?" I answered him and told him that she got on an airplane. He looked up in the sky and said "mommy in pace." He's not good with his s's so I said "yes, mommy in pace."

I didn't get to spend too much time with the boys through the week but we had a lot of quality time Sunday night when we got home. Carson and I did flashcards once Griffin went to bed. He knows all of his letters and the sounds that they make. He's been watching his Leap Frog Letter Factory video so he sang a song for each letter along with the sound that it makes. There were points when I was laughing so hard that I was crying because of his lisp and the sounds he was coming up with. We then went through them again and he made up a song for each of the pictures on the cards as well. Where he comes up with these songs, I'm not sure. I love his imagination. He's becoming more and more interactive everyday. We are so blessed!

Again last night, both Emily and I were in stitches. The boys go through stages with their cartoons as most kids do. We happen to be back in a Wiggles stage. Last night, Carson started to sing his song "Rolling down the sandhills, rolling down the sandhills" and he laid on the floor and start rolling across the living room. The next thing we see is Griffin try to gracefully throw himself on the floor and do several rolls across the living room floor as Carson sang. Emily and I couldn't believe that he got the concept and just started following along to Carson's song. He is only 13 months old. We were laughing so hard at Fin that Carson kept saying "hey guys, I'm right here," which made us laugh even harder. These are the things that make our life so fun.

Today, we were off to Cousin Lora and Jeff's for a graduation party. It was a beautiful and fun-filled day. Carson had a blast swimming and bouncing on the trampoline. It was great to see everyone and we got exciting news that Cousins Audrey and Dale are having another baby! The boys love all of their cousins so we couldn't be happier. Cousin Rachel is due in August and now Audrey in December. Carson was so tired that he was sleeping by the time we were out of Lora and Jeff's sub. He awoke once we got home and informed us "Carson gots the niffles and the neezes!" He's so funny! Off to Aunt Carol and Uncle Roger's tomorrow to see the other side of the family! More swimming! Carson is so excited!

Thursday, May 22, 2008

My child is not a label

We received this from our friend Becky. I wanted to share it with each of you. I hope that you enjoy it like I did.


My child is not a label

By Denise Ulman, denise@springmeade.com
June 1999

My child is not a label
My child is a person in their own right.
My child is a breathing, thinking, loving human being.
I have accepted that you need to assign labels, but only
because the labels may help to explain my child's differences.
That does not make my child that label, and that label makes
my child no less a person than any other person on this earth.
Do not look at that label first, look at my child first.
Do not try to understand my child by only that label.
Look further to understand my child by gazing into my
child's eyes and listening to what my child has to say,
no matter what form my child's communication may take.
My child may not communicate in a way that you understand,
but that does not mean that my child can not communicate.
It may not always be easy to understand what my child
has to say, but if you persevere you will find the effort
well worth the reward of getting to know my child.
Forget the label and let my child teach you who he/she is.

Denise Ullman and friends

Saturday, May 17, 2008

Jay calls it a Vacation.

I beg to differ. Tomorrow I leave for New Orleans on a business trip. Yes, there are parts of me very excited to go. I have never been to New Orleans. I get to get away from my office and insane workload. I get to stay at the Ritz Carlton. I get to try new restaurants and food. I get to visit with my old boss Doug.

But..... I hate leaving. I hate not being with my boys. For the record, when I say my boys, that includes Jay. They are all my boys and I will miss them all terribly.

Mostly, I worry. I worry since the week we just had was a really hard one. I worry that Jay will be overwhelmed and frustrated. He is a great father but anyone can get that way when left with two kids while working crazy hours. I worry that the boys will be more challenging while I am gone.

It is not a vacation to me. I will still be working. Yes, I will get to eat my meals without tending to small children. I will get to go to bed when I wish and watch whatever I want on TV. I will get to chat with other adults without scanning constantly to find one of my children. I will get to shower in the morning without trying to content whining voices.

But... I will feel half like myself. Just as we all need a break, so do I. The funny thing is that when those breaks become available (either by choice or not), my world is not the same. My heart will be here with them and I am sure I will have tears at some point in the 72ish hours I will be gone.

Chances are, they will not miss a beat. They will be fine, I know. They will enjoy the time together but that is almost what hurts the most. What will I miss? Funny comments, lots of hugs and being needed. Surprisingly the grind of daily life all of the sudden becomes so important when you are not going to be there for it.

I begged Jay to come with me. It would have been a pretty cheap trip and he could have enjoyed the weather and pool while I worked. Truthfully, we could use some alone time but I understand. There is no way he would leave them. I have to go, he doesn't. Although, there is a part of him that longs for days on a pool chair sunning and resting, he would truly not be able to relax without our boys. I totally get that. I feel the same way.

Jay, Carson and Fin- I will miss you so much. You all already know how much I love you. Have fun together. I will be thinking and praying for you. Wednesday will come quickly and even though you will probably be asleep when I get home, I will kiss you nonetheless.

I have not even left yet but I can't wait to be whole again!You three have my heart and it always stays with you!

Monday, May 12, 2008

Pirate Invasion

Carson's birthday is in March but I still wanted to share some pictures with you of our fun celebrations. For is 4th birthday, Jay, Fin and I took Carson to this place where they have these huge blow up slides and rollerskating. We then went out to lunch and he got to get a birthday sundae (pre-diet).

Enjoy the pics!!


Carson loving his birthday treat!



The nice people at the table next to us took this pic. I wish Fin was looking at the camera.



One of the huge slides. He loved this more than anything else we did that day!



Can you tell he is having fun?



Jay spiked Fin's hair!




Rollerskating time! Yes! We did make him wear a helmet and knee and elbow pads. I know, we are dorks. None of the other kids had them on.



I love this pic. Jay took him out onto the rink as I was with Fin. I was trying to get some good pictures but the lighting was bad.



Carson really loved skating but was much more impressed with the slides.



To celebrate with family we had a pirate party for Carson at our new house. It was so much fun! Carson did really well. He was a bit shy at first, preferring to hang out with Granny in the hallway but once he warmed up, he was okay.

As you can see, we had some very scary pirates at the party!!





Carson was killing us as he was super excited for his party. The morning of, he had to put on every single piece of pirate gear we own.



Happy Birthday Carson! The day you were born we were blessed beyond our wildest dreams. You are without a doubt one of the greatest loves of my life.

Sunday, May 11, 2008

Happy Mother's Day!

First of all, Happy Mother's Day to all of you moms and grandmas reading this blog. It's a good day to reflect on what special people moms are. They give their life so unselfishly to their children and grandchildren and rarely take time out for themselves. Some special wishes that we want to send out from us and our boys are to the boys' grandmas - Nonna (Em's mom), Granny (my mom), Grandma (my step-mom), Aunt Amiee (Carson's godmother), Aunt Kristie (Griffin's godmother), Aunt Carol (my godmother), and the boys' great grandmothers (Grandma Krawczyk and Grandma Brandt.) I hope that all of you know what an integral part of our lives you are. We are truly grateful for all that you are and all that you do to make our lives easier and more special. We are very blessed to have each and everyone one of you in our lives.

I'd also like to wish a very happy day to my wonderful wife, Emily. Carson and Fin are so lucky to have you. I couldn't ask for a better mommy for my boys or a better wife for myself. You're my best friend! You bring so much joy to the lives of everyone around you. You are a remarkable woman, friend, wife, mother, daughter, sister....the list could go on. You and the boys are the greatest gift that God has given me. I hope that you know how much we all appreciate you (although it may seem like we take you for granted.)

Happy Mother's Day to all of you! Enjoy your day!

Thursday, May 8, 2008

Rolling

Well I found a new game that Carson likes and it's called Rolling. The name says it all because basically the whole game consists of us rolling on the floor. I made it up Monday night when Emily and Griffin were out. Carson was laying on my stomach/chest when we were watching the Wiggles. I rolled over and started fake biting/kissing/tickling his neck. It was quite a hit and we ended up having to play it for about a half an hour. His laughter was so hearty and joyous that I couldn't stop playing even though I was sweating (yes, big surprise to those of you who know me well, since I am always sweating.) He would look at me with his big, green eyes and say "Daddy, happy when rolling!"

Tonight, we played again...but this time Griffin and Mommy joined in. I know, I know...what an exciting life we lead. However, I realized at the beginning of this week that tonight was going to be the only night this week that we weren't either running around to parties/family gatherings or having people over our house. I knew that I wanted to make the most of tonight because I treasure the little time that we get as a family when we're not running to doctors, therapies, etc.

We started off the night with rolling. Carson and I started it and he was loving it. The next thing I knew, Griffin came waddling over (looking like a little duckling now that he is walking.) Griffin wanted a turn. He was pushing his way right in trying to get on top of us. I asked Carson if Griffin could have a turn and got the typical "No, it's Carson's turn." We ended up taking turns and Griffin loved it too. He laughed so hard. Then, Emily decided to join in and wanted me to roll her. We were laughing so hard because as we were trying to roll, I looked over and saw Carson trying to roll Griffin....priceless!

After a short break, I was in the kitchen and heard the sweetest little voice with a request..."Daddy, do you want to play hide and go seek?" Oh my God....a ten word sentence! We're getting more breakthroughs! I couldn't be happier! So, of course I play hide and go seek. In round one, I get to hide while Carson counts out loud to ten while he squints his eyes and pretends like they're closed. I hide in the hallway bathroom with the light on and the door half open because he gets scared to open it if it's dark. I hear him coming and I hear the refrigerator open and him say "he's not in the frigerator," then "he's not in the wall," (how exactly a person could get in the wall I'm not sure.) I'm trying to contain my laughter as I hear Emily laughing her butt of at his commentary. He then peeks in the bathroom and says "he's under the potty." I was standing behind the door so I'm not sure where "under the potty" came from but it was so funny. His hiding spots tonight were very well thought out as well. Some of my favorites were him laying on top of the toy box, laying across the audomon, and sitting on the living room floor with a body pillow across his mid-section/lap with his whole upper body and legs exposed. He's so tricky!

Doing these things as a family are when I'm at my happiest. The fact that Carson is understanding hide and seek and being so verbal is so wonderful. Our prayers are being answered.

Wednesday, May 7, 2008

Green Faces

At Carson's school they use a face system to communicate behavior. A red face is a really bad day - time outs, screaming, not listening. etc. A yellow face is an okay day - maybe one time out, some redirection but overall okay. A green face is a great day - no time outs, little redirection, good listening, etc.

At the beginning of the school year we did not even use this system with Carson as he did not understand it and we had so many other things to focus on I have been told by his teacher that Carson is the most difficult student she has ever had. This is not exactly what you want to hear from your child's special education teacher.

I had letters home everyday regarding his behavior. He would not listen, he would run away, he would yell (self stimulating behavior), he would laugh in their face, etc. It was horrible. I would cry and then want to go to school and pick him up and never send him back. At one time we even had one of our doctors tell us to pull him out as he thought it was too stressful for Carson.

Every meeting with the teachers, Jay would worry about me as he knows just how protective I am. He would tell me to please not tell them off. Or please, just try to stay calm. Many times both of us would be completely deflated and end up crying after the meetings with the teachers.

I have had issues from time to time with the teachers and Carson's school but now that we are at the tail end of the year, I can tell you..... they totally helped my kid. I never thought I would say that. Eight months ago, I would have laughed at that. I knew that going to this school would be good for Carson but truthfully, I did not know if I could handle it. It was hard on me.

Not many three year olds ride a bus to school (something all his therapist were adamant about), spend four hours a day in a structured school classroom and have homework and therapy. To me, it was a lot.

I can honestly tell you one thing - he is a different kid than he was last September. He has friends he loves that love him back. He has an understanding for time out, his language has increased tremendously, he has come out of his shell, and he loves going to school.

This past Feb. we started using the face system as a way to communicate to Jay and I how the day went and also to try to get Carson to understand it. It may sound crazy but in this whole year, Carson has only had four really good days at school.

Most days he has a red or yellow face. Believe me, I am thrilled with yellow. Red still really upsets me as I know that he struggled that day. Greens (there have been 3.5 of them) are like winning the lottery. They not only make my day great but fill me up and affirm to me that what we are doing is working.

Yesterday, Carson got his fourth Green face. Well, it was a yellow and green mix but I consider it a green. If there is any green on that paper, it is a huge success.

We have been trying to motive Carson and reward him for good behavior. He knows that if he gets a green face he gets a present. Usually it is a new book that he gets to pick out but last night I was at Toys R' Us buying a gift so, I picked up a reward while I was there.

I decided to get Carson a tool kit. He had one when he was younger but it was too babyish for him now. This one is for bigger boys and he LOVED IT. He is always asking us for the tape measure, or screwdriver or hammer. Now, he has his own and he earned it.

After his bath last night, Jay and I reviewed his green face with him and gave him his reward. He opened it all up and then looked at me and said - "I can fix anything, mommy".

Yes you can Carson!- You can do anything you dream of!!!

Tuesday, May 6, 2008

In the eyes of my 4 year old

Last night I went to the bridal shop with my mom and sister (Fin came along too. He loves to shop) to help my mom pick out a dress for my brother's wedding. She did find the perfect dress and once ordered we went out to eat. I was worried I would not get home in time to see Carson off to bed since he had been so tired earlier in the day.

When I got home, I was happy to see he and Jay sitting at our dinner table having some chips and pop. They looked so cute. Carson looked so grown up just chilling out with Daddy. Yippee. I made it home in time to snuggle with my little man before bed.

Carson has a very tough time falling asleep. He struggles with shutting off his mind and the night time routine can take up to two hours (no I am not exaggerating). To help with this Jay and I give him Melatonin (Per his Ped. Neurologist) and spend some time snuggling with him until he drifts off to sleep.

Lately he likes to snuggle in our big bed while watching his God Made Animals video (Thanks Granny!). It is a nice video about Noah (Nola according to Carson) and all the animals on the Ark. Anyway, this helps him fall asleep and then Jay will carry him to his bed and all is well until about 0530.

Last night I was tired and Carson and I were getting ready to go snuggle it out in my bed. I was changing out of my work clothes and had just put on some old sweat shorts that I have had since Jay and I dated. I love them, but let's just say, they are not real pretty.

All of the sudden Carson goes into the laundry basket and picks out a top for me. He brought over to me a blue tank top that has bleach stains on it and said - "Mama put it on". I actually love that tank top so, I put it on.

I was quite a sight- no make-up, hair up in a clip, old sweat shorts, bleach stained tank top. When I turned around with the top on, Carson walked over to me and said "You Beautiful, Mommy".

And you know what? I realized I have never felt more beautiful!

Sunday, May 4, 2008

Funnies from the weekend

Although Carson is speech delayed, he does have a lot of language. We just had his IEP meeting at school this week and his expressive language has improved by over nine months. He is at a 2year 8month expressive language level. That was great news. Of course, he is 4years and 2 months but I know that we will get up to our age eventually. (His receptive/processing is at 2yrs. 3months)

One of the most fun things about watching your child come out of their shell is listening to Carson try to communicate. We love it and celebrate each new word. Here are some funnies from the weekend -

Wiggers of Oz (Wizard of Oz) - We were visiting with Amiee and Ron and the Wizard of Oz was on. Carson loves it and wanted to watch it again. He requested the Wiggers of Oz.

Ice Cream are good for you (Ice Cream is good for you) - Carson trying to negotiate having some chocolate ice (rice) cream for breakfast. Gotta hand it to him! We will work on verbs!

It's Beautiful Daddy - While pulling into the parking lot of the family party we attended this weekend. They had a bounce house and Carson thought this was beautiful.

It's gone up to Space - Carson accidentally let go of his balloon at the family party and when Amiee told him it went up into the sky, Carson corrected her and told her that no, it went up into space (with a lisp).

The best funny from the weekend was on Sat, while playing hide and seek. Carson has recently understood how to play this game and loves it. When we count and look for him we will talk out loud and say things like - Carson is not in the kitchen or Carson is not in the study. All the while Carson is telling us where he is to come and find him. When Carson was looking for Jay and I this weekend, he too was talking about where he was looking. The funniest part was, he would say things like - Mommy's not in the bowl (the size of a kids cereal bowl) or Daddy's not under the firetruck (a kids ride on firetruck). Too funny. It was all Jay and I could do to not crack up and give away our hiding spots.

Everyday is a surprise and so much fun. Our children are such joy!

God only gives you what you can handle

Although I think that both Emily and I keep a pretty upbeat, positive attitude about what Carson is going through, there are times when it becomes overwhelming and downright sad. I had a conversation with my mom a couple of months ago and she said "God only gives you what you can handle." At the time, I was feeling like I couldn't handle it but the more I think about it, the more I believe that statement is true. Our life is a little crazier and busier than the norm so God gave us this perfect little angel named Griffin. Griffin just turned one and he couldn't be an easier baby. I got to spend some quality "Daddy time" with him yesterday. Typically, we all do everything together around here but usually when we split up, it's Daddy and Carson and Mommy and Griffin. Yesterday started out like any typical weekend...time to get groceries, etc. The plan was for me to get groceries while Griffin was taking his morning nap so that Emily could do stuff around the house, pack bags for our afternoon outing, etc. and only have Carson to deal with. Well, my plan didn't work. I took too long to get around and Griffin woke up so I decided to take him with me. Our trip to the grocery store turned into a two hour ordeal because we had to go to three different stores looking for Carson's gluten free pizzas. Griffin was a perfect angel. He never made a peep. I had given him a mohawk hairstyle before we left so people at the stores were commenting on his hair. He would just smile and laugh. It literally was as easy as if I would have been by myself...a far cry from last week when I took Carson (haha!) Griffin is PURE JOY! It just reaffirmed to me that God really does only give you what you can handle.

Our First Trip to the DAN Doctor

Friday was our appointment with the DAN (Defeat Autism Now) Doctor. Although, we have been seeing a biomedical doctor since October, we wanted to also try a doctor within the DAN network. This network of doctors specializes in autism, adhd, etc. and is very familiar with all of the latest and greatest approaches. We took all of Carson's records with us to get this doctor up to speed. After our conversation, the doctor said that the GFCF diet seems to be helping so stay on it and he also suggested some further supplements/vitamins. Carson received his first B-12 shot and the doctor ordered them for us so that we can give them to him every other day at home. Along with the B-12 shots, he will also be getting two multi-vitamins and one B-6, zinc, magnesium, and cod liver oil (sounds delicious, huh?) These will be added to his Ultracare for Kids protein powder, Phosphatidyl Choline, and Glycine. Pretty soon, our cupboard is going to look like his Grandma Linda's cupboard. The good thing is that this doctor uses Kirkman Laboratories for his supplements so they're designed for kids. Both of the vitamins come in wafer form. They look and taste exactly like SweetTarts. I gave him the first one and called it a "white bean" because he loves orange tic-tacs, but calls them "orange beans." He ate it and I was thrilled but of course, it didn't last. On the second one, and since then, he says "yucky" and won't eat them. Thankfully, they dissolve in his orange juice. The doctor also ordered more urine and stool testing. We go back in a month and if the urine is showing a high level of metals, we will start chelation, which strips his blood of these heavy metals.

Saturday, May 3, 2008

Moments of Boring and Typical!

One of the things that we stress about are outside (the norm) activities. People and activities out of our norm can be very stressful. We have to worry about food being served, crowds, loud situations, Carson's mood and yes, even Jay's and my patience level. We have missed many events or have broken them up due to the stress of going out.

As a mom, one of the worst stresses is playing with other kids Carson's age. Carson has tons of interaction with other kids at school and with his cousins but that is it. We don't really hang out much with other people with children besides family.

This is in part due to how we don't know how Carson will act or, how other kids will be with him. Carson is either very interactive (to the point of annoyance) or he will ignore you.

For example, this winter a little girl came over to play when we were outside building a snowman. She was trying to talk with Carson and he was ignoring her but did give her a few responses. She then asked me how old he was and when I told her, she asked me why he spoke like a baby. Believe it or not, that made me cry. It was so hard to realize that he is getting to an age where other kids may notice that he is different. I know she did not mean any harm but as a mommy, I am very sensitive to others accepting and loving my child.

This week Jay's dad (Bill) was in town and came over to visit the kids. We had a nice visit and when he was leaving Carson decided he wanted to go with him. That was not going to work, but we did have him put a jacket over his PJ's and walk grandpa out to his car.

When we were out there, the two families across the street were out playing in the front yard. Our neighbors are very nice and even though we have only lived here one year, we have chatted from time to time.

When the kids saw Carson, they ran over and asked him to come over and play. The older little girl said - "can he come over and play?". I asked Carson if he would like to and he was giggling and happy and said "yes". I took him across the street where he played chase, rolled on the grass, laughed and interacted with kids he hardly knew.

When it was time to leave he asked for "5 more minutes" and I said okay. In my mind, I was stressing about leaving as there could be a huge meltdown. After 5 minutes, I reminded him we had to leave and all was well. With some prompting, he thanked his friends and their parents and we walked home.

It was amazing. It may sound silly to so many of you but this is huge for us. He interacted, spoke and engaged in other kids! Kids he did not know! Most of all, he was happy and joyous as he played and ran and laughed.

That is all I want for him. I want him to be happy and not to struggle with "out of the norm" situations. I want him to be accepted for who he is and others to see the amazing, beautiful spirit that I do.

We will get there. These moments of boring and typical fill me up and affirm to me that we are almost there. We can do this! We will never give up on him!

Let's talk about poop!

Hi, it's me Jay....

Okay, so back to my story about this GFCF diet and the effect that it is having on Carson. I'm going to apologize in advance for being graphic and gross but this may benefit someone reading this someday. Carson is typically a constipated child and has been most of his life. He definitely gets that trait from his mother. We started the diet on Thursday, April 17. By Monday, April 21, I received a call from his teacher telling me that he had two blow-outs at school and that his stomach was bothering him. I had written her a note that morning about the diet so she wondered if it could be that or if he was sick. I was sure that it was from the diet. It happened a third time at school. I called Nonna (Em's mom) because it was her day to babysit and let her know so that she wouldn't be alarmed if it happened once he got home. It did happen again we he got home. Anyway, this continued on for one whole week (through Monday, 4/28.) We're talking huge diapers full of the most disgusting looking (and smelling) poop that you will ever see. I was lucky enough to only be on the receiving end of two of them. My Aunt Carol, Granny (my mom), Nonna, and Carson's teachers each got their fair share. Somehow, Emily missed all of them.....hmm? You could see the yeast...straight up disgusting yeast...poor little guy. All of this yeast had been trapped in his system from all of the gluten and casein that he had eaten prior to the diet. I read in my book that this was supposed to happen and Emily confirmed this with a friend of hers. THANK GOD...the diet is working! We're on the right track. I feel so bad for Carson because his stomach is hurting. I know how it feels when you need to have a blow-out (as do all of you) but imagine like 15 of them in one week. Coincidentally, both Carson and Griffin had their well child visits last week. Without even telling our pediatrician about the diet (since we had already gotten the vaccine lecture,) the doctor noticed the red spots throughout Carson's private area and said that it was nothing to worry about.....just YEAST spots! Hooray! It seems to have tapered off since the beginning of this week. Maybe all of the yeast has died and made its way out!

Thursday, May 1, 2008

The hardest talk!

I remember for months wondering what on earth was wrong.

Was I over reacting? Was I being too much of a new mommy? Why were all the other two year olds in the family, talking, laughing, visiting, developing, and not us? Where was the spark in his eye? Why did he not like going anywhere? When was he going to talk to me? Where did his spirit go? Why was he so difficult?

Many times I talked about these fears with family and friends and many times I got the same response. "He will"-"Some kids just take longer" - "You can't compare kids to one another"

These responses would calm me and a few weeks could go by before I started to worry again. Eventually though, someone had to be brave. That someone had to tell me - "yes, you are right, things are not right, he is not engaging, you need to have him evaluated, I am worried about him, I am worried about you and Jay".

I imagine it was the hardest thing she ever had to tell me.

I asked more questions - "What do you think is happening?" - "Why?"

She said - "I am sure he is not, but some of what he displays is characteristic of autism."

I can honestly tell you that somewhere in me knew. It was so hard to hear that someone else saw his differences but at the same time, I knew that eventually someone would.

I remember that conversation clear as day. I remember that night, both Jay and I crying, being so scared and feeling so powerless.

The very next day we started our journey. Doctor appointment after doctor appointment lead the way to where we are now.

The word Autism scared me to death. It is only until recently that I can honestly speak of it without feeling sick.

She did not want to have to tell me. She did it because she loves me and loves my family. She did it because she is my sister and that is just what you do.

I am scared to think of what our life would be like had she not had to be so honest. In so many ways, I will forever be grateful for her loving us enough to have the hardest talk.

Thank you Amiee for your love, support and constant ear. We love you very much!

FAQ

Below are some questions and answers that I have copied and pasted from a great website called Autism Speaks. It is an amazing site with lots of resources. They have recently added a video series which is very helpful in listengin to and viewing the autistic characteristics verses just reading about them. I have taken some of the most important info from the site but if you are interested you can visit them at http://autismspeaks.org.


What is autism?

Autism, part of a group of disorders known as Autism Spectrum Disorders (ASD), is a complex neurobiological disorder that typically lasts throughout a person's lifetime. The disorder is characterized by varying degrees of impairment in communication skills and social abilities, and also by repetitive behaviors. Symptoms range from mild to severe. One milder form of the disorder is known as Asperger Syndrome. Other developmental disorders that fall under the Autism Spectrum Disorders are Rett Syndrome, PDD NOS (Pervasive Developmental Disorder), and Childhood Disintegrative Disorder. Parents are usually the first to notice unusual behaviors in their child or their child's failure to reach appropriate developmental milestones. Some parents describe a child that seemed different from birth, while others describe a child who was developing normally and then lost skills. If you have concerns about your child's development, don't wait: speak to your pediatrician about getting your child screened for autism.

What does it mean to be “on the spectrum”?

Autism is a spectrum disorder, which means it manifests itself in many different forms. A diagnosis can range from mild to severe, and though children who have it (i.e. are on the spectrum) are likely to exhibit similar traits, they're also as individual as the colors of a rainbow, each one managing a grab bag of symptoms. While one child may rarely speak and have difficulty learning how to read and write, another can be so high-functioning he's able to attend classes in a mainstream school. Yet another child may be so sensitive to the feel of fabric that all tags must be cut off before he wears a piece of clothing, while his friend who's also autistic may not have any sensory issues at all.

How can I tell if a child is autistic?

No two autistic kids are alike, but there are some signs that many of them share and that experts agree may be as recognizable as early as the toddler years, or even sooner. Children on the spectrum generally have difficulty relating to others; they may hardly speak, and if they do, they may not communicate in ways that other people can easily understand (they may screech loudly when they're upset, for example, instead of crying). They don't usually sustain eye contact – it's too intense -- and have trouble reading social cues. They're also prone to repetitive behaviors, flapping their hands constantly or uttering the same phrase over and over again. They may also be more sensitive than typically developing children, or dramatically less so, to sights, sounds and touch.

What should I do if I suspect something is wrong with my child?

Don't wait--talk to your doctor about getting child screened for autism. New research shows that children as young as one may exhibit signs of autism, so recognizing early signs and knowing developmental milestones is important. Early intervention is key.

How do I get my child the help he needs?

You can start by making sure he has a reputable healthcare team by his side. That means finding doctors, therapists, psychologists and teachers who understand and have experience with autism and can respond to his shifting needs appropriately. Ask your child's pediatrician to recommend a developmental pediatrician with whom you can consult about the next step. She, in turn, can guide you toward various intervention programs and suggest complementary therapies. It also helps to plug into an already existing network of parents facing the same challenges as you.