Another doctor visit

This one was an appointment made by me; no emergencies. I took Nick to the tummy doctor in hopes they could possibly shed a little light on his mushy stools. I had hoped that the chunkier food would firm them up a little bit, and it did for a while. But we are now back to mushy and I was just trying to figure out why. He had also had quite a few days with horrible behaviors-so I was wanting to get to the bottom of it. Well, I got Nick to the waiting room with no tantrums-so I was quite happy. He screamed bloody murder when it was time to weigh him, and was not liking all the noise in the little room we were in. After getting him weighed, I decided to tell the nurse that he was autistic and that's why he was acting the way he was. She smiled, and told me "I know. He has all the signs. We will just do what we can, ok?" After she got all his vitals(this took a while-he was barely cooperative), it was time to see the Doc.

I explained to him my concerns about wanting to make sure Nick was digesting all the nutrients in his food properly, make sure we were not missing anything in this puzzle. He asked me questions like "Is he allergic to anything", "What kinds of food does he eat?", "How many times a day does he poop?". I explained that he eats babyfood due to texture aversions, but we are moving towards chunkier foods. He felt Nick's tummy, and looked him over real good. He then went and consulted with his boss, and then they both came in. The other doctor looked at Nick and asked me questions as well. Between the both of them, they told me that since Nick has gained weight, and shows no visible signs of food allergies or digestion problems, they said he was perfectly healthy. I am not sure what to think about this. I am glad that they say he is healthy. In fact, I have been told that he is "Too healthy". I still wonder if he has digestion issues that cannot be seen? We are going to limit his dairy intake(no yogurt), and watch his gluten intake as well. Just maybe, it will help with some things.

Needless to say it is getting a little tiring taking him to these "-ists" only to be told he is perfectly fine. I took him to the nutritionist who said he was "too healthy for this clinic". I took him to the "feeding clinic" at this hospital as well, only to be told "Wow, he is a tough cookie. You might want to try another clinic", and "have you seen our nutritionist?". Now, the gastro doctor says the same thing. How can he not have issues when he goes from firm stools to mushy, then to loose all in one day?? He went weeks with normal stools, now we are back to square one?

I went shopping today and bought him NO Foods with wheat flour, or other forms of gluten in them. He got NO yogurt. I printed out a list from the internet of babyfoods that do not have gluten in them-and he is getting those only. We will see what happens.

Tomorrow is our walk for autism! I just wanted to say THANK YOU to those who donated! Our team raised $580 for autism research!! YAY!!

Peaks and valleys....

Just when I thought his head banging days were behind him, he starts it up again. I lay in bed yesterday morning, mind racing with all that needed to be done to get the four of us to Michael's soccer game at 11am. The silence of the early morning was suddenly interrupted by a loud screaming protest from Nick. "AAAAAAAHHHHH!" followed by a BANG! Nick had found the nearest wall to which to take out his frustrations. What a great way to start the day I thought. I got up and meandered down the hallway to the kitchen. It was going to be one of "Those" days already. I got both the boys something to eat, and then started preparing Nick verbally about what was going to happen that day. "Nick, we have to get dressed and go to Michael's soccer game" I told him as he yelled at me on the way to his bedroom. He did not want to get dressed this early in the morning. We managed to get everyone ready and out the door by 10:30.

Nick is fine until half time when suddenly 13 kids come off the field and gather around us for snacks....he gets visibly uncomfortable at all the commotion and starts crying. No other thing to do than just to deal with the crying while everyone looks at me as if to say "Aren't you going to soothe your child? Why is he crying?"
Somedays I just go around wondering "What is going on with this kid today?" After weeks of reprieve from head banging, he is now doing it again. He was stimming for most of the day, and when I tried to get him engaged with me, he persisted with throwing things to the floor, and just not paying attention at all. All he wanted to do was flick switches, open/close doors, and wander around with a blanket on his head. My whole day was pretty much spent keeping my frustration under control. I just kept thinking "Just.......QUIT.....with.....the....stims...I can't take it anymore!" I spent most of our session together just trying to reach him. What the heck happened??!! I am usually able to get eye contact from him when he is focused, but yesterday he was all over the place. I had to grab him and MAKE him look at me-once he did that, he would speak, or do something else I wanted.

Last night after he ate his dinner, I decided once again to give him the CLO. I stopped for a while because I was not sure if it was having any effect on him. Today, he was completely different.

He started the day off with coming to get me to play with him while I was in the kitchen. After playing for a few minutes, I went back to doing dishes. He came up to me, stood beside me, and said "Gimme Hug" in his quiet, Nicholas voice. Today, he managed to say several phrases appropriately...
"All Done" while I was playing with him
"Stop it" to Michael in the car
"No bed" when I put him in a "time out" of sorts after banging his head.

Somedays I feel like maybe we are not doing enough for him. Others I feel like we are doing just fine. We have switched him to powdered milk, started back with our CLO and vitamin supplements, work with him everyday on the most simple of tasks, send him to pre-school, and try to get him de-sensitized to table foods. I found some old pictures of Nick last night when he was a baby, and actually EATING...more solid foods than he does now...

Nick-11 mos old; eating a biscuit


Look at that! My baby eating crackers and cheerios!

SSI Update...and trying something new!

Yesterday I had the day off from work, and I took advantage of it. I woke up early and got the boys ready for school. For Michael, this was a nice change and he loved that mommy would be driving him to school. For Nick, this was an unwanted change in schedule. He did not like the light turned on in their bedroom, and protested by covering his eyes and crying. This was a major upheavel as far as he was concerned! I was shocked that he managed to eat some breakfast, because he refused his cup. We got everyone shoes, jackets, back-packs, and we were ready to go out the door. We left the house with Nick carrying a comforter(he screamed when I took it--so what the hell??)Of course, I must add that before all of this I had to catch him as he ran at top speed out the door and straight for the road.

By 8 am both boys were in their respective schools and ready to start the day. I came back home, did a little housecleaning, and then had to get everything ready for my appointment with the Social Security people to see if we qualify for SSI. I had to bring bank account statements from July to Sept., Mike's Life Insurance POlicy, and Pay stubs from both of us from July to now. For once in my life, I actually HAD everything! I never imagined myself waiting in line for government help; much less have a CHILD who would have a qualifying condition. But; life did not ask me for what I wanted. I was given some paperwork to have Mike sign and mail back to them-so hopefully Nick can start getting some extra help. It may not be much, but it will be something.

This evening I thought I would try some different food with Nick. I washed out one of the baby food jars and put some of the Gerber Toddler Meals in it. It was a beef and stars dinner with green beans. I mixed in a couple of green beans with the noodles, just to see if he could eat it. Success! We had a few instances where he gagged, but instead of giving up, he kept on eating it. I was so proud of him! How hard must it be to eat even the simplest things when you are sensitive to food textures??! I applaud him for giving it his all-he works so hard every day. He amazes me. He has been off of whole milk for almost a month-and has been drinking the powdered stuff without looking back! He has made some huge gains in the last month. Hard to tell if it is school, or milk related, but we are singing joyous praises over here! Nick answered his first question at school, and even told his teacher "Thank you" with no prompts! BIG CHANGES!

WALK NOW

ON OCTOBER 13TH WE WILL BE WALKING IN THE WALKNOW EVENT IN SEATTLE FOR THE CURE AUTISM NOW FOUNDATION. IF YOU WOULD LIKE TO DONATE; CLICK ON NICHOLAS

Two sides of Nicholas

Apparently Nick had a bad day at school today. Even the bus driver had heard of Nick's horrible day and attempted to appease him with her flashlight. That worked wonders, of course until it was time for him to get off the bus and give it back. The ensued screaming could be heard from inside the house-ahhhh, Nick was home. The school has started writing daily notes about his day and sending it home with him. Todays note was very interesting to say the least. Made for a humorous read. Here is what it says: Today in centers I: Helped with blocksgoing good so far We read a story called: Guess how much I love you ok For Group activity we: Had Speech NOTES: Here's the kicker Very Emotional day-haven't seen him get so upset before!One of two things can be envisioned here. Usually involves an object being hurled Did not want to give up activitiesYou don't say? It was cute and a learning experience!Yes, I am SURE it was! Nick has shown us another side as well. He is making some pretty big leaps in development--rather quickly! He has started to put words together to request things!! This week alone he has: Pulled Mike by the hand to the fridge, made him open it, and Nick put his hand on the applesauce and said "applesauce". He has also done this with MIlk,yogurt, and fish crackers. Today he pulled Mike by the hand and said "Up please,light on" That's FOUR words....together!!! I also got this on video a couple of nights ago:

SSI

We got a letter in the mail today regarding SSI for Nick. We have to be at the Social Security office on the 28th to meet with a representative. We have to get pay stubs from July 07 until now, along with a few other items. I am hoping we get it-we could use the extra money for some of his things. We also recieved a statement from UW about the cost of his therapy for the past 30 days....over $1,000 worth. How do people even afford this stuff? It is completely ludicrous. These therapies SHOULD be available to anyone. I think it is a tragedy that everything is different depending on WHERE you live. South Carolina is planning to pass a bill that gives FREE ABA therapy until children reach a certain age(5 I think). There WERE two centers near us that provided everything he needed AND took our insurance...what happened? They closed down. It is a frightening realization that many families are depleting their savings and going bankrupt just to get their child the therapies they need. What is our alternative?? To let our kids slowly disappear into a world that they themselves only occupy?? Why should we have to fight school systems tooth and nail to give these kids what they need?? Is it because many people still think autism=retarded..and therefor only worth teaching the basics? Or because we give such little consideration to people who cannot talk? How many times have you come across someone who perhaps had trouble speaking and automatically assumed that he/she was retarded or stupid? I can tell you that I will never,ever think that again. Always assume intelligence. Nick has introduced a lot of people to the true wonders and gifts that those with autism have. Somedays I think we learn more from him than he does from us.

S.W.I.M.

I got an e-mail today from one of the people who is involved with the Exceptional Family Member Program(EFMP)saying that there was an aquatic class/therapy for kids with special needs. I called the number that was attached and they take autistic kids! It is offered through the YMCA in Tacoma, and costs only $29 per month! The class is on Saturdays; so I would have to wait until soccer season is over. It would be from 9-12pm and it would also serve as a form of physical therapy. YES!! I will be signing Nick up for that starting in Oct.

He is doing good so far in pre-school. They send home notes everyday explaining what they worked on. I am hoping he gets more out of going this year than he did last year.

I am also in the process of switching Nick from whole milk, to the powdered stuff. He went through milk like crazy, and so far with the new stuff he does not drink half as much as he did.

In Memory of Sept 11th

Organization is key...

At least to Nick anyway. This is how we found his "classroom" this morning after he had been in there for a little while. Notice the geometric shapes made with the balls and the baskets..

We are Home....

We had a wonderful time visiting with our close friends in Spokane! We left our house around 2pm on Friday afternoon, and arrived in Spokane around 7pm that night. Michael and his friend N started playing right away! It was like they had never been apart. We talked for a little while and then went out to eat at Taco Bell. We basically took over the joint with the eight of us. We checked in to our hotel around 11pm and got settled. I had hoped to put a little distance between me, and our world of autism. I was trying to put it in the very back of my mind for just a few days. Well, it looked good for us on the first night there; except for some minor crying at the hotel that night upon check-in.

Saturday was completely different. It started off in the morning when I had to shower in the dark. Why you ask?? Because when I turned on the bathroom light it also turned the fan on. Nick screamed like no tomorrow. He was completely out of sorts for most of the day. One day maybe we will realize that one of the hallmark symptoms of autism is the need for routine??!! It took Nick a little while to get into the swing of things, and in the meantime he was Mr Grouchy. Nick totally loved playing peek-a-boo with their daughter. It was simply the cutest and sweetest thing. I told her she could babysit Nick any time. Saturday evening we all took the kids out for ice-cream at Maggie-Moo's. We all had some absolute splendor! I suggest Cake Batter with Cookie Dough :) Michael had a huge chocolate shake with whipped cream, and Mike had some Butter Pecan with Cotton Candy. After everyone was high on sugar; we went to the skating rink to let the kids skate. Michael had an absolute wonderful time!! Nick had a great time playing with the steering wheels on the video games-it was fine until he started getting a bit irritated with the noise. Thankfully, by that time the kids had skated enough and we turned in for the night.

Sunday was just a day of hanging out. Michael had spent the night Sat. and we celebrated their little girl's 10th birthday. We watched "Blades of Glory"(funny movie I might add!) and had some pizza and cake. We were very sad to leave on Monday. We had such a great time. (You're not getting rid of us yet guys!!Next year!)

This week the agenda is Back to School! I met Michael's teacher today. His new classroom is right across the hall from his old one. He starts 3rd grade tomorrow at 8am sharp! Wish Daddy luck :)

Have a Great Weekend!

We are spending the weekend with our friends in Spokane. We plan to leave this afternoon, and we already have reservations at a hotel. Some much needed time away. Hope everyone has a great weekend! See you next week...

Ups and Downs....

It has been a while since my last update! Do not fear, we are all doing just fine; just very busy! Summer is coming to a close, and I have two growing boys who outgrew their clothes!! Last weekend I decided to plunge head first in their wardrobes and get rid of stuff that was too small. I admit to getting a little teary eyed as I dug through Nick's dresser. He is my "baby" and it was hard throwing out some of those cute little short sets. Who said he could grow??? I filled up two garbage bags and headed down to the recycle center to drop them off.

After that, Michael was in desperate need of some new clothes for school. Otherwise he might just start the first day in undies! I packed Nick up and we went shopping. Sunday we made another trip to Wal-Mart and then the Commissary. For the first time, Nick did not tolerate the commissary. There were a lot more people than usual, the PA system kept going off, and the noise level was more than he could bear. He was covering his ears and screaming by the third aisle. I decided to abort my trip and take him home. I left my cart, and carried him out of the store. I went back after dropping him off with daddy; but I did miss my little Bubby.

Michael started soccer on Monday. Our practices are on Mondays and Wednesdays at 4:30pm. He is doing pretty good. He is not too much shorter than the other kids now. Nick of course was happy to just run in circles and feel the grass. A couple of kids around his age tried to get his attention, but he just clicked his tongue and walked off leaving them rather confused. They don't know what to make of him yet. I get a little sad for a few minutes, but it tends to pass quicker now than it used to. We are proud of all he has accomplished so far, and for things he will accomplish in the future. He is such a gentle soul, and an absolutely delightful little boy.

Last night as I was putting the boys to bed, Nick grabbed Michaels hand and put it on his belly. He then looked right at Michael and said "Tickle" with a smile on his face. Today, we went to our Wing Picnic and the boys had fun watching the Soap Box Derby. We are all pretty tired, so I will end this update for now. We are all enjoying the last few days of summer with them before school starts again!

A Very Stimmy Two Days.....

UGH! This is sometimes the worst part of dealing with Nick. Dealing with his stims. The past two days have really frazzled my brain. The constant sounds of the remotes being twirled against the walls, clicking his tongue endlessly, constantly wanting to turn the light on the ceiling fan on/off/and on again, twirling toys, spinning them on the coffee table, twirling his hands in front of his face, toe-walking, lining things up vertically. I think I said all the things he has been doing in earnest the past two days. I know why he has been this way. Michael has had soccer camp the past two days and Nick has been around more people than I am sure he cares to. It is a disruption in his schedule, and we pay the price with his constant stimming. Yesterday was awful. He was trying to stand up part of the portable A/C vertically on the bunk bed. It was not working right and he was screaming. I went into the room thinking something surely awful had happened to him(that's how loud his screaming was) only to find him getting irate and waving the part around(the long piece that goes in the window-hard plastic) and I immediately knew where this was going! Sure enough, he had that wild look in his eyes(the I'M OUT OF CONTROL look) and before I knew it, that object was ejected into the air-and landed right on my foot! Holy SH*T that hurt!! I managed to keep my composure and for that I am thankful. I grabbed it, and put it up someplace very high where little man cannot reach. Needless to say, the top of my foot has a decent size bruise. Today has been physically less painful,but mentally exhausting as I keep removing things from the house(the baby gate is outside-one day of standing it up and knocking it down 500 times will do that!)or Nick's reach.

Sunday we went out to eat at a place called Shari's. Nick was having a good day and was happily munching on some french fries. I was amazed he was eating these because they were bigger fries and they had the skins still on. He was quite verbal, and happily jumping on the seat. We were happy to have this smidgeon of time where Nick is doing what every other kid his age does. So maybe we were not totally ready to tell him to "Stop it!". Well, the man in the booth next to ours was seemingly annoyed with Nick's jumping and peering over the makeshift wall. He stood up and said to us "Can you PLEASE make him STOP that until after I eat??!" My mouth said "Yes Sir. We will try." But my head was screaming "Are you kidding me??!! This is the most NORMAL thing he has done ALL DAY...I am not ready for him to STOP. You have no idea what it takes for him to do things like this!!" Regular people will just never understand. We need places just for autie kids and their parents. A place where they won't be judged or told to "STOP IT!"

What's This?

We have been working on this for about 2 weeks now. We showed him the flashcard, got him to point, asked "What's This?" hundreds of times...and he echoed hundreds of times. Not today. I got the card out, Nick sat in the chair, pointed, and asked "What's this?" all by himself! He finished the deck of flash cards, and we started a second time with the video camera ON! What you see here is the result...If he can ask a question, he can learn anything.

The Window....

The object of Nicks' fascination....in which everything must be vertical....

Progress at last!

Nick has made great strides ahead this week! He is now matching pictures with great accuracy-and he has only been doing this for a few days!! We also work with him on labeling. We have started with animals, and that seems to be going well. Mike is getting in on our little sessions as he was amazed with Nick's voice actually speaking! We play the "What's This?" game. I hold up a card with an animal on it and ask "What's this?" Nick points to the card and echoes the question. I then say the name of the animal and he will then say it. Today we threw in a flip-book with different pictures in it-and went through the whole book with him.

Today he also ate a WHOLE jar of Del Monte Stage 3 Chicken soup dinner!!! He actually CHEWED the little bits of noodles and veggies! I was amazed!!

Last night Mike went to go check on the boys before heading to bed. He went into the room and saw that Nick was not in his bed. He found him sitting on Michael's bed looking out the window. Mike asked him "Nick; what are you doing?" Nick looked right at him and softly said "window" and then looked back. Mike was so stunned that he came and immediately told me the story. It was like we had won the lottery. Tears of pride welled up for my little guy. Today, Mike asked Nick if he wanted to be lifted up--and Nick responded with a simple "No". We have never been so overjoyed to hear "No" in our lives =) We are loving every minute of this!

This is NOT how I pictured my Life.....

As I sat at the table last night eating dinner, I was able to steal a few minutes to reflect on our lives in the last 10 years. I have to say "Our" lives because I am sure this is not what Mike pictured either.

When I dreamed of what my family would be like when I was little, I always dreamed of two happy, playful, energetic boys. They would be tall, dark haired, brown eyes, would do perfect in school, and life would just be wonderful. Apparently, I left too much to be determined by the man upstairs.

When Michael was born, part of my dream had come true. There he was, all pink and full of baby chubbyness, all ten fingers, ten toes, what more could we want? After only one year, Michael had gone from being in the 50% tiles, to being in the 5th for growth. We spent the next 5 years going to a endocrineologist, having bone scans, taking measurements, trying to figure out what was going on. In between visits was a nightmare of trying to get him to eat and put on weight. People would ask "Why is he so small?" and all we could do was just shrug our shoulders. After 5 years, we finally had an answer. Growth Hormone Deficiency. He was put on treatment, and we were relieved that it was something "fixable". Our lives were back on track.

By this time Nick had been born, and he was growing just fine. He was 50-60% since the day he was born, and has not looked back. From day one he was completely different from Michael. Compared to Michael, Nick just seemed like a blob. By one year, I had a little voice in the back of my head that something just did not seem "right". Nick was lagging behind it seemed. He liked to spin wheels, but then again babies will all find stuff like that. He entered daycare at around 14mos and things just got worse. He walked late, was not responding to his name despite his hearing being normal, ate nothing but bread and applesauce, refused to sit with the other kids at meal times, and was often playing by himself in a corner somewhere. At two years old, he was diagnosed with autism. Another detour. This one is a big one. Daily life can be a struggle. Finding services for him has been an even bigger struggle. His behaviors can be devastating. He has put two holes in our walls from head banging, and many more dents.


He needs intensive speech, occupational, physical, and behavior therapies just to get him to a functional level. We don't care about college, we just want FUNCTIONAL. His senses overload him, he cannot break through his wall to talk, he struggles with texture issues, all the things that we take for granted are such hard work for him. Yet, the sweet moments are extra rewarding. When he says "Cow" while looking at a bird, or gets gutsy enough to climb UP a slide, do I say anything? Hell NO! It takes so much for him to do these things, and he is so proud of himself when he does them. All of this, and yet I would not trade it for anything. Maybe the man upstairs knew what he was doing afterall.

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Mommy and Me time!

Monday was a nice day outside, so I took the boys to the zoo for some fun. Michael had a great time, and as far as I could tell, Nick seemed to like it as well. He was not too interested in the animals, but he seemed to really like the fish in the aquarium. Some areas just were not his faves though. The whale show was difficult for him. With all the people crowded around us he started to lose it. Michael got to see the show, but Nick was happier strapped in his stroller in back of the crowds. We had a couple of meltdowns-but they were easily controlled, so it turned out pretty nice.

I applied for SSI for Nick. We find out Aug 3 if we will get it. This would mean extra money for his therapies, or other supplies he needs. I also got the referral from our insurance to cover $2500 month for ABA therapy, as well as going to the University of Wa. He is still on the list for Speech and Oral motor therapies.

Friday we had our first appt. at U.W. It was basically a "get-to-know-you" session. She asked me a lot of questions regarding Nick, and then proceeded to work with him a little bit. He did pretty good with matching objects, and puzzles. As well as asking for more crackers. She told me to write down every time he bangs his head or hits himself so that we can figure out what is causing him to do that, and we can teach him a more appropriate behavior. Since Friday, we have already used up one sheet of paper that she gave us. We still have 5 more days to go!

Today, I worked with Nick a bit on labeling animals. We used flash cards that had what the animal felt like on them. I held up the card and asked "what is this?" and then moved his hand over the patch of fur, or material, and said the name of the animal on the card. He then repeated the name after I said it, and he was rewarded with playing with a toy for a minute. We repeated this drill twice-and went through all the flash cards. I am now searching to find him a therapist this next week of my vacation. I would do it in a heart-beat if I did not have to work. I know Mike would do it if he had to, but he is not the kind of person to just sit at a table or in a room for the day. He would much rather have Nick out and about in the real-world...which is good too. He would do it if we can't find someone, but I think it would just be easier to have someone else here.

A Day at the Mall

Seeing is Believing!! Here is the PROOF that Nick is back to eating french fries!!


And yes, I was the overzealous mom taking pictures of her kids eating french fries. You would too if every piece of table food was a struggle for your little guy. I am so proud of Nick for this seemingly small victory. We would serve up french fries everyday if it would not harden our arteries!

Today we again went to the play area in the mall. Nick learned to climb through the little tunnel, and ALMOST went down the little slide by himself. The steps are a little small and steep, so he ended up backing down at the last minute. Michael was right behind him to make sure he did not fall-what a lovely big brother. We did have a couple of instances where Nick hit another kid-and I was quick to tell him NO! and we went up to the little boy and apologized. I showed Nick that we be "nice" to other kids by taking his hand and patting the boy GENTLY on the arm. After a few minutes of letting Nick play on the seat with me, I took him over to one of the other climbing things(it was a little pig) and he practiced climbing on that for a little bit.

Monday we have a trip to the zoo planned, and the rest of the week will be devoted to checking into SSI, and scouting around for a private therapist. Thursday we have our first appt. with UW. Wish us luck!!

Silly Talk...Silly Dance....Silly BOY!

Nick engages in these things almost on a daily basis; and you know what?? I LOVE it! Sure Nick says non-sense words that nobody understands; but when he is saying them he is usually HAPPY! Yesterday Nick and Michael went on a banter of "eeeeellloww" back and forth. Nick has quite a few words that we just don't understand. He says them clearly(and loudly I might add). Some of them are: "Aya", "Dee-nee-nee","eeellow", and a humming sound. The humming is almost like he is imitating a machine of some sort. It is very precise, and is usually accompanied by some sort of action from Nick; i.e. moving his arm up and down. We have been trying to think of what this might be, and the only thing we could think of is the sound of the garbage truck that comes every week.

Even though they are more than likely just some vocal stimming that kids with ASD will do, it is still a way to connect with him and it can be fun at times to hear his little diddies throughout the house.