Thursday, December 23, 2010

Merry Christmas!!!

Somedays you just need to play a little 'hookie'! The boys have been out of school since last Friday, but Nick has had therapy for the last few days. It is a juggle that I still find myself torn between. He can always use therapy, and he has made a lot of progess with it being 5 days a week now. So, during breaks such as this from school, I am always eager to sign him up for more hours to fill in the void. It helps control his anxiety during the break because we still have a schedule. But, somedays he just needs to be a kid. Today was one of those days. He had been going through 'zamboni withdrawals' for the last few weeks.With his busy therapy schedule, he is not able to come to hockey practice during the week to see the zamboni clean the ice. Today I called his afternoon therapist and told her we would like to take a day off. Nick needed a day just to be a kid. And it was hard to turn him down since our 'conversation' this morning revolved around the zamboni...
We went skating today around 2pm and both kiddos now fly across the ice. We all had a great time. Nick had a huge smile on his face. It was so worth the funk he is in right now for that hour! Yes, we are dealing with the fallout from all the upheaval today. Anytime we change his schedule, no matter how small, he gets a little funky. He is in his room now hanging out and calming himself down. It will be a low key night. We are getting ready to eat dinner, then it is bath time, and then bed time for Nick. After he is in bed, I am going to bake some holiday cookies with Michael. Nick does not get much out of baking yet, so it will be just me and Michael. Gives us something to do together. Tomorrow our big plans are to go see the holiday lights at the park and wait for Santa. Maybe watch some more holiday movies, and of course wait for the fire engines to come through the neighborhood and pass out candy. Hope everyone has a Merry Christmas!

Monday, December 13, 2010

The Great Flood.....

And no, I am not talking about the current weather situation here in the NW. Let me explain what happened on Saturday.

*I get up at 7am. See Michael on the computer. I ask Michael if Nick is up yet. He says no.

* Nick gets up as soon as he hears my voice and wanders into the dining room. I change him, give him milk, and make his regular breakfast of two waffles. He eats.

* Hubby gets up and tells me I can go back to sleep if I want...cause he's got this. I lie in the living room and fall asleep. Big mistake. Through my slumber I vaguely remember Nick coming to me for various things. I tell him "go ask Daddy". I fall back asleep. Mike is on the computer. It has been a quiet morning.

* I wake up. It is too quiet. I go on a search for Nicholas and find him in his room. He tells me "goodnight". I leave. Mike goes in a few minutes later. Nick is somewhere else now. We look for him in our room. No Nick...but Mike yells for me to come there immediately. I am fearing the worst at this point.

* Nick had been in our bathroom. Obviously this happened some time ago--judging from the amount of water that was pouring out of the sink and on to the floor. Everything was soaked! Including the carpet in our hallway! We used every single towel we had available, mopped up the water, and soaked up the water in the hallway.....soak, wring, dry towels. Lather, rinse, repeat. All weekend long. No wonder Nick was hiding out in his brother's room!!

-It's OFFICIAL: BOTH of our kids have completely flooded the bathroom now. Whew! That monkey is now off my back.LOL!

Sunday, December 05, 2010

A Look into Nick's World...and Ours...

There is really no other way to describe exactly how Nick's autism is. You just have to see it for yourself. This is what happens daily in our house. Thanks to Risperidone, you won't see the OTHER side of Nick that was known to happen a few months ago. This is the more 'controllable' Nick...although I can use that term a little LOOSELY, because his behaviors are not really screaming 'controllable'. We have therapists at our house five-six days a week working with him. For three hours after school. Bascially, he goes to six hours of school-gets home at 3pm. At 3:30 he starts working with either Tracy, Scott, or Stephanie...depending on the day. He also gets Hippotherapy, Speech therapy, and Occupational therapy. This is the reality of his disability. People think he is a normal six year old because of his outward appearance. Then he starts to do some of his vocal stims in public. Or he runs away to slam doors, opens gas tanks on cars, hits things..etc. Then they assume it is just a "discipline problem" and that they know how to "fix" it. They stare. This is autism. Please, if you see a kid like this in a store or another place, be nice. Be understanding. Do NOT presume that the kid you see is "normal". This is a side of autism that is not shown on any talk show, and does not come with those success stories about 'recovery'.



Sunday, November 28, 2010

Thanksgiving......

Hope you all had a nice turkey day! We had a very relaxing one. My dad came up to visit for a few days and the boys loved it. Sunday it started snowing and that continued through Monday night. Monday I left to pick up my dad around noon and it was not that bad out. By the time we got back to the house around 2pm, it was snowing again and the wind had started blowing. I went back to work only to discover that everyone had been let go early-due to weather. That evening we had the earliest snow storm that I remember since moving here. The winds were blowing like crazy and the snow was coming down pretty fast. Of course I decided to take Dad and Michael out to get pizza right in the thick of things. Nick was still working with his tutors at that time, so Mike opted to stay home. On the way to pizza hut we saw numerous cars spin out, and were kind of laughing at their expense. One of them was trying to pull an empty trailer up the overpass....not a good idea. Anyway, we made it safely and ate our pizza in the comfort of our dining room. School was closed the rest of the week, so grandpa got to spend ample time hanging out with his little men.
Which also means that he got to experience life with Nick.

On Tuesday we were all set to go to hockey practice with Michael, but it turned out the rink was closed. We did not find out until we had driven to the rink-and Nick was not happy that we had to turn around. He cried because we did not go skating-then he cried as we pulled away from the house to go eat. We instead went to IHOP where we were pretty much the only customers there. Nothing like a plate full of pancakes to win over this brood..LOL!

Wednesday all the boys went shopping for some clothes for grandpa. He had only come with shorts and short sleeved shirts-and it was 32f outside. They also picked up a ham to cook for the big day.

Thursday we lounged around most of the day and watched movies. Holiday movies like Planes,Trains, and Automobiles, and Christmas Vacation. Nothing like a good comedy enjoyed by the entire family. Thursday afternoon we started the ham and three hours later we were enjoying some good food as well as good company.

Friday morning I got up to take Dad to the airport. The snow was all gone by this point and it was raining. It was back to normal. Nick had his chiropractor appt, but other than that, we had nothing planned. It was a pretty laid back week. Tomorrow starts the daily grind again.

Tuesday, November 16, 2010

School Closed!

I was so looking forward to a day off with no children! Hubby and I were making plans to go and see a movie...ANY movie. Just one without kids. Well, that plan was shot to hell at 5am this morning when the school called and said "Due to numerous power outages around the area, there will be NO SCHOOL TODAY." Ok, Ok, so it was a little windy out last night and our power did go out for a bit. But seriously?? I find it humorous that *I* am expected to make it to work after last night, but teachers can't?? I have not seen anywhere any reports on my two lovely boys' schools being damaged, and our power was back on before 5am. I am willing to bet their schools fared just fine and they could have gone. Instead, I got to deal with two boys getting on each others' nerves ALL DAY LONG, and taking Little Mister to the grocery store with me...which was jam packed I might add. Ugh! That was another thing I had not planned on doing...see where this day went?? Is this a sign of the next three months to come?? I am going to need a bigger tub of ice cream.

Sunday, November 14, 2010

Days are Short, and Nights are Long....

Well, after my last post things got pretty hectic and busy at work. We were basically putting in 18-19 hour days-with little rest in between. We also worked 10 days straight. I missed so much during those 10 days...hockey practices, skating practices, chiropractor visits, and tutor sessions. I also missed a hockey game and just the general goings on around here. Let me see if I can catch you all up. Thursday everyone was off school and work for Veterans Day. It was soooo nice not to have to get up and rush everywhere. We all just kind of lounged around the house until it was time for Nick's therapist to come by. Mike took Michael to hockey practice at 6pm while I stayed home to cook dinner, and wait for Nick to be done with therapy.

Friday morning it was back to school for Michael and we had to be at hippotherapy at 10 am...which meant I had to leave at nine.

I still think this is one of the best therapies we have done. It is so cool to just watch him ride the horse. He does not stim the entire time, and absolutely loves it! That afternoon we also had his chiropractor visit, and I noticed that Nick sat completely still the entire adjustment. That is something he has never done...even the Dr was wowed. Friday night we did much of the same-relaxed around the house. Saturday we had another visit from Nick's therapist. She stayed for three hours and worked with Nick. I admit, it is sometimes nice to have them here. They can keep him entertained and engaged which gives me time to clean the house a bit. After that, it was time to head out to Michael's hockey game. The Spitfires WON! 3-1. It would have been 4-1 if they had counted the goal Michael made in the first three minutes!! Grrrr! Today we were all completely lazy all day...and it was grand! With that, I leave you all (esp. family back east) with a photo timeline of just how soon the sun sets here now. This is not even what it will be come late December. Then it will be even earlier.


3:15pm

4:30pm

4:45pm

5pm

The view by 5:15pm.

And on the flip side we have summers...where the sun does not set until after 9pm and greets us around 4am!

Thursday, November 04, 2010

Dr. Appointment...

Well they say it is either a hernia or hydrocele. More likely a hernia. We have an ultrasound scheduled for the 15th, then a surgery consultation after that. Poor kiddo. He was most excellent today for the doc too!!

Monday, November 01, 2010

Weekend Wrap up...

What a fun weekend we had!! Saturday evening we got the boys dressed up in their costumes and went to the Halloween festivities at the ice rink. Nick was a clown and Michael was like an evil Jester. I had bought some makeup because Nick will not wear a mask, but was kind of nervous of how it would all go down. I imagined something out of the Exorcist. Turned out Nick only moderately detested the makeup-but instead of a clown, he ended up more or less looking like the smeared face of The Joker in the movie "The Dark Knight". Oh. Well. With Nick you just gotta pick your meltdowns. I mean the kid touches his face every minute of the day WITHOUT makeup-with the stuff is even worse.

Put skates on both of them and we got in a few laps before we heard the announcement'Will everyone who is entering the costume contest please come to the center of the rink'. Michael was a given-of course he will enter the contest. With Nick I debated with myself. I don't know why I still do this. He is a KID afterall! You might be thinking why would I even debate such a thing. Well Nick's autism prevents him from eating most of the candy, he gets very antsy around crowds, does not like to wait, and he cannot communicate a whole lot. My mind gets to thinking things like "Will he even enjoy this? Will he realize what is going on? Will he scream because it is taking too long?" Thank goodness I don't always think so 'logically' and end up throwing caution to the wind and saying 'Why Not?' This time I did just that. So, Nick and I stood in center ice with all of the other hopeful contestants. There was Michael the Jester, Iron Man, Spiderman, Dracula, 50's girl, cheerleader, a zombie, a rapper, and Nick the clown. Michael won the first award: "Scariest kid costume". A few other awards were given out "Most Original", "Best Adult Costume", etc. Then came "The award for Best Overall Costume goes to....The Clown"! I was shocked! I kept telling Nick "You WON Nick!" "You WON!" as we skated to pick up his prize. Mike informed me that as soon as the staff saw Nick they wanted to make sure he got something. That is what we love about the rink. They accept Nick completely. All his figure skaters congratulated him and told him how cute he was. They simply accept him. I don't know how much of all this gets in his head, but I hope some makes it in. So I give up on all the "What If's" and now say "Why Not??". Just go for it.

Last night was Halloween, and once again we were proven wrong by Nick. Michael had plans to go out with one of his friends-so it was just Nick, Mike, and Me. Going by previous years Nick would maybe make it down the block and back. Not this year! We dressed him up, gave him his treat bag (which he held the ENTIRE time on his own!) and headed out. Nick was into this. Although he needed some prompting to say "Trick or Treat" and held back from going INTO the houses, he did great! By the end of the night, he would run up to any house with the lights on and an open door...LOL!

In other news, I had to make an appointment for Nick today to get his testicles looked at. They had noticed years ago when he was dx'ed with autism that one of his testicles was larger than the other. This weekend however, it seemed very large. I know it may be nothing and it just might be an anomaly he was born with, but I know I will feel better getting it checked out. Michael had a hernia when he was little that presented itself in the same fashion. It was a simple repair, but still. I have a feeling it is a hernia though. I hope to be proven wrong on Wednesday.

Thursday, October 21, 2010

The Season of Change....

It has been a busy month in our neck of the woods. Hockey has started in full swing...so we are at the rink Tues, Wed, Thurs, Sat, and Sunday! We have also found Nick a new tutor who will be coming on Monday evenings, and Nick has hippotherapy and his chiropractor visits on Fridays. One of Nick's other tutors is also back to help us out and that schedule varies. Last weekend she came for about three hours each day, and she has come three days this week. It is nice to have the extra help..not going to lie. While Nick is being worked with I can actually get some stuff done around the house.

Last Friday was a big break through-Nick suddenly started hopping on one foot; albeit he was holding on to the gate, but he was still hopping! And he was even changing feet! I can't help but think that the sessions with the horse have helped in that area; along with possibly all the skating.

Nick's new tutor is a perfect match for him. We were interviewing him on Monday night with his BCBA and he was just so excited to hear what all Nick was doing! Big plus for ME is that he looks like Jake Gylenhaal...oh yes he does. I can handle that coming to my house every Monday for like three hours working with one of the coolest boys on the planet :) Just sayin'...

Michael brought home all A's and B's on his report card!! Love love love that boy of mine!! I also believe we have switched gears as far as girls are concerned. Ugh. Did not take them long to notice Michael. He came to us a few days ago asking how to tell if someone likes you. This has been heresay for a couple weeks now. Michael found out through the grapevine that this little girl likes him. And I think he also kinda likes her. We have just entered the whole next phase of this journey called Parenthood. How did this happen so fast?? I remember bringing that little 8 pound bundle home from the hospital like it was yesterday. Through years when he was not growing, not eating, and hearing for the first time he had GHD. We are six years out from hearing the final diagnosis, and we could not be prouder of him!

Tuesday, September 28, 2010

My NICK is BAAACK!!!

Yes Nick, you were still here; but you had a cold and you always seem to regress a little bit during your illnesses, so your mommy and daddy missed your little quips about the zamboni and the microwave.Simply because they were not there. Speech is much more limited when you are sick. I sure was glad when you started them up again today in full force. Mommy promises to take you to see the zamboni tomorrow-I felt bad today because you only asked for it about 100 times in the hour I was home. Sorry baby boy, we had to go to the chiropractor. I am glad you're back Nick-we sure did miss you :)

Monday, September 27, 2010

The Sweetest Thing.....

This amazing thing took place on Friday morning. Nick stayed home from school that day due to really because we did not know how he would take to this. It has made some kids dizzy, nauseous, etc. Plus, we were not sure how long it would take to get through everything such as paperwork, evals, etc. But, it was the most amazing therapy we have thought to try. And we saw results immediately. Even though this was a new experience for Nick, he was completely calm while riding. No stimming. At All. He was looking at people as they talked to him and doing what they asked. While riding the horse. It was beautiful to witness. He did it so naturally...not robotic. He was petting the horse, brushing him, telling him to go and stop, and before we left, he gave Yukon two big hugs and said Goodbye. The entire ride home he was calm and did not stim either. We are currently working with our insurance company and will provide them with progress reports to see if we can start getting this type of therapy covered. It was amazing. Enjoy the video. This type of therapy is called Hippotherapy. "Hippo" is the greek word for Horse. I will go more in depth later about its' uses for special needs kids and how it helps the vestibular system; but until then, just enjoy the video.

Friday, September 17, 2010

Nick...showing us all what we DON'T know about autism...

Never. Give. Up. Nothing is 'impossible'. Nicks' doctors and therapists never thought he would even like this, much less get out there and DO IT. You have to remember that this is a kid who does not even like the microwave being turned on..to think he would remotely tolerate a noisy ice rink, with lots of giggly teenagers, and the loud music...let's just say the odds were not in his favor. But, in true Nick fashion, he is proving us all wrong.

Sunday, September 05, 2010

What do you all think??

The Ice Rink

The ice skating rink is perhaps one of the last places you would expect to see a disabled child. But if you look closely, you will see him. He is the little boy standing just outside the rink with his two parents. You might notice that one of the parents always has a hold of this little boy, never letting him go. You notice he does not talk much, and does some strange things with his hands. They have been coming here for a couple of months now. Their oldest son is learning to play ice hockey, and coming to the rink has become a family affair for them. They all show their support; even the little guy. The little one has been watching all the kids skating at the rink-joyfully jumping up and down each time one of the figure skaters would spin in front of him. He loves watching them. His two parents smile at each other and then at him-for them, this is enough for now. You find yourself staring at this family, not out of happiness, but rather out of dismay. I have noticed your stares. That little boy you are staring at is mine.

On this day however, I am not going to let that bother me. We have decided to put ice skates on that little disabled boy. We have decided to let him be a part of the action. We get to the rink and get skates on. Although my little man seems to want to skate, this mom admits to being just slightly nervous about how it could all go down. We head out to the ice and carefully step on. I grab on to my sons’ hand and begin to lead him around the rink. We are met with his figure skater friends who have been twirling in front of him for weeks now. They both tell him how good he is doing, and even though he does not look at them, I can tell he is beyond happy. Nobody knows it, but this mom has a tear in her eye at this moment. You see, this is nothing short of a miracle. That little boy who is now ice skating with his mom is autistic.


This is the article I am thinking of submitting to Autism Today. I would like to hear your thoughts!

Last weekend of summer....






So, yesterday I had the day off from work and I thought I would run a few errands to prepare for school. The day was going just peachy until our 16yr old dog decided to leave a puddle as big as the Mississippi River in our hallway. I do believe some (ok, A LOT) of expletetives were used in the clean up process. Naturally these happened to be used in front of my now highly echolalic 6yr old...in which he promptly repeated to himself in his room. Shit! Now I have to deal with that too. Anyway, I get the boys dressed and ready to go. Mike is staying home to do the yard...as it resembles a jungle by now. I give Nick a brief run down of the day's events. First we will go to Michael's school, then we go to Nick's school, then we go to the store. Nick is fine with this, and things are going beautifully. Until...

We get to Michael's school. It is crowded with parents doing last minute things (like us) in a rush before the year starts. At his Open House last week we were told that he needed a Tdap shot before he could start school. No problem. I made the appointment, we went, and it turns out he didn't need it at all-so we got the paperwork from the nurse and I thought I would bring it to his school for his records. I am standing at the counter, restraining Nick with both hands to keep him from running away, and listening to the secretary tell me that Michael needed the Varicella vax and NOT the Tdap! WHAT??!! This would have been good to know like LAST WEEK! I mention something about good luck trying to get an appt. before school starts..and held my tongue. In my mind I am cursing up a storm, but outwardly I manage to be civil and even smile. Walk the boys back to the car, and head to Nick's school to get the list of school supplies. In the parking lot of the elementary school I call the appointment line on my cell phone and manage to get Michael one for the 13th of Sept. Oh well. That is the best I can do. Mike also calls me. He calls to tell me the weed eater blew up and that he would not be able to finish the yard. Ummm, I could care less about the yard right now sweety-my day has been de-railed, but I am guessing you are okay since you are calling me? By the way, Nick had decided to poop once we got in the car...so the backseat area was rather smelly, and I had to take smelly boy to the schools like that. I am pretty sure that by this point, I had that "Don't Fuck with Me" look on my face.

We get home to change smelly boy, eat a bit of lunch, and prepare for the major outing of our day. SCHOOL SHOPPING. I can honestly say that it was at risk for spiraling out of control. Michael did not like Nick even touching anything of his-so it was becoming quite the scream fest. I had enough. It is no use scolding Nick for screaming, so I grabbed a couple of notebooks with the 3D pictures on the front, and a happy child we had. We also had to buy new winter jackets, some more long sleeved shirts, and new shoes for both. During this time Nick managed to escape and was all the way at the front of the store before I could catch him. I noticed the stares as I was escorting him back to the family. I could care less. Let them fucking stare. My kid is smarter than yours...school supplies be damned!

Got home and divided up the supplies. They are all set, and we were worn out. Today was much better! We had our YMCA playgroup this afternoon, and got to talk with other special needs parents. What a joy! They held it in the gymnastics room and all the kids had a blast! Got some cool motion pictures of Nick and Michael. Enjoy!

Saturday, August 28, 2010

Fixed it!!

I finally fixed the blog! Now it is more appealing to look at...LOL!

Thursday, August 26, 2010

A Meltdown vs. A Tantrum

For anyone who has seen an autistic child have a meltdown, then you are aware of the drastic difference. For those that have not, I will do my best to describe what a meltdown can entail. Today, Nick had a meltdown of the likes we have not seen since starting him on Risperdal in April. One minute he was fine, the next minute he is screaming uncontrollably, laying on his bed, covering his face up with his blanket, shaking his head back and forth, biting his lips until they bleed, and his whole body seems to be so enraged that he shakes. At that point, my child is no longer 'there'. It is during these rages that he will bang his head or hit himself in the face. Before starting medication, these would happen almost daily. They would render Nick unable to function, and our whole focus at that time would be damage control. A toddler having a tantrum is normally due to them not getting what they want. A meltdown can occur from something as simple as lights being too bright, the microwave being turned on, or even the wind as it blows past his ears. Any of these situations can send Nick into a cataclismic state. It can also be caused by anxiety. Anxiety over a simple schedule change, if he has to wait a few minutes at the table for dinner, if he sees an oscillating fan, etc. Yes, these have happened in public. I can't reason with him and tell him to 'stop it, or else.' These are things that literally HURT him. You cannot begin to imagine how it is to watch your child endure something like this and feel so helpless.

Tuesday, August 03, 2010

What a weekend.......

Yes, I know I am late for the weekend wrap up; but when you hear about our busy weekend-you'll understand why!

Saturday: Started off ok. Got up around 7am in order to get the kids ready for their swimming classes. We had our usual of waffles and cereal. The only hiccup in this process was that Mike did not go because he was not feeling up to it. Ok. I schlep the kids to the YMCA and we all stand in the hallway waiting for one of the three family dressing rooms to open up. In all actuality, there is only two that we can use-unless we want to endure torturous screaming. The third room is the bathroom-and we all know PUBLIC RESTROOM=TOTAL MELTDOWN. We finally get changed into swimsuits and make our way to the pools. I get Nick all situated with a life jacket, and we get into the little pool where Nick has his lessons. I don't see his regular swim teacher. Uh-oh. There was a sub on this day. Uh-oh. Nick wanted nothing to do with her. Everytime she came near us, he cried and looked the other way. After a couple of times of this, M, the older girl in his class(she has epilepsy) said matter-of-factly to the teacher: "You're making him cry! You need to stop doing that to him!" We all got a chuckle out of that. Fortunately, the teacher has an autie of her own, so she took no offense to him utterly ignoring her! After that it was time for Michael's swim lesson. Michael's are in the big lap pool. Me and Nick got changed back into our dry clothes and sat on the bench watching Michael. Nick was at this point, getting a little out of sorts, but nothing extreme...yet.
By the time we got home, Nick ran straight to his room to lay down. He was screaming and shaking his head; his behaviors were reminiscent of the months before we started Risperdal. Oh G*d, not this again!
Mike went into his room to see if there was anything he could do to soothe him. He came out and said "I think his tummy is hurting...he keeps putting his hands down there and holding it. I think you should go in and be with him." I went in, kneeled by his bed and asked "What do you want Nick?" He sat up and replied "I want squeezes". At this point, I am thinking he is still upset about the sub teacher. After a squeeze, he laid down again and was still upset. I asked him if he wanted more squeezes-and he sat up and said "More squeeze". I squeezed him again; he laid down and said "goodnight". A few minutes pass, and he then comes out and lays on the floor. Still trying to figure out what is going on with him when we notice the wretched smell coming from his diaper. Nick had the mother of all BM's and this was smelly even by his standards! It was a ripe and heavy load. We got him cleaned up and were on our way to playgroup. He was feeling much better, and back to his normal self. WHew! Playgroup today took place in the gymnastics room. Safe to say that both Nick AND Michael enjoyed this!! They were jumping on the trampoline(which happened to be part of the floor...very neat!), Michael was swinging into the foam pit, Nick was swinging on the bars, and they both just had a grand ole time! Afterwards Nick had another ripe BM, but this one not as bad as the first. We went to skate, and that was pretty much it for Saturday. Saturday night Mike found Michael sitting in his room watching "Temple Grandin" on HBO! HUH??

Sunday: I am getting a shower when Michael asks through the door, "Mom? When did Nick start talking?" "Ummm, around four I guess." "Hmmmm, just like Temple Grandin!" he answered back. He still uses quite a bit of his own jargon, but little conversations are emerging. On this night, he told his brother "Goodnight, I love you." I know this because I suddenly heard Michael say "I love you too Nick!" Michael has been waiting for nearly 6yrs to hear his brother say "I love you". It was enough to make you cry tears of joy. I decide to try and take Nick off of his melatonin. The PC3X has a calming effect(YAY), and the Risperdal also makes him a little drowsy. I figured it would be worth a shot to try and decrease what we could. So, for the past two nights, we have been free of melatonin. Cross your fingers that we can continue!

Yesterday we had his chiropractor visit. Before the doctor came in Nick was jumping up and down saying "want doctor, want doctor" WHAT??!! I explained that we would have to wait and that the doctor is not ready yet. When Dr A. came in, Nick was giddy with laughter and played peek-a-boo with him! I told him of his rather smelly BM on Saturday, and he just said "GOOD! That means it is working! It is cleaning him out, just what we want it to do." Even the small things are being noticed...for example, Mike now says that he can now tell when Nick is doing a BM-he gets that 'look'...which leads us to think HE might now realize when he has to go as well. One day at a time.

Sunday, July 25, 2010

Community.....


It has been another busy week here in our house. The summer activities are in full swing, and we are doing something at least 6 days a week. There is so much going on really that I do not know where to start. I guess we will start with some medical stuff. Nick's chiropractor has ordered one of the biomedical treatments that has been beneficial to kids with autism; that should be in on Tuesday. It will cost us $110 for a three month supply, but if it helps him then it will be well worth it. If it doesn't, then we can at least say we tried. It was brought up by one of the other chiropractors in his office one time when Mike took him in, so we wanted to ask Dr. A (his chiro.) about it. He said no problem and that he would go ahead and order it.

We are also in the process of finding a new tutor for Nick. Tracy still comes twice a week, and we are trying to find someone to pick up another two days.

Today Nick thought it would be fun to wake up around 6am. Not only was he awake at 6am, but he was roaring to go. Much to my dismay, and to Mikes'. I managed to get him to wait in his room for another hour or so. But after that it was futile. I kept hearing this little voice beside my head going "I want meeeeeelk. I want meeeelk."
One thing about Nick is that he knows what he wants and he won't let up until he gets it. He is also becoming more and more verbal. Which is a double edged sword. It seems that while his word usage is going up, his loud; unintelligible vocal stims increase at fever pitch. Although, I do notice this more when we are out and about rather than at home. I guess I will take what I can get.

So, I must say, that although we are busy beyond belief with all the activities going on; very positive things have happened. Nick is getting out in the community-and the community is getting to know Nick. The staff at the YMCA have fallen in love with him. They always say Hi to him and ask how he is doing today. He smiles big when he is in the pool and he sees his swim teacher. He knows he is about to have some fun and loves the water. There are other special needs kids in that class, and it is wonderful. Both of the boys have benefited from our YMCA membership, and we are there two-three times a week. He also has a playgroup every Saturday afternoon, which from the above picture, gives everyone a workout. He runs for every door he can get to, often followed by one or two staff members or us. It is quite comical.
Since we have been going to the skating rink, people have started to talk TO Nick as well. It is also nice to have people walk by and say "He having a good day today? He is doing so much better now!" We have met Eddie-the zamboni driver, and the figure skaters who spin in front of Nick when they see him, the hockey coaches who have offered to take Nick out on the ice and the other wonderful people. I love the fact that they treat him like other 6yr olds and talk to him. I like to think that even though he may be jumping and flapping, he understands what they are saying to him. I also like to think that one day, he will start talking back to them.

Sunday, July 18, 2010

Weekend Wrap up...


I know, I know, it is a little early for a weekend wrap up, but figured since I had some down time I might as well. Friday started off rather slow. I thought it would be an easy day, with no appointments until 4:30pm. Apparently I was wrong. We got a call around 3pm from another tutor. She had scheduled a meeting/interview with Mike while I was gone, and today was the day. It was scheduled for 3:30pm, and we had to leave for Nick's chiropractor around 4pm. Ok. Not.So.Bad. She did not make it here until nearly 4pm. I met her in the driveway on the way to the chiro. Nick was not happy about this derailment of plans, and cried and covered his face to show his displeasure. We talked to her for a little bit, and she gave us a resume to look at. I then jetted off to the chiropractor, missing our 4:30 time by about 10 minutes. I hate being late. We were still allowed to see the chiro. and Nick got some adjustments. When we got home, Mike and I held a "family meeting" on the back porch to discuss the tutor situation. Mike thought she might be over qualified and more set in her ways since she is a little older and more educated than his others. If there is one thing we have learned, it is that with Nick it is better to be more flexible in ones' thinking. His current tutors have generally followed our lead with what works for Nick-and he was concerned that an older, more educated(not saying that education is wrong) adult might be a little more 'set' than the younger types. We came to the decision to try it out, and see how she works with Nick. It took him about a month to come around to the other tutors, and I did not want to base an assumption on a simple 5-10 minute meeting. We really had no time to actually talk to her in depth about Nick. Now the problem was trying to schedule everything.

Saturday started off at 9am with swimming lessons for both kiddos. Actually, Nicks' was more or less just playing in the water with other special needs kiddos-but I do think there might be some actual learning going on. If not, who the hell cares, it gives us a chance to be social and not have anyone judge or laugh at my little man. All the kids in that class are just adorable anyway. Then, at 10am it was time for Michael's swim lesson. That went on until 11am-at which point we came back home, ate some lunch and then it was time to head to playgroup. This was comedy hour. Two YMCA staff members not well versed in autism in a big gym with two autistic kids. Sit back and marvel at the mayhem. Nick alone gives in-experienced adults a run for their money...imagine times two! There are also 4 sets of doors in said gymnasium-and for those that know Nick; that is enough said. The whole hour was spent with Nick flying by us laughing, and an exhausted staff member chasing behind him. By the time 6 weeks is up, they should be Olympic class sprinters. It is very entertaining to think people in their 20's are having a very hard time catching a six year old. People tell us "don't worry, we can catch him" and to them we say "Okay, GO!" Then is when they say "Man he is FAST!" Yup. We know.

Saturday and Sunday evenings are hockey practice. Not much went on then other than hockey. Which, we have to start getting ready for now, so I have to cut this short. More pictures to follow later.

Friday, July 16, 2010

Home Sweet Home....

I am posting this from HOME!! I got home around 1:30pm yesterday afternoon and have been going non-stop. I have a little time now to get on here and post before I have to pick up hubby and Michael at the movies. They went to see "The Last Airbender", and I am just hanging out at home with Nick. I dived right back into Nick World yesterday. By the time we got home one of Nick's tutors was here and we all went on a scheduled play date with another little boy with autism (and his tutor). His mother came also, and while the kids 'played' with their tutors, us grown ups got a chance to talk some. After all that, it was almost time to take Michael to his dance lessons at the YMCA. Dance was finished at 7:15pm. Then it was time to pick up some dinner, give each boy their meds, give them baths, and settle down to bed. This morning I was up at 8am. Nick told me he wanted some milk,and a few minutes later he said he wanted waffles. Michael was already up playing a new computer game, and said he was not hungry. Today we went and renewed the Jeep registration, then I dropped hubby and Michael off at the movies. Tonight I am being told is skating night, so we will be at the ice rink. Will try to see if I can post some pictures later. That's all for now.

Friday, July 09, 2010

Almost Home

I have just a few more days left here in Colorado. School has been challenging at times, but have gotten through it. I talk to the boys almost daily....I cringe to see our phone bill when I get home LOL. Nick and Michael have been having a good time with daddy, and they sound like they have been keeping themselves busy with activities; which of course, I will be diving right into when I get home. Guess I am going to try to enjoy my last quiet weekend ;)

Nick has gotten used to the zamboni now and no longer screams when it comes out to clean the ice-he just likes to make sure that it does not leave the rink and come after him :) Constant exposure sometimes helps with those things, but has not worked for the vacuum or microwave...go figure. Nick even will talk to me on the phone. Although his conversations revolve around making sure we are not going to vacuum or use the microwave :) LOL. Just gotta love him.

Michael is helping daddy out with the house cleaning and yard work. Both of them are now enrolled in swim lessons. Michael has also started a hip-hop class and he told me yesterday his teacher told him he was his favorite student. He still loves his skating, and is getting to be pretty good at it. Next weekend will be my first weekend dealing with all the summer stuff...they have swim lessons starting at 9am! Oh well, I will be with all my boys again and be loving it.

Sunday, June 27, 2010

Feel so 'out of it'

That is one thing that I hate about being away from my boys. I feel so out of touch with them. I am now officially the parent of a junior high schooler, and a special needs first grader. Michael did get accepted into a prep school for his sixth year, so that is good. And since I have been away, their summer schedule has slowly filled up. Michael and Nick are both taking swim lessons at the YMCA. Although Nick will be in a special ed class. Michael is also taking dance and tae-kwon-do. Add that to the weekends when he is at the skating rink. By the way, he has learned to skate backwards and scored his very first goal in ice-hockey practice. He was so proud of himself-so I hear. Nick is quite the ladies man it turns out. He gets all kinds of girls to spin and twirl in front of him(laughing uncontrollably at them as they do so), and gets them to give him their little smushy/sticky wall climbers. He can do all this without saying a word....just merely laughing at them and having a good time (although, daddy does help to point them in the right direction of said blonde boy laughing).

I just feel so out of the whole autism world. In some ways it is a nice break, but in others it just feels blah. It is like almost like a big void in my life right now. Autism is such a huge chunk of my life, that I almost feel 'naked' without it. Imagine my surprise when a classmate of mine here asked for some pointers on dealing with an autistic boy that her hubby was providing daycare for! Yes! I am in my world again! I started rattling off all kinds of things about Nick and some of the ways we have helped him, and some of the ways that others have helped. I let her know about tactile stimulation(as in how stickers help Nick calm down by just feeling the stickiness over and over), how sensitive his senses are, and how he needs to be warned when something different is about to happen or something loud. I don't know how much it helped her hubby, but I know she seemed to think it made sense.

Anyway, going to go for now. Probably will not post again until I am back home on the 15th.

Monday, June 07, 2010

Update....

I am out of town until the 15th of July, so there may not be any blog posts until then. I will however still be on facebook if you want to keep up. Hubby and the boys are back home, so I don't have much daily contact other than a telephone call a few minutes a day. What I can tell you is that hubby took Nick to his Chiropractor last Friday and he said some things were brought up by the Doctor. One of them being a heavy metals test and possible spray to chelate them from his system. Not sure what we will decide on that yet, but it is a possibility. Michael had hockey practice today and other than that, no big news. Not sure how many posts I will do while I am away, but just so you all know, we are still here. Still getting through whatever comes our way.

Monday, May 24, 2010

Weekend Wrap up...

We had a very busy weekend but very fun as well. Saturday we woke up and had our normal breakfast (two waffles for Nick, cereal for Michael). The boys and I went to the BX so that I could pick up some last minute items for my uniforms, and I picked up uniforms from the alterations shop. We then came home and ate lunch. After that, we headed down to Charlies' Safari to meet up with a friend of mine and her boys. Mike came along for this one. He was curious as to what the place was, and recognised that I would need help with Nick. I was glad that he came along! I mean, I normally AM glad that he comes along with us, but this time I could not have done without him. We get to Charlies and Nick cannot stand all the noise. We figured this might happen. Mike volunteers to go outside with Nick so I could stay and talk as well as watch Michael.

After sitting and talking for a bit, I thought it would be nice to get some sodas, but my wallet was in the car-and Mike had the keys.I called him on my friends cell phone and he told me they were in one of the stores next to Charlies. We met up outside and he wanted to show me what they found in the furniture store.

Nick fell in love with this chair! It spun around and around. He stayed on this thing for at least 10 minutes. We then toured the whole furniture store with Nick 'testing' all the furniture. He could really get a job doing that-he put that stuff through its' paces. After the fun furniture store, I then went back to Charlies to get our drinks and resume talking with my friend. About 20 minutes later, Mike comes back in with Nick. But this is different...Nick is not screaming. We try once again to get him to go on the inflatable jump castles. Low and behold he DID! Turned out that my friends' youngest boy was a great peer model for Nick! This is what we saw the rest of our visit:






Thanks B. for being such a wonderful friend to Nick!
We ended up going out to eat afterwards and just had a really awesome Saturday! Nick ate Pasta Marinara at Ruby Tuesday's, and mommy enjoyed a chocolate shake. We left there stuffed to the gills!
And today....


We signed the big boy up for Hockey. He has ice skating lessons starting in June-and then; ice hockey. Good thing we have awesome health insurance...

Monday, May 17, 2010

Our Newest Project...




This is what we have been working on for the last couple of weeks. It took a while to figure out the program and exactly what we could do with it. My computer kept freezing up everytime we would come close to finishing it, which was very frustrating. However, now that we have the trial version complete, we wanted to see what others would think. Nick watched it tonight after it was complete, and he loved it. He was repeating quite a few of the words. He knows most of the items already, but now we have added the words to what he likes as well as my voice saying the letters and words. Things like Sesame Street or even some of the other videos we have for autie kids were just too confusing for him. Nick does not get much out of characters, and even simple story lines are lost on him. So, we made our own. And will continue to do so because he really did enjoy it. Let me know if you all like it...

Monday, May 03, 2010

Busy Weekend...

First we had this....



Which means some of these came over....




They brought some of these...



Which led to a few of these...




Today we did a lot of this....


Which led to a little bit of this...



We then went and bought some more of these...


Then it was time for *ahem* this....


Finally, it was time for this...


And we think you are weird too...

Sunday, April 25, 2010

My Boys...

They are like my air. I need them in order to survive. They are a package deal. I cannot have one without the other. They are exactly how they were meant to be. No, things are not exactly 'perfect' in some people's eyes, but they are perfect to me. They are MY boys.

Tuesday, April 20, 2010

A Look....

Today I called his name and he LOOKED at me, and waited for me to tell him to do something. Today, he was snorting like a pig--on purpose. Today, he went to daddy and said "goodnight" when I did not even tell him to do so. He was there. He told me he wanted applesauce-while he looked right at me.

Had another chiropractic appointment with Nick today. He is getting better. Said hi to the receptionist(with just verbal direction from me), said hi to Tutor on his own. Nick got a few more adjustments, in which he stayed completely still again following docs orders. In fact, Nick got onto the table on his very own. I asked the doctor what it is exactly he is doing. He told me he is removing/adjusting what Nick's body tells him to. Today he told me he removed some emotional thing that he said happened to Nick when he was three years old. He said he could even tell me the date if I wanted. I said No, but I was wondering what it was exactly. He said there is more to chiropractic care than just adjusting the spine. He is treating the entire central nervous system, and if need be, we can even go further in our treatments and start detoxing with the aide of his nutritionist on staff. He is pleased so far with the positive results he is getting. Maybe he is getting these from Nick during adjustments? I do know that we are seeing some results after his adjustments. Last Friday, his tutor graphed his Requesting at 80% during their session--the highest it has ever been. But, apparently school is still seeing the 'old' Nick-running off, slamming doors, etc. Which leads me to wonder-why the drastic difference in settings? Could it be that Nick knows the teachers are outnumbered and therefor he just goes for it?? Could it be that he suppresses his desires for such things while at home and lets loose at school?? Not exactly sure how to fix this problem. Maybe he is frustrated because he thinks they treat him like a baby?? How many years can one really stand going over the ABC's? When he was bored during therapy he would just stare out the window and his therapists were having trouble reaching him. We told them to challenge him with different things, and low and behold, they were shocked with what he knew! Maybe the same is now happening at school? Is he tired of the same old curriculum he has been getting since he was three?? One has to wonder.

Saturday, April 17, 2010

Notes....

I was asked to keep track of any changes in Nick since we started with the chiropractor; so here goes.

The first visit went well. Nick really enjoyed it and seemed very at ease with everything-despite being a little anxious at first. After we got home, Nick was very verbal and laughing and playing outside. Mike asked me what I did to him to make him like that. I said 'Nothing'. Suddenly, Nick passed some gas and headed back to his room stating 'I need a diaper'.

Yesterday, while working with his tutor, Nick's verbal requests were at an all time high. 80%. He has never been that high since starting the program last summer. His tutor showed me the graphs they have been charting of all of his undesirable behaviors. They have dropped. This was also since starting the Risperdal. His slamming doors/hitting/banging have gone down considerably. I have not seem him bang his head in two weeks. Meltdowns have decreased, and the ones he does have he is easily consoled and can get a hold of himself much quicker. Last night in the bath, not only did he play in the tub-be he did not want to get out. He did not scream-but he kept going back every chance he got to get in the water. This is a rather new development-and a welcome one.

Today was his second visit. He said "hi" to the receptionist with some prompts, but left out the "SAY" as in "SAY hi". He simply said "hi". We practiced exchanging some social chit chat, and his responses were the same. He left out the "SAY" in all of them. For someone whose speech is largely echolalic, this is a step in the right direction. He smiled at the doctor, and did not distribute much anxiety this time around. He sat still when the doctor told him to, and even gave the man a high five. Tonight as I was reading him a book; he did hit me. Whether he meant to or not, I stopped and said "What do you say?" and he said "sorry". Usually he would repeat "What do you say?" or "say sorry". But not this time! He answered right away with the correct response!

Have we finally found the right combination?? Nick is getting his personality back. There is no way to describe how this feels. Like we are on top of the world right now.

Wednesday, April 14, 2010

No School Today.......

At least, not for Nick. They have a half day today which means that his schedule did a flip-flop. Literally. ON half days, someone had the bright idea to have the kindergartners flip their schedules around. For example: Nick is in the PM kindergarten class-which means his school starts at noon. On some half days he is actually off. However, on half days like today-he was supposed to be at school at 8am. Well, the school does not tell the transportation people this(Brillaint huh??) and it is confusing for all to say the least. Not to mention, it completely disrupts the whole morning routine we have established since the beginning of the school year. I swear, sometimes it seems the 'typical' people need to start using their brains.

Nick has another chiropractor appointment today though-so being out of school is actually convenient. We will find out what they saw on X-rays and develop a treatment plan. Not sure if they will do his first adjustment today or have us come back, but I am excited to be doing something. It might help, it might not. But we will try anyway. His appointment is at 4pm, and depending on what is going on tonight I might do another post to update what happened. I told Nick last night that there would be "no bus" today and that he would be going to the doctor. He started to get a little anxious and started whimpering. He then promptly told me "Goodnight Nick". :)

Update: Nick had his very first 'adjustment' today. Nothing big. Just more of a vibrating hammer type thing that was used on different parts of his head,neck,and spine. He seemed to really enjoy it. Nothing out of the normal as far as behavior wise so far. Although, I will be keeping track of his progress. We have another appointment on Friday, and the doc wants to see him at least twice a week. So, that will be another thing on top of everything else we are doing. I swear, will it never end? Of course I already know the answer to that question.

Sunday, April 11, 2010

Why Such a Stigma??

As if this life with autism was not enough, it seems that there is a huge stigma (ok, not SEEMS, there is) added to moms that have to use medications. We are looked down upon, criticized for our decisions(did not go GFCF, did not try the right supplements, gave up too soon) even more harshly than others. Let me just get one thing straight. I never, ever, thought that 2 years ago my son would be on medication. We DID cut out diary, ate organic food, gave him Cod Liver Oil, DHEA supplements, vitamins, we tried clay baths to help him 'detox', and I am sure I am missing some other stuff we did. We even tried some supplements that were supposed to calm him and make him think clearer. What happened? He went psychotic. He was WORSE. He peeled off the baseboard in the bathroom, he tore through the drywall, peeled off the paint, and destroyed nearly every door in our old house from the constant banging. Despite all of the above mentioned treatments, he was still non-verbal autistic. The only supplement that offered reprieve was his melatonin-at least he could sleep through the night. However, as time wore on and he got older, his stimming got worse, and it seemed like we would have these manic episodes that would last days. I don't think anyone living in our house at the time of these episodes would doubted us. It was horrible. It was not a decision we took lightly-and I don't think ANY parent does. But, not all autism is 'recovered' through special diets or supplements, and we are doing what has worked best to date. That does not mean that we are now totally resigned to medications to help-we are not. We are still pursuing chiropractic care, and possibly some other forms of natural therapy. I am trying to go with what Nick really likes-and that is pressure. We are in the mindset of doing what works for my son. Why is there such a stigma with meds? If it works, then it works for that child. Moms should not begrudge other moms for doing what works for their kids. We already have enough to deal with, we should all be supporting one another in this journey-not tearing each other apart.

Ok, off my soapbox now. We had a great weekend (and this post was NOT directed at anyone-just general) and I think we even made some new friends! Nick spent all day outside today. Barefoot, and just immersed in doing whatever came to his little mind. He was happy, and we heard lots of his silly talk. I went to Barnes and Noble to order the new book by Susan Senator. She was nice enough to include some stories from families, and we just happened to be one of them. The book is called "The Autism Mom's Survival Guide". Once I get it, I will post some more about it. I loved her first book "Making Peace with Autism". That was the first book where I could relate. Up til then, the kids I had read about all appeared to be higher functioning, or offered hope of miracle like 'cures' through special diets and such. This book was REAL. She was telling it how it really is, and how she finally came to accept autism. I often wonder why these talk shows cannot have someone like her on them? I am sick of certain celebrities being looked upon as autism experts. I would love to see someone like Dr. Temple Grandin, or Susan Senator, or Donna Williams, or Dr. Simon-Barron-Cohen....just ONCE! Try giving those people some quality air time...not those celebrities who shall remain nameless.

Wow, this turned into some sort of a vent! I am watching my darling 6yr old propel himself around the dining room table by sitting in his little Tonka Dumptruck. He is flapping his ears and holding a Spiderman sticker, and jibbering to himself. He is happy, and so are we. Isn't that what it is all about?

Tuesday, April 06, 2010

Breathing Again.......

I think it is safe to say that for the better part of the last 9 months or so, we have been under some sort of siege with Nick's moods. Outbursts were becoming ever more frequent and aggressive. He could go from happy-to pissed off in the blink of an eye. There were many days when this happened every hour, every 30 minutes, all day long. Sometimes we knew what set him off, sometimes we didn't-and would wander around asking him "what happened?" only to be slapped, or have something hurled in our direction. I was always afraid it would strike while driving and he would launch his sippy cup. That was my fear always when he had a drink in the car. Or even a toy. Or sometimes even Nick himself. He would be in his room, curled up on the floor of his closet screaming. He would be completely unable to function, and this could go on for hours. Days like this his therapy would consist of just trying to snap him out of it. His therapists were mainly just trying to control the damage. He banged his head, hit himself, bit himself, hit his therapists, pinched them, screamed, shouted, slammed doors, overturned chairs, you name it. To see him like this was heartbreaking. Then, after a few days, he would be completely the opposite. Saying words, eye-contact, joint attention, laughs, smiles, everything. Then, suddenly a few days later we were back to hell.

I came to the conclusion that we needed more help. I wanted Nick to be comfortable in his own skin. I wanted it to just stop. I contacted his doctor. He had not seen Nick in more than a year, and I explained to him all that was happening. He gave us a prescription for Risperdal. A very low dose (.05mg), just to take his 'edge' off. We saw results immediately.

-instead of stimming all through dinner; Nick was able to sit at the table and just eat like the rest of us.
-his toe-walking and stiffening have decreased dramatically; my baby is no longer stuck in a stimming cycle. He still stims, but he is relaxed.
-little things like me driving him to school used to cause him so much anxiety that neither of us enjoyed it. Yesterday, he only whimpered twice.
-he talks more.
-he is happy, and he is comfortable.
-Our stress has decreased dramatically as well. We can breathe again. My shoulders and neck no longer hurt.
-We are enjoying our son.
-Significantly less yelling and tension in the household.
That is worth it. To have a Happy Home. A peaceful home.

Saturday, March 27, 2010

Mommy's Exhausted...

7:30 a.m.: Woke up. Funny really as I don't even remember falling asleep. My mind is already racing with all the stuff that needs to be done just to get us out the door this morning for soccer. First thing I think: The laundry is still in the washer. Second thing: Must shower. Showering is good. Very good.

8a.m.: The process starts. Move laundry out of washer into the dryer. (in order to accomplish this, I must first empty the dryer...have I mentioned my disdain for laundry??) Search through dirty clothes for Michael's soccer uniform. Realize that he did not put it in the dirty clothes from last time. Oh well. At least he'll have clean underwear on right?? At least, I think.

8:30-9a.m.: Get dishes done and start preparing breakfast. Michael wants mini cinnamon buns, while Nick gets his usual of two waffles. The dog of course goes in and out at least 15 times during breakfast alone. He is old and probably forgets that he just went out, among other things.

10a.m.: Breakfast is done and I am cleaning up our morning dishes. Let the boys do whatever for a bit while I watch a little TV.

10:30a.m.: Start the process of getting Nick ready to go. Change his diaper, get his clean clothes, and brush his teeth. At six years old he still requires most of this to be done for him, although he is getting a little better at helping at least. Michael starts to slowly get his soccer uniform on. This takes a while because he is watching TV while he does it. Somedays Nick even doing stuff on his own is faster than Michael.

11a.m.: Boys and me are ready, all that remains is waking up hubby and well, he can dress himself.

By 11:15 we are out the door and headed to the soccer field. The game starts at noon, but coach wants them to be there by 11:30 to warm up.

1pm: Game is over. We are all pretty hungry by this point and stop off to get some Burger King for lunch. By 2pm Michael had to be at the Youth Center for the end of season party. So, in less than an hour the kid had a Jr whopper meal, and pizza. You'd think we never feed this child with the voracity in which he devoured the pizza. One of his coaches asks if we will be at the Easter Egg hunt the next day. I say "probably not, because our youngest does not enjoy stuff like that". She walks away clearly puzzled and most likely thinking "What little kid does not enjoy easter egg hunts?" Ummm, this kid. He would enjoy being outside, but he would not grasp the concept of hunting for brightly colored eggs. On a small scale (like our backyard), sure. Not with a gaggle of other children and their parents. Can you say "Overstimulated"? The child met his social outing quota by being schlepped to see "Reptile Man" at Michael's school earlier this week. By the end of the program, I had managed to get Nick to the front door of the cafeteria-that was it. Fortunately, as it turns out, being on the outside of a room full of snakes is socially acceptable. We were not the only ones watching from a distance. Michael however, was right in there enjoying every moment. He's used to Mommy having to stand on the outside sometimes.

3pm: We finish with the Youth Center. (I did not take Nick to this-it was just myself and Michael). I actually got to talk with some of the other parents-what a concept! Afterwards, we head to Barnes and Noble to pick up the latest book in the "Diary of a Wimpy Kid" series. Michael has begged for it now going on about two weeks. I caved in finally.

By 5pm we have made it home again, picked up Nick, dropped off Michael, and head to the grocery store. 6pm we are on our way back home to unload the groceries, and start something for dinner.

7pm Lasagna is cooking, and I am making Ravioli for Nick. 7:30-bath time for Nick, and by 8pm he is taking his medicine to go to bed.

By 8pm I don't know who is more tired-me, or Nick. That was my day in a nutshell. I am tired just typing it!

Friday, March 26, 2010

Screaming, Biting, Banging....Had them all this week.

Another week is coming to an end, and I must say, I am glad it is over. Not that things have been that bad, just...challenging.

Last weekend I had weekend duty at work. So, I was put on night shift for two days. Which of course, messed everyone in my house up. Not sure about your house, but in mine, if mom is not awake during normal times-then everything seems to go south very quickly. Daddy tries to handle things, and for the most part he does a good job so I guess I should not complain. But, there are just things that mommies are better at doing. And the little boys of mine know that. For simply fun, you go get daddy. For everything else, mommy is where it's at. Needless to say, Nick was discombobulated-but held it together rather well. Sunday night however, we saw some disturbing behavior. I put Nick to bed with his normal dose of melatonin, and kissed him goodnight. About an hour later I am sitting at my computer in the dining room and I hear Nick just start screaming. Unusual. Especially with melatonin. I go in there to find Nick biting himself. He sits up and proceeds to bang his head on the wall. I try to comfort him, but it is no use. He simply lashes out and slaps me. He then bangs his head again. Words can not describe how helpless you feel when your child is locked in his own mind and cannot tell you what is wrong. After more than an hour of intermittent screaming,biting,and banging (the three ING's at our house), our only conclusion was that he might have a headache. I scour the hall closet for some Tylenol-we are fresh out. Damn! By this time it is around 10pm, but I don't care. I leave Nick bundled up on the couch with daddy holding his hand and go out for the Tylenol. First store closest to our house does not have any. Damn, Damn! I then head toward a gas station a little further away, and finally see the best thing in the world to me at that time...TWO whole bottles of Children's Tylenol. I snatch one up and head home. By the time all I said and done, it is midnight before sunshine gets to bed. I was hoping it was just a fluke episode-but it has happened a few times since then. Don't know what is going on; but I am going to ask his doctor next week when we go.

Speaking of that, I actually cannot wait until Thursday. Nick's language seems to be at a boost right now, and he is doing well in his therapies. When he is able to concentrate. And is not stimming at lightning speeds. He needs some more help. The mini tramp is good for re-directing his energy-but only goes so far. He cannot relax. When he is; he simply does amazing. I have also asked his doc for a referral to a chiropractor. One of his tutors mentioned Nick to him and now the guy wants to see how he could help Nick. He is not charging us anything out of pocket-just what insurance covers. So far, he has only treated NT adults, but is interested to see if he could maybe start branching out into treating kids on the spectrum. So, Nick will be his first ASD patient. Maybe it will help Nick be more comfortable in his own skin. All I want is for my baby to be his absolute best. Like I said, Happy Nick we can deal with. I am not looking to 'cure' him, or drug him for my pleasure. We have not come to this decision lightly. This has been cropping up from the back of my mind for a year or so. Diets & Supplements just did not yield enough results.

Wednesday, March 17, 2010

Don't be fooled by this happy demeanor....

That is what I am having to tell myself today. Nick has been in a happy mood all day long. The weather was nice out, so hubby let him wander around in our fenced in backyard. Nick was happy as a clam. All of this talking and smiling is what has lulled us into that false sense of "all is well" in the past. This is the Nicholas I want him to be..this is the Nicholas HE wants to be. Happy, playful, talkative(even if he was repeating "Nick don't get the vacuum!" over and over :) ) asking to be tickled, coming up to us for fist pumps(which is uber cute by the way!), playing with his toys instead of thrashing about the house destroying our doors. In an instant yesterday all that was gone. Replaced with screaming, throwing toys, hitting me, and just all out losing control. I spent 30 min just sitting with him on the couch. Nick was curled up in a ball in my arms and we just sat there. I was happy that he was being cuddly, but I could have done without the screaming and throwing.

Happy days such as this tend to make me forget about the bad days. They make me think "Oh I can handle this", "It's not that bad". Then WHAMMO! We get hit with several really bad days in a row where nothing is going right. My parents did tell me that they would possibly help to buy him a squeeze machine; since he really seems to like pressure.

I took my parents to the airport yesterday morning. Had to get up at 3am in order to get to the airport by 5am. I came back home, put some mini-cinnamon buns in the oven for Michael, got him up and ready for school, then I passed out on the couch until around 11am. Not much housework got done yesterday I tell ya.

Monday, March 15, 2010

He Does What he Can

I have not posted so much lately due to us having family visiting. It has been wonderful having an extra set of hands around here to help with things around the house, as well as the kids. I now know that I could get really used to having someone like a nanny to help with things like calming Nick down from a meltdown, or tending to dinner while I get some time to do some small cleaning. Having someone who will clean up the dirty dishes after dinner while I get the kids a bath has been divine. Of course my mother did not have to do this-I did not make her; but she did it anyway just to help. We of course had plenty of time doing other things too. Taking Michael out for an afternoon; just him. He got some Legos, some new rollerblades, and we went to see the movie "Tooth Fairy". Nick also got his very own day in which he was allowed to pick out any toy he wanted. There was no apparent limit, and the kid could not have been happier. He was all smiles on his day and he KNEW it was his day. He said first thing in the morning-HAPPY.

We have one more day with them before they head back to Florida. They have been a huge support system for us regarding Nicholas. "He just does what he can" my mom says. My mom has been very supportive in getting more help for Nick. More help as in possible medication. I have been toying with this idea for a few months now. Only because I cannot find any correlation/cause for some of Nick's severe stimming/anxiety attacks. He gets very tense and just seems to go completely wild. He will be like this for a couple days, then he will be completely the opposite. When he is not this way he is doing remarkable things. Like looking at us when we call his name, following two step directions, speaking to us, requesting things from us, and just all around able to focus. When he is not like this, he is stimming so severely that it is impossible to get anything out of him. There is also a huge gap between what he does at school, and what he does at home. There is just too much difference between his "good days/bad days". I had hoped it would not resort to this; but if it will help him then it is worth looking in to. I was just hoping he would not be that severe to need medication-but I cannot deny it any longer. The calm and relaxed Nicholas is more lucid. He is happy-and he knows it. He is able to communicate better and enjoy himself. The stimmy/anxious/tense Nick does not enjoy anything. He is not "there", and is not happy. I just want something to help take his edginess off. I have been e-mailing his doctor, and we have an appointment set for 1 April.

Wish us Luck....

Friday, March 05, 2010

We are FUNKdified....

Ugh, Nick is in one of his funks. Don't know how else to describe it really. It has been going on all week. It is one of those "I am so rambunctious and in need of stimulation that I cannot sit still". No, not even for a second. He is all over the place physically as well as emotionally. One minute he is fine, the next we are on the verge of total implosion. Not even therapy was a repreive-as he pretty much could not pay attention to any of it this week. Wednesday the slightest thing would totally set him off and we were simply trying to make it to bedtime. One of those weeks where I am just trying to hold it together hour by hour. And tomorrow I got to take Funkboy to the airport to pick up family. Not enough Tylenol in the world for me right now. I have to mentally prepare myself for the stress that he will undoubtedly cause. I am taking him in his stroller-because I simply cannot handle him right now any other way than confined. Yes, it may look strange to have a six year old in a stroller-but I don't give a shit really.

Wednesday, March 03, 2010

I Give Up...

On the whole door thing. I know I will never understand it, can barely prevent it from happening, and it is not seeming to be going away anytime soon. Our house is locked up like Alcatraz already, and we are in need of more locks. I was attempting to get in a quick nap on Sunday-and had things all locked up. Informed hubby of my whereabouts, and everything was set. I HAVE to lock our bedroom door if I want any kind of respite. Otherwise Nick will come flying in, and start with the closet doors. As soon as I get him away from those and back in bed, he starts with the bedroom door. It becomes a vicious cycle. Closet doors, bedroom door. Closet doors, bedroom door. Lather. Rinse. Repeat. This time, I had managed to get in a few precious moments of bliss, when suddenly I heard a dreaded "WHAM!" It came again "WHAM!" Since nobody else seemed to hear this slamming noise (still don't understand that one??) I investigated. (rather loudly I might add). Nick had moved on to the garage door. This door is not exactly light. However, Nick has taken this door thing to a whole new realm recently.

.....Gas tanks have doors on them dont'cha know. See where this is going?? At first it was our gas tank. Not too bad-let him do it a couple times then "all done". Now however, little mister can spot those little gems in a nanosecond. Yesterday he ran right across the street to the minivan parked on the curb. He has also found the gas tank on his school bus. Parking lots have become a nightmare. If you are not paying attention and holding him with only half your strength, he will weezel out and run like lightening to the nearest gas tank. If you have never seen how fast lightening can run, just stop by sometime. Today it happened to be a silver compact car with its' occupants still inside it. I am sure they were wondering what that little boy was doing careening towards their car, and his frazzled mom trying in vain to regain control.
....Nana and Grandpa are going to get a workout.

Saturday, February 27, 2010

Dentist

This week was a busy week. But then again, every week is busy around here it seems. Nick had his very first dental visit on Tuesday. This was a two-person effort-hubby would not get to stay home for this one. Nick was understandably anxious as we entered the building. He had to go in an elevator-something that he is leery of, but he did spectacular. Once we got to the waiting room, it was filled with other kids and Nick was already on edge. He was running everywhere. Hubby did not even get a chance to sit down. He was on full-blown Nick patrol while I filled out all the paperwork. Even so, Nick managed to get behind the counter and start slamming cabinets. The forms started with the usual; birthdate, sex, etc. But then I got to the middle portion that said something like "circle all that apply"...hmmm, Speech Delay..yes, Developmental Delay...yes, neurologic something...yes. Then I see different conditions listed on the bottom portion. Bingo. Autism was one of them. I also listed some of his sensory issues, as this office would pretty much push him into sensory hell. Then it asked something along the lines of what requests I have for my child. I found myself writing "treat him like a normal child, talk to him like any other kid and explain everything you are doing". He is autistic, but he is NOT stupid. We do not treat him like that at home, and I will be damned if anyone else treats him as such. Anyway, the time comes for us to go back into another office to discuss what brought us here in the first place. The assistant is very nice and laments on Nick's long eyelashes and big blue eyes. She is very patient and explains we will just do as much as he lets us do. If we get to a cleaning, we get to it. We will just do what we can. I already like this place.

We take Nick back to an exam room, and get him situated in the chair. He is bestowed with a small magna doodle, and a pink toothbrush that a nurse accidentally gave him. She went to try and exchange it for a blue one, but hubby told her there was no need, as Nick likes pink. Nick does not see gender specific colors, all he sees is that pink is a nice color and he likes it. Even his therapists have noticed that he just seems to like pink. The Dr comes in and takes notice of his adult tooth growing behind his baby tooth and that his mouth is very small. She says what we had been thinking all along "hmmm, that tooth will have to come out, as well as the one beside it to make more room. Otherwise, his teeth will be all bunched up. See? There's not room in here for it to grow in the right spot. He will probably need braces later on, but we will do what we can right now." Nick is squirming and crying just a bit, no where near the scale as he got his vaccines though-this is going rather well. We actually managed to get through a cleaning. Success! Hubby came out going "wow, that was alot of crying." I looked at him like he was nuts. "That??!" "Oh no, that was nothing. You should have seen him when they gave him ONE shot. Really, that was just a little whining."

We schedule his tooth extraction for a few days later. Yesterday. Yesterday Nick walked into the office like a pro. He pushed the button for the elevator, and waltzed in like saying "I got this." In the waiting room, Nick was stimmy-but happy. He jumped and flapped while looking at all the toys. One little boy was asking questions about him. Things like "why is he doing that? why does he like that?" His mom explained that he was autistic and did things differently. Hubby piped in "yes, but he knew his ABC's and could count to 30 when he was two!"
"Wow, really?" the boy said. His mom even chimed in "Yes, he is very smart isn't he?"
I did not mind that the little boy was asking questions-it is better than simply staring. And we got the opportunity to give them a little education. Mike presented them with a little card that explains autism, and told me "I carry those around everywhere; so when people stare I give them one." This is from a guy who would not even say the word AUTISM a few years ago. Now, he tells anyone who will listen.
We went back to the exam room, and this time Nick climbed into the chair by himself, and requested that the light be turned on. We gave him the sunglasses to protect his eyes, he had some tape to feel on his hands, and a magna doodle. He was ready. He barely flinched as they gave him some numbing stuff for his mouth, and a few minutes later it was time to pull. The first tooth came out in no time, as the roots had already been degraded by the adult tooth behind it. The second tooth took a little more time, a little more crying(actually, hardly crying-more like whining)and a few more minutes later it too was out. We were done. Nick walked out like nothing had happened. The funny part came on the ride home. Nick was blowing raspberries and sticking his tongue out due to the anaesthetic. The dentist was wonderful, and I would recommend them to anyone. All in all, it proved to be not such a big hassle after all.

Friday, February 19, 2010

Silence is Golden.....

It is quarter to ten pm and the house is silent. Between all of Nick's therapists, the dog, plus the boys themselves-this house is one busy place 90% of the time. Tonight was therapy and then right to soccer practice. Once practice was over, we piled in the Jeep and grabbed some B.K. for dinner. Headed to the store to buy some more baby wipes, drinks,etc. and then came home around 8pm. Everyone ate, some got baths, and story time (Nick is really big on requesting "wanna read a book"-so I cave like always). A little dose of melatonin and Nick is in dreamland inside of 30 min. Unlike 3-4 hours without.

Michael too is asleep. Tuckered right out after all that running. Oh how I love soccer season for that very reason. Even the dog is passed out. YAY Me!

Monday, February 15, 2010

Much Ado About Nicholas....

This weekend was all about Nick. 6 years ago on Feb 12, a beautiful baby boy was born. Around this date 4 years ago, that same beautiful boy was diagnosed with autism. It has been a roller-coaster ride ever since. We have had lots of "on the job" training-as no one can prepare you for life with autism. We have learned a lot of things on the fly. We have come a long way as individuals, as well as a family. Nick turned six on Friday. Saturday I took Nick to Toys R Us for a day of spoiling. I originally was not going to take him simply because I wanted everything to be a surprise. Mike insisted that Nick go along.
"Let him pick out what HE likes, not what YOU think he would like." I was kind of miffed at this, as I like to think that I KNOW what Nick likes, but I listened and took Nick along.

I was pleasantly surprised at what Nick gravitated to. He did in fact like everything. Baby toys caught his attention, but I kept moving along hoping to find something that was more age appropriate. A part of Nick still likes the baby toys, and I get torn between what to buy. He is getting older, and I want toys that reflect that. It seems only respectful to him that his surroundings reflect more a kid of his age. He also seems to LIKE it. This year he picked out a cool looking dinosaur that roared and walked when you pushed a button. The age range was from 3-8yrs. We also found a mini-trampoline, and a 3D picture projector. I figured if he thinks in pictures, then by G*d he is going to have the best ones we can get. I bought all the slides that come for that projector. Soon he will be informing us about life on the African Prairie.
We then went to Safeway to pick up a birthday cake. This is where autism can strike out of the blue. We walked up to the entrance, and Nick starts to pull back. He is resistant to going in. I tell him it is ok, and we are going to get his cake. He complies, trusting what I say. But he quickly gets overloaded and a meltdown is ensuing. We have learned throughout the years to become good at detecting what his triggers are. I quickly realize what is setting him off. There are thousands of helium filled balloons all with bright colors,and a whole forest of colored flowers filling the air with their scents. All of this at once is bombarding Nick's senses and he quickly covers his eyes and starts screaming. I wheel him through in record speed and am able to avoid a full-blown meltdown. But that was still not before we drew a few stares from clueless shoppers. I pay no attention to them, as they do not have any comprehension of just how close we had come to a scene much worse-and they would be amazed at this mommas quick response. We buy the cake and here I am having to wheel Nick through this sensory hell again in order to get to the car. This time however, I am prepared. I prep him by saying "Ok Nick, we have to go this way to get to the car. It will just be a minute, and we go to the car. It will be alright." As I say this, he is already covering his eyes again, but I just keep chanting "It's ok..almost done." Then as we exit I announce "See, we are all done now. We go to the car." Nick takes his hands away from his eyes, and all is well. Smiley boy is back again.
Nick also got several garden pinwheels from our former neighbor. She remembered he liked those and had no qualms about spoiling him with tons of them. We also bought a German language CD program. Maybe he can learn his dad's first language-since he seems to have the ability to pick up and repeat multiple languages. It also pairs things with pictures. We celebrated his birthday last night with a simple family party. We all sang "happy birthday" and Nick smiled that darling little smile of his as if to say "I feel so loved right now".

As Temple Grandin would say "Different, Not Less."