Tuesday, July 31, 2007

Scary Situation

We rent a very old duplex in the city. Because of it's age and because it's a rental, things are usually patched up instead of actually fixed. The living room floor slopes into the dining room, the cabinets don't stay closed in the kitchen and none of the doors are in good shape.

About 4-5 weeks ago, I had asked the maintenance guy to change Wes' door knob on his door because the knob on the inside was nothing but broken metal and would easily cut him if he tried to open the door. Tim even went out and bought a new knob himself. We figured it would be best if we had the maintenance guy come and fix it rather then ourselves in case something happened. It was working fine until yesterday. The knob was pretty loose and I had a hard time getting it to catch so it would open the door. Tim called to report the problem but Mr. Fix It couldn't come until today. I told him that it needed to be fixed ASAP. In the meantime he wanted me to put a hook and eye on the door to lock him in if need be. Uuhhhh WHAT!? I will not lock my son in his room like that. It's a safety issue as well as a fire issue. It's against the law in this state to lock someone into anywhere.

Wes had gone up for nap and shortly there after I brought Casey up. I noticed Wes' door was shut tight and I started to panic. I quickly changed and put Casey to bed and tried jimmying the door open. No luck. I tried opening the door with my shoulder and still no luck. I frantically called Tim at work who told me to call the non-emergency number for the fire department. Oddly enough, we live across the street from a station. I called telling them the situation, what had happened, and that Wes has autism and he's non-verbal. They promised me no lights or sirens because loud noises bother his ears. I ran outside and stood on our front stoop watching the men walk to our house.

Long story short, after climbing into his window, breaking the door down and damaging the door frame, they were able to get Wes out. All the while he was bouncing and giggling on his bed. I know he thought it was weird that someone would be climbing into his window. I'm just thankful that he is safe, and wasn't scared.

Now, the next hurdle is to make sure we aren't liable for any damages because of this. Mr. Fix It was the one to put the doorknob on and we called to say it was broken. The firemen said that if we have any problems with the landlord that we direct him to the chief who will explain that it was a fire hazard and safety hazard to not fix that doorknob the day it happened and if he charges us anything, then the landlord will be charged himself. What a bunch of great guys!

Saturday, July 28, 2007

Much Needed Vacation

We took a much needed vacation this past week. Tim took the week off from work and we did some fun family stuff. It was nice not to worry about therapies and nap schedules and being stuck in the house.
The first leg of the vacation we headed north to Maine. My parents have a beautiful house on a small pond just over the border. We stayed there for a few days. Wesley loved playing on the shore and practiced his throwing arm by throwing rocks into the water. He also decided to pretend to be a mud monster and covered himself from head to toe in mud. Who cares, we're on vacation! We did some outlet shopping and considered against taking a train ride. The times the train was leaving was at lunch time and then again at nap time. Oh well, maybe next year. The last leg, we spent at home doing family things. We took the boys and my 7 year old nephew to a children's museum. Wes loved running through the submarine climbing structure and my nephew enjoyed chasing him around. All 3 boys were on their best behavior. We had a special lunch at McDonald's and headed home. We took a couple of jaunts to the pool and more shopping.
I didn't want Wes to get too far away from his therapies so we did some basic stuff throughout the week to keep his mind fresh. We saw some cows at a farm and Wes responded with "mmooooo". I love that he's making these connections on his own.
All in all, it was a good week. I'm sad that it's over already. I'm trying to keep my frame of mind positive and keeping the thought that I can do things with them on my own. It will be much harder to wrangle them alone, but still fun in the end.

Wednesday, July 18, 2007

Autism Walk - New Hampshire

Last night, Tim and I and some friends went to the kick off event for the NH Autism Walk. We've set up a team (Concord Kids) and hope to exceed our goal! Here is a link to my page where donations will gladly be accepted and much appreciated!


Tuesday, July 17, 2007

Mom's Strength

Sometimes I lay in bed before getting up with the kids and ask myself if I can possibly handle another day. I'll admit with some regret that I have to search for a purpose for getting up. Somewhere inside myself I find the strength to face another day with autism.


Daddy takes a stand

Tim hasn't had that many opportunities to put Wesley in time-out. He's done it in the past when we used to use a play pen, but Wesley has learned to escape so we had to come up with something new. Thanks to Super Nanny , I've taken some ideas from her. While I don't call it the "naughty step", I do use our bottom step as Wes' time-out spot. He's become used to staying put for me because I'm no nonsense, or maybe I'm just mean Mommy.

Last night, Wes hit Tim. A rapid fire slap on top of his head. I told Tim that he needed to be punished for that and I've been using the bottom step. I knew that Wes would not stay put for him. He's not used to Daddy being the bad guy. Tim sat him down, told him why he was being put in time out and not to move. HA! Wes got up and ran for the couch all the while laughing at Daddy. I tried hard to stifle a laugh myself but told Tim to walk him right back to the step with no speaking. He did, over and over and over again. It became a game for Wesley but Tim had to stand his ground. I think it took about 10-15 (23 according to Dad) times before Wes actually stayed put. He was testing Daddy and I knew it. So did Tim. Finally the two minutes were up. Tim told him again why he was in time out, that he can not hit anyone and made him say sorry. All was well in the house again.

I'm pretty sure Wes understands being punished. I'm not sure if he understands 'sorry' but we will always make him say it when he has done something wrong. I've made him say it to other kids and to other adults. I don't believe his autism is an excuse for bad behavior and getting away with it. He should be held accountable for his actions just as much as any other child.

Way to go Daddy for standing your ground and taking charge!

Friday, July 13, 2007

One on One

As I've said before, Wes is totally into Thomas the Train these days. His obsession is still going strong. All day long I hear 'Thomas" as he requests to watch a movie. I still limit the amount he watches and when he requests it, I make him work for it.

Last week, he was very good while I had to run some errands so I wanted to reward him. I found a Thomas the Train that races across the floor when you push the drivers head down. At first he wasn't too thrilled with it, but slowly warmed up. Now, I am proud to announce that he and I play with it together! He sits in the same spot between the doorway to the hall and the living room and I sit across from him. We take turns sending the train chugging towards one another and make train noises. I am amazed that he can sit for 5-10 minutes at a time just playing, just being a two year old.

This is a big step for him because he has never shown joint attention nor has he ever participated in joint play. Parallel play is usually what he prefers. I am so happy that I can share in these moments with him. It just renews my faith that my boy will come back to me.

Tuesday, July 10, 2007

It Happened

It happened. It actually happened. I didn't think it would but it did. Let me paint a picture for you.

It was storming pretty bad last night. Thunder, lightening, and probably hail. Anyway, Tim and I finished watching a movie and I was getting ready to turn in. As usual, I check on the boys. I go into Casey's room and a loud clap of thunder sounds. He wakes up, sees me and starts crying. I lay him down, shush him and cover him back up. Then I head to Wes' room. I shine the flashlight in and see that he's okay, but there's an odor. One I recognize right away. I get a diaper and the wipes, take the blankets off him and see something on his face and ear. I know Tim gave him a bath before bed so what can that be? I look down at his hips and the diaper has been pushed down considerably. Uh oh! I ran into the hallway to turn on the light and realize that it's feces smeared on his face, as well as his back, belly and legs. OH MY GOD! Tim was in with Casey who was still screaming. I called him into Wes' room and told him to draw a bath and fast. At this point, the lightening was fierce and the thunder was loud and crackling. We were both nervous since there's a large window in our bathroom but I could not let the boy stay this way until morning. Tim quickly gave him a shower and scrubbed his entire body while I changed sheets. Then I realized that he got some on his blanket. The same one he will not go to sleep without. Fortunately, we have a spare. It happens to be the free blanket that the insurance company gives when a new baby becomes a member. This one is Casey's though. So we steal Casey's and give it to Wesley. Little did we know that Casey is just as attached to his as Wes is. Oh goodie. I brought Wes' downstairs to be washed which would take an hour at the least. Poor Casey cried and screamed for the entire hour until he got his blanket back. I tried rocking, a small bottle, even bringing him into our bed, but nothing worked until his blanket was back safely in his arms. Finally at around 11:30 all was quiet in our house and everyone was back to sleep. Everyone but me that is.

So I've learned my lesson well and the hard way. Wes will no longer be allowed to sleep in just his diaper and t-shirt. He will be forced to wear pj's year round until he's potty trained. I refuse to go through that again.

Monday, July 9, 2007


Tim and I finally got around to doing the paperwork to see if Wesley is eligible for Social Security. We've been meaning to do it for a few months but put it off because of surgeries, baptisms, and other family things. So we dug out the forms, filled them out long hand to make sure we didn't miss anything and then submitted the online form. This was done with some bickering and well, you know. It was just the initial form and not the formal one.

An appointment needed to be made 60 days after filing the document so Tim and took a couple days to make sure we had all the requirements such as bank statements, birth certificate, etc. My poor husband spent a good chunk of today just trying to get through to the office to make the appointment. After multiple busy signals, disconnections and being put on hold for 40 minutes, in less then 5 he was told Wes was denied. Why you ask? Because Tim makes too much money. Uuuhhh WHAT?!?!

Now mind you, we aren't dirt poor, but we aren't living a comfortable life either. We make just enough each month to pay the bills, put food on the table, and clothes on our kids backs. They come first. That's all. Tim is in need of a new vehicle, but we can't afford new payments. He owns his car and it has well over 200,000 miles (I don't know the exact number). Every year we need to scrape up money to repair it so it passes inspection and makes it through another 12 months. We we're really hoping this money would help us out with groceries and buying Wes clothes when he needs them. Casey just wears hand-me-downs.

So now I need to fill out more paperwork in the appeals process and cross our fingers. I can't understand how a government who is supposed to help people turns away a child who is disabled because my husband makes too much money. Where does it go? Again, we don't live a luxurious lifestyle. And around we go!

Saturday, July 7, 2007

Bits and Pieces

I think I've mentioned before that Wes typically eats the crust off of sandwiches before eating the rest. Well, first it was only the crust off sandwiches, and then it was crust first. Today was something new.

Wes eats the same breakfast almost every morning. Save for the times we have pancakes, he eats Eggo Waffles just about every morning. We vary the flavor between blueberry, strawberry, and apple cinnamon. This morning was the middle of a blueberry round. Instead of eating it like toast, which is how he usually eats them, he broke off pieces of the Eggo and ate it that way. Seemed strange to me, but I'm glad he's experiementing.

For dinner (we cycle through the same meals at dinner time too) Wes had PB and Fluff (or marshmellow depending on how you call it). He picked off the crust and ate it. Again, he would bite off the crust and then eat the rest of the sandwich, but not tonight. I watched as he picked off the crust off of all 4 squares and leave the rest of the sandwich. I find it interesting. I have no idea why he's doing this but as long as he's still eating something I don't care.

I also got him to start eating apple sauce again. He went on a strike for awhile so I stopped offering it to him hoping he would start up again in a few months and sure enough. Every time he took a bite he would say "Mmmmm yummy". I got him to mimic me saying applesauce and when he did I told him he was a smart cookie. This resulted him repeating "Mmmm cookie". Of course he got a cookie for that!

Wednesday, July 4, 2007

Grace strikes again

I'm not sure what is going on with Wes the last month or so. He has been more clumsy then before. Walking into walls, falling down, tripping and lately, falling down the stairs. I feel like such a bad parent because of all the bruises and bumps this poor child has. I used to joke around and call him Grace before we knew about his diagnosis and why he was so awkward.

I discussed it with his OT and she thinks he might be going through a growth spurt and losing body awareness. He improved for a week or so, but he's back to being really clumsy. I'm not sure if it's a growth spurt or if he's just not paying attention.

Tim was walking behind Wes down the stairs on Monday when Wesley missed a step and came crashing down the last half of the stairs (it's only a couple of steps). He lunged for him, but couldn't grab ahold. I was sitting on the floor playing with Casey. The poor kid was more shocked than anything. I cuddled him, made sure nothing was broken and within 2 minutes he pushed away from me and went back to playing. He has such a high tolerance for pain that it scares me.

Today, while I was walking him down the stairs (holding his hand), he slipped and I had to pull him back up by his arm. This also scares me because he is hyperflexible and I worry about pulling his limbs from his sockets.

He is no longer allowed up or down the stairs unless one of us is with him. Occasionally, he would come downstairs alone if I was busy with Casey upstairs. We've now gated them at the top and bottom.

I'm just waiting for the call from Child Services accusing me of abuse.

Tuesday, July 3, 2007

Generally Speaking

One thing that Wesley will need to work on is realizing that items with the same name can look different. He needs to understand generalizing objects. One thing that he is currently working on is expressive language. This is being able to label an object correctly. He has mastered labeling 'pig' and 'duck'. This just means that when his therapist holds up a model plastic pig or duck, he needs to correctly say which one she is holding up. Once he's mastered labeling objects correctly and without problems, his therapist will start using general objects so he won't think that just the toy is a duck and only white ducks are ducks.

With that being said, we took the boys to a local park on Sunday to feed the ducks. I enjoy feeding them and seeing which one out of the bunch is brave enough to eat out of my hand. We took the boys out of the car and headed to the pond. As soon as the ducks were in sight, Wes said "duck!". I looked at Tim and he looked at me and then we both burst into praise! He correctly and clearly labeled duck! He knew what they were without us telling him! That is amazing. These ducks look nothing like the plastic toy that he's used to seeing. Let alone all the pictures in books and such that use a white duck! These were brown mallards and he was able to distinguish that they were indeed ducks!

I'm tempted to bring him to a local farm and point out all the animals he's familiar with such as cow, horse, pig, dog, chicken, sheep, etc. Maybe if he can see these out in our world, he'll have a much easier time generalizing those as well. It would be interesting to see if he can label those without a problem as well.

I've said it before and I'll say it again, the boy simply amazes me with his abilities and his drive to learn. I am fairly certain that by this time next year, I'll be able to actually talk with my son and hopefully get a meaningful response back.

Fast Forward

It's been nearly 9 years since my last post. Wow, have things changed! I'm not sure why I stopped posting to my blog. It was mos...