These little gems are what we like to call in our house “Crack” Crackers.
These are kept in a secret location in our house and not given as a snack but rather as a bribe, ahem, I mean reward. Our boys love these crackers! They would eat these things all day, every day if given the opportunity. It is just this particular brand of rice cracker. Read More
I realize that this was supposed to be a series of pictures but I was inspired today while on a picnic at the park with the boys so I am writing this one.
One of the issues parents say they struggle with is staring from other people. They really don’t like it. We were always told when we were young that it is impolite to stare at other people.
Here is my take. I actually don’t mind it, in fact, I would even like to encourage it. Yes, you heard me right. Read More
I had a rough day today. I had just arrived home from the chiropractor because I had a sprain in my back when I got a call from the summer camp folks where Andy and Ethan were. Andy had a seizure on the bus on the way to an outing. They had pulled the bus over on the side of the road and called the ambulance, then called me. Read More
Today I have just Andy home since he finished school for the summer a couple of days before Ethan.
I had some errands to run so I thought, this is great, I have just Andy, I can do this. So we went out to the car and Andy got into the front seat and closed the door by himself and handed me the seat belt to do up. Now this probably doesn’t sound like a big deal but compared to the usual, this was a nice change. Usually with the two of them, I am trying to manage Ethan and give Andy instructions at the same time. When I don’t give Andy my undivided attention when giving instructions, he often won’t follow through and will need hand over hand assistance. Then I get Ethan situated in his his seat with his seat belt as well. So this was a nice change. Read More
It was a beautiful evening and I actually had a meeting I was supposed to go to but because I had just been gone for a couple of days on a ladies retreat and the boys were at respite, I decided I was going to skip the meeting and hang out with the boys.
We went out front as Andy wanted a change of scenery from the back yard and was running up and down the driveway. He kept running onto the road so I thought I would get the bubbles out to try and distract him from his current activity. I had a small wand for blowing bubbles with and it held no interest for Andy whatsoever. He did move from running out on to the street to ripping leaves off the shrubs and Tanner the cat, was trying to catch those bubbles.
Ethan and John came out too and sat on the front porch. Ethan was fairly happy but Andy was getting agitated that he was being led away from his antics of shrub masacring. He was clearly looking for the wrong kind of attention so I decided to take them for a drive. We packed them up and I headed off in the usual direction for a nice little wilderness drive.
Andy sat in the front seat and then proceeded to try and open the door. He was still in the mood to cause trouble. I got the van moving with Andy inside and the door closed and rolled down his window and he was glad from then on to wave at everything we passed by and feel the wind across his arm.
I turned on a little Chris Tomlin and sang out loud with windows down “I know who goes before me. I know who stands behind. The God of angel armies, is always by my side. The One who reigns forever, He is a friend of mine, the God of angel armies, is always by my side!”
The other day I took Ethan out to Walmart to spend the gift certificate he received as a gift at Christmas time.
It started off happily as Ethan loves one on one time. He helped me push the cart but when we had to get a few groceries first he got really excited and decided to wander while I stopped for some juice. I had to abandon the cart to go fetch him as he was not responding to my calling him back. Ethan is notorious for ignoring when his name is called. It is something on his IEP but they are not able to work on that in grocery stores so I think I need to take him with me a couple of times to teach him this very important skill.
We got our groceries (including Ethan’s favourite Natural Ham Meat slices and a bag of completely unhealthy Frito Lays Corn Chips) then headed on over to the toy department to check out the toys and went down the isles to see what peaked his interest. There was a huge box with an assortment of musical instruments that I pulled into the cart for him to try and he touched a couple things then continued meandering down the isle. So my Ethan doesn’t want to learn to play a plastic guitar with lights and sounds.
He stopped at a flashlight shaped like a long giraffe’s neck with the light coming out of it’s mouth. The light shines and there is a picture of a frog illuminated with the light. Ethan has had and enjoyed a couple of flashlight toys so we put that into the cart.
I had discovered a toy tablet with big buttons and lights and sounds and a cute tracking ball on it so I showed that to him and he seemed interested so that went into the cart as well. Then Ethan found a package of little people plastic figures (he loves to chew on these) so we put that into the cart and off we went to a scanner to find out what the prices were. It was a really good deal for those items so we headed off towards the check out and on the way he spotted a pillow and grabbed it. It was only $4.97 so why not, in it went. His pillow at home was pretty flattened and with the flu bug he just had, I wouldn’t mind throwing the old one out.
We had an interesting time trying to get the Frito Lays out of Ethan’s hands to check them out but he ultimately handed them over and the lady at the check out immediately handed them back to him once they were scanned.
It was poor foresight on my part when I chose the check out that was right next to the McDonald’s so Ethan was going for it and I had to hold onto his coat while loading up the cart and paying for the stuff. He is a strong kid and very fast so this is getting to be hard to keep him from running full tilt towards the McDonald’s and doing who knows what when he gets there. There was a line of people and he was not eager to stop. Then I realized he wanted to sit down there so I let him find a seat and sit down. Still clutching the Frito Lays, I figured he wanted to sit down there and have his snack. I opened the bag and held one out for him and like a puppy wanting a treat, he followed me out the door and out to the car. So we used the completely unhealthy Frito Lays to lure him out of the completely unhealthy McDonald’s restaurant to avoid buying the completely unhealthy french fries.
Now I am sure that there are all kinds of errors in the way I handled that situation but I am just thankful that there was no screaming melt downs and no mad dashes throughout the Walmart store with products littering the floors in his wake. Those pictures were going through my mind as a possible outcome to be completely honest with you.
We did however encounter the melt down in the van on the way home. He had a handful of Frito Lays and I could not figure out what he was so upset about when I realized he was grabbing the bags behind him looking for the lunch meats…. sigh, he wanted some ham with his Frito Lays.
So the lesson here is a well intentioned mommy time trip to the Walmart does require a good deal of planning.
For instance, avoid the chip isle where the Frito Lays are. And if you purchase the favourite lunch meats make sure they are taken out of the bag when you get to the van and place it on the front seat where there is easy access.
Bring along a favourite object to keep him occupied while purchasing the groceries and always chose the check out that is furthest from the McDonald’s and avoid having to pass it on the way out of the store!
This morning we had to take Andy in to get an EEG because of the seizure he had last week.
I have to say that I was quite impressed first of all with the hospital staff and paramedics who tended to Andy that day last week. They were very aware of the way Andy might be feeling or responding to the different treatments and they adjusted when they noticed he was not doing well. They had many staff on hand when he got his needle and they were talking to Andy even though they knew he did not talk. They asked us questions about how would be the best way to go about doing things.
This morning was a different story. Although we were happily surprised to see an old friend of ours from our youth group years, behind the reception desk, once past her pleasant face and into the hands of the technician, we encountered what we like to call “Autism UN-Awareness”.
It kind of boggles me how a medical professional would not be aware of the different needs of patients with different medical conditions. When you call a plumber to fix your drain you expect him to be knowledgeable about every type of drain and the problems he might encounter to try and avoid while fixing your drain. I would think that I could expect the same from someone in the medical profession who is treating my child. In fact, I would expect more care when it comes to real people and children as opposed to objects.
The three of us were following the technician into the room when she said only one of us could come in to which John said “Are you going to hold him too then? He has Autism.” She said “No, I am going to be back here behind the computer. I can’t fit 13 people in here.” I think if Andy could talk, he would have pointed out that there were only 4 of us all together.
I deposited our bags outside the door to help calm her claustrophobia but promptly returned to the room since I knew probes on Andy’s head was going to require a person holding his hands and a person holding his head or shoulders.
A cap was placed on his head with holes around it and she had a syringe where she squirted gel into the holes. I’m sure it wasn’t that long a process to the average person but when you are bent over a squirming 14 yr old. holding him down and trying to keep him from taking the whole thing off, it seemed like a very long time.
One sensor was placed on his forehead below the rim of this cap between his eyes and a piece of tape placed over top. Right away, Andy wrinkled his brow moving the sensor. John asked if the sensor could be placed under the cap but no response from the technician who then began sticking the syringe into the holes just to move the gel around. More squirming and I must have replaced that one sensor 20 times as Andy wrinkled his brow and in the middle of the test, he somehow managed to squirm the cap off his head. The technician said “well that’s done now”. So then we had to start over again.
Meanwhile the whole time, I was also trying to hold on to the IPad that was playing Andy’s favourite movie to distract him from the poking on his head while holding his shoulders down. At one point I said “This test was not made with squirmy people in mind was it?”
Finally, she took that “forever moving” probe and put it under the cap, like John had suggested in the beginning, and was able to finish the test. I think all of us breathed a collective sigh of relief.
She told us there were a few good readings that could be salvaged from the test. I wanted to say “That’s good because we won’t be doing that again anytime soon!” but I bit my tongue.
Now I am not ignorant of what it is like being pushed and kicked and talked to rudely. It is something I experience on a daily basis. I understand that medical professionals encounter all kinds of behaviours from patients and I can sympathize with them. But I do know that a little knowledge can go a long way to making things much better for both the professional and the patient.
Why not have a questionnaire when speaking on the phone to ask questions like maybe “Does the patient have issues with wearing hats?” or “Will the patient be uncomfortable with poking on his/her head?” These questions would help technicians to be more prepared for the appointment which would in turn make the process a lot smoother.
Even if such questions weren’t asked and the technicians aren’t prepared, for goodness sakes, listen to the parents! What possesses a technician to ignore and even be rude to a parent when they are trying to help them with suggestions?
Now this was actually a reasonably good reaction from Andy. We knew he was going to squirm but we also knew there was a great potential for him to get anxious about the whole thing and start to cry, scream, thrash, bite his wrist and hit his head. He did very well and the technician did not have to handle the squirming one bit from behind that computer.
We have a long ways to go with Autism Awareness and we need to start with the professionals that will be encountering individuals with Autism under unpleasant circumstances.
My advice for professionals would be to
1) Get up to speed on the latest information. Someone working with computers has to constantly keep their skills updated on the latest software. Know the latest on patients, i.e.: who and what you will be seeing more often within your office and what tips are there to make this procedure more pleasant.
2) Be prepared by asking key questions before the appointment! Start with the obvious ones like will the procedure be resisted? or will the procedure cause anxiety? or are there any medical conditions we should be aware of?
3) Listen to the caregivers! Don’t insist on putting every patient in a neat little box. That never works and 9 times out of 10, you will be disappointed. The caregivers know the patient and may actually have neat tricks that makes everything better!
4) I am only saying this for the sake of ridiculous policies that are not possible with my boys (ever) but here it is… rules are made to be broken. I am not condoning the breaking of laws as such but rather the incredibly silly policies that don’t consider patients with special needs. Please, Please stop insisting on kids and parents doing things they can’t do.
It was funny today when we got home the local newspaper had a picture on the front page of a man with the same cap on getting an EEG.
A friend on Facebook had posted a request for ladies to post what they have accomplished today as a way to encourage each other and give each other a pat on the back. I think it’s funny that all of us (myself included) could manage to get all the stuff done that we did and still find the time to post about it too. I suppose we are well known for multi-tasking.
I had painted two doors this morning. It was a second coat. I then moved on to cleaning the bathroom while the paint dried. It is funny how when you clean, the more you clean, the more you notice how much more needs to be done.
I was cleaning the counter in the bathroom when I noticed the marks on the little mirror that sits on a stand. As I was cleaning up the marks it reminded me of the time last week while John was away. Andy and I were in the kitchen and Andy was being just down right cute and playful and I decided to get the mirror out of the bathroom for him to look at himself.
Sometimes Andy really enjoys looking in the mirror when he gets out of the tub. He is told very often how cute he is and I think perhaps he thinks it too judging by the way he smiles when he sees himself. I would have to say that I don’t think he compares himself one bit to anyone else and I love that my boys aren’t even slightly affected by the green monster. With the exception of food of course.
Well Andy was taking a good close look at himself and kissing the mirror. I am not going to make this a spiritual analogy on vanity or self esteem because I really have no idea what is going on inside his head when he smiles at himself. Perhaps he is just copying me since I can’t help but smile when I look into my sweet boys faces. Perhaps he is experimenting with his face and seeing how to move his eyes and lips.
I really don’t know what is going on in head but it makes me really happy when he sees himself and smiles. The fact is, he is a creation of God who in so many ways reflects who created him. I was reminded this week by one of my son’s friends that even though Andy can’t talk, he can still show love.
God is that way too. We don’t hear God’s voice but we see evidences of His love. A verse, a call, a hug, a letter, a message from the pulpit or a friend’s encouragement. All good things come from above. God’s kisses.
Thanks Peter 🙂
One of their favourite things to do is swing.