Stomach Pain, Journals & Elimination Diet

At the end of November,  I took Lego to see Dr. R about his tummy pains. After giving him the complete run down of everything that had been going on and what we had tried, he suggested that we try an anti anxiety med because anxiety is linked to stomach pain. He also suggested that we start Florastor which is a Probiotic to help balance the bacteria in his stomach. It seemed to be working quiet well for most of December.

Then Christmas holidays started. Christmas Eve and Christmas day were great. They were the nice, quiet and mellow celebrations we needed. On the 27th though, Bright woke up with RSV (which is a very nasty cold that affects the respiratory tract) and Music ended up with a nasty cough too. So I loaded up the kids and headed an hour out of town to a walk in clinic to have them checked out. Bright needed another inhaler which I completely expected and Music had a viral cold so it just needed to run it’s course. Since we were there I asked the doctor to check out Lego and Monkey just in case. Both boys were healthy. Great only 2 out of 4 are sick. Completely manageable. The next morning Monkey woke up with the cough too. By this time, we haven’t had much sleep but that happens when kids are sick. We spent that whole day relaxing and watching movies and not doing much of anything else.

By the 30th we were all exhausted, and I noticed that Lego seemed out of sorts. He was going to the washroom very frequently and he was complaining of a sore tummy. He was very gassy too which was not helping matters at all. By 10:30 that night he was pale, tired, and I tried to give him another bath just to see if the warmth would help. I noticed that his tummy was very bloated again so I kinda figured I knew where this was headed. He slept upstairs on the couch that night to be close to the washroom (one down fall of having Music & Lego’s rooms downstairs with the washroom upstairs) and seemed to be alright until about 1:30am. Something woke me –  a yell, so i checked on Bright and Monkey and they were fast asleep. When I came to check on Lego he was very restless on the couch but seemed lethargic. I woke him up and he said his tummy hurt so bad. I tried to convince him to have another bath but he didn’t want to. I convinced him to go to the washroom in case he was going to be sick. We made it just in time. After he was done he lied on the bathroom floor and I went to get the phone to call health link. Instead of going straight to the hospital you can call them and give them a list of symptoms and they tell you whether you should go to the hospital right away or if you should give it some time. I was on hold for about 10 minutes when I hung up and called our hospital. I told the nurse what was going on and she could hear Lego crying and screaming in the background. She told me to bring him up and they would call the doctor.

He was in so much pain that just moving to put his coat and boots on made him violently sick again. Once he was good to start moving around I got him up to the hospital. The nurses were awesome and they got him checked in and gave us a room. I think it was about 2am when we got there. After a little while up there he fell asleep so they waited to call the doctor. The doctor showed up at 11am that morning just as Lego was waking up. He did a really good assessment on him and had read all of the previous history before he even came to talk to us. His conclusion is that it’s most likely IBS, so we needed to start watching what he eats and drinks. He also told us to rule out Celiac disease which is something we have already done so I agreed that more than likely this is what we are dealing with.

Once we made it home I started doing some research. I was surprised to find that a lot of staples in our house were things that could affect him. We cook with onions in almost everything, so now for him no more onions. The same goes for cabbage, green peppers, and too many other things to list. So I decided to cut these specific foods out along with gluten because I found out it can sometimes make things worse. I also started a food and drink journal so we could keep track of anything else that may bother him. It’s a lot of work but I will do just about anything to keep these stomach pains away.We are now on day 8 and the most troubling sign we are seeing is his tummy bloating. I am calling Dr. R’s office tomorrow to schedule another appointment and ask to be referred to a gastro specialist. I’m hoping we can get this figured out really soon.

So far with the diet changes though he has been handling everything really well. Most of the stuff I have gotten that is gluten free actually tastes not too bad. I was quite impressed. One thing I am concerned about though, is that tomorrow is the first day back to school. I’m worried about how I am going to handle lunches, along with any changes he is feeling throughout the day. As for the other 3 kids, everyone is feeling great… just very bored because it has been too cold out to do anything outside of the house. Our holidays didn’t quite go the way I expected but then again.. it rarely does I guess.

The Tummy Pains That Just Won`t Go Away & The Waiting Game For Answers

The past month has had its really good days & it’s days where I just want to hide under the covers. It’s hearing of the dreaded tummy pains that come and go. Lego has complained of them off and on over the last couple of years and I always attributed it to a tummy bug of some kind. For the most part, there were physical symptoms so it was easy to see that there was something going on, but it always seemed to pass.

Over this last year though something has changed. Lego mentions it almost daily now. And sometimes its really hard to tell if he is saying it because he doesn’t feel like doing something, or if it really is hurting him. We have tried using a pain scale but the concept of it is too abstract for him. Last week he was saying he was at a 10 which is really severe pain, but yet he was sitting on the couch smiling at the screen on his iPad because obviously his game was going well. Then there was another time when he said he was at a 4 and he was curled up in a ball, his face white as a ghost and not moving or saying much. I can’t take this guessing game anymore. I hate seeing my sweet Lego like this.

Last month I took him to our family doctor, who ordered all the regular tests they could run, as well as an ultrasound and a barium swallow. The regular tests came back with nothing, and so did the ultrasound. So I was sure that we would find something with the barium swallow.

Let me tell you, this is not easy for a kid that does not like certain textures of foods and liquids. If you don’t know what it is here is a quick run down. You have to fast before going in for the test – which is not easy for a kid that likes to eat the second he wakes up. Then when they bring you in, they make you drink a liquid that makes you very gassy and burp a lot. As soon as you get that down, they make you drink this very thick awful tasting paste and you have to get it down as quickly as you can. While you are drinking it they are taking x-rays and can see it as it slides down your throat. Then they lay you down and take a bunch of x-rays while you roll around like you can’t get comfortable. The test its self only lasts about 10 minutes but as Lego said that seemed like a long test. He said he could taste the paste the rest of the day. And now for the hardest part we wait.

I hate waiting. It means stressing out for answers that we may not get anyway. What happens if the doctors don’t find anything this time? Where do we go from here? I know a little bit about what comes next and to be honest I’m not sure I will put Lego through that for right now. Talking with one of the most amazing ladies in our network – and trust me there are so many I now know, she is going to get me in touch with someone in our Network, that also has a child with FASD who struggles with abdominal pains. I know this can be part of the trauma from what my drinking while pregnant caused. The guilt is still there. And I know I shouldn’t feel guilty but I do. As a mother, I am supposed to protect my child but some days I feel like I failed him. Maybe this is why I have always seemed to fight harder for answers for him. So for now, I am going to keep looking for ways to help him so that he can have more good days than bad. What is around the bend remains to be seen, but I will not give up. For him. He deserves everything I can do for him to help make each day just a little better.

International FASD Awareness Day – September 9th

The first International FASD Awareness Day was held on September 9, 1999. This day was chosen so that on the ninth day of the ninth month of each year, the world will remember that during the nine months of pregnancy a woman should refrain from drinking any alcohol.

This year I had the opportunity to help out our local FCSS office with the International FASD Awareness Day barbecue that they host every year. It was a lot of fun to be able to connect with youth and adults alike and talk to them about FASD. I was, however, very shocked to learn how many of the youth & adults didn’t know what FASD stands for. Almost everyone I talked to, I asked “What is the number 1 reason a mother would drink when she was pregnant?” I heard answers such as “because they want to have fun”, “peer pressure”, or “because they only want to have 1 or 2 drinks to relax”. Almost all were shocked to learn that the number 1 reason a woman drinks is because she does’t know she is pregnant.

If you think about it over 50% of pregnancies are unplanned so that leaves the risk for pregnancies affected by the use of alcohol to be very high as well. Research estimates that 9 in every 1000 babies born in Alberta have FASD each year. We need to do more to make society aware of FASD.

The barbecue went for about 2 hours and we were able to talk with nurses, by law officers, teachers, parents, & students, as well as some staff that work in the town office. We gave away water bottles, stress balls that look like brains, pencils, and pens. We had a really good turn out again this year. Next year I would love to be able to connect with even more people. The lady I work with has a saying that I absolutely love “No shame, no blame”. I hope that one day the stigma will be gone.

This is why when I had the opportunity to get my tattoo, I decided to get the FASD ribbon with a heart and the word “Hope” underneath. I have hope that my son will be able to learn more, now that we know better ways to work with him. I have hope that one day he will graduate high school and go to college. I hope that one day he will become a productive member of society. I hope that one day the world will forget the stigma surrounding FASD. I have told my son that this tattoo was inspired by him, because I love him and he gives me hope too.

 

Professionals Without Parachutes Training – Session 1

Between processing the information I learned at the Professionals Without Parachutes training I took in June, Music & Lego’s camping trips, spending time at my grandma’s farm where there is no service, & getting organized for the upcoming school year; the past 2 months has been very busy and I have not had much of a chance to keep up on my blog. So with that, here is some of the information I learned at the first Professionals Without Training session.

The most important thing I learned that has stuck with me in my day to day activities with Lego is how his brain actually works. This is how Tracy Mastrangelo & Jackie Pei broke it down to an analogy that anyone can understand.

They explained how an FASD brain is affected in utero by alcohol. The Glial cells are the scaffolding cells for the neurons that make up the brain. The brain is built from the stem upwards. Think of it as stacking building blocks or scaffolding. When alcohol is introduced to a developing brain, then the neurons sometimes lose their way and get lost, or they end up where they should be, however they change the message they should have had so they won’t work properly where they are at. Other neurons that are affected by alcohol will simply suffer too much damage and get lost so they die, not making it to where they should be. So now what happens is that you have a brain that has cells in the wrong areas of the brain, cells that are in the proper areas of the brain but have the wrong job so to speak and you have cell gaps that are there because the cells simply died. Different times alcohol is introduced will affect different parts of the developing brain.

Now as a child with FASD grows, we know that they have trouble processing information. Think of the brain a 2 lane highway and the trucks and cars that are on it. Now imagine that those cars and trucks are information coming into and leaving the brain. If that highway is paved going both directions, the information is getting where it needs to go without a problem. Now if it’s 1 lane paved and the other lane is gravel with the same amount of traffic, then it would slow down how fast the information is getting to its destination. But it’s still getting there for the most part. Now imagine that you have the same amount of traffic as a paved highway but both directions are gravel – this would really slow down the information from getting where it needs to be. And what would it be like if we had a single lane gravel road with traffic going both directions? There would be a lot of crashes and traffic is at a stand still. So nothing is getting where it needs to go. This is why people with FASD have trouble processing things. Because of this I now understand better how Lego’s brain works. I also learned that FASD looks different in each individual. It is a spectrum and that it is a consistent pattern of inconsistencies. The same person will function differently on different days and it is far more noticeable.

There is a stigma that people with FASD, their caregivers and support workers face everyday. The stigma and understanding surrounding FASD NEEDS to change. These kids are not bad kids just misunderstood. A new idea that really stuck with me is that ALL behavior is functional. There is a reason it is happening and we need to find out what it is so that we can change what we do, which will eventually help change the end result. I also learned that as a care giver that it is okay to feel like I failed; I just need to change it a bit and try again to help my child be successful. With this population, new needs to be tried everyday to find success.

Also, I finally understand why Lego has trouble sleeping at night and why he is so hard to wake up in the morning. His brain produces less cortisol in the morning which means he is harder to wake up but by the end of the day his brain has produced more cortisol making it that much harder to go to sleep. A normal brain produces more cortisol in the morning which decreases throughout the day making it much easier for someone else to go to sleep.

They broke us off into groups so we could talk about struggles we had as care givers and support workers and things we felt needed to be addressed. From this i learned other strategies that I never would have thought of. I also learned from care givers that came from other countries, were brand new to this because in their home countries its not something that is very commonly acknowledged. Another thing that was said that stuck with me was that the brain is a filing cabinet and for most people everything is filed in order for the most part; but for a person with FASD their filing cabinet is completely out of order and scattered all over the place so it is much harder for them to recall the right information when asked. Diet was another issue that most of us had at some point dealt with. Some people with FASD do better on a very strict diet while others seem to be able to eat whatever without any issues. And when it comes to school, its okay to take a day off to give them some down time if they are having a really bad day. One parent had said that when his son is having a really bad morning, once in a while they keep him home and he spends the day with him at his job or at home to give him a rest. He’s still learning life skills by doing this. Another interesting point that was brought up and only touched on breifly, was how the body ages & changes differently in someone with FASD. I am hoping to learn more about this later.

Another point that was mentioned and is very obvious to most of us, was that FASD isn’t always diagnosed because mothers are scared to come forward. I fully understand this feeling. I was terrified to think what other people would think of me as a mother. But my child comes first, and he needed help so that was more important. Now I don’t care what anyone thinks of me. I am doing the best I can for my child. And I hope with this, that I can reach out to other mothers who are going through what I did, and tell them that everything is going to be alright.

There was so much that I learned at this first session but these are the key points that have stuck with me. I hope this has helped you understand FASD a little better. Because I know it’s made a difference for me.

The Look of Horror When I Tell You My Child Has FASD

Something has been bothering me for the past while. As much as I have tried to forget about it… I can’t. It’s eating me up inside.

It’s that look you get from someone when they find out your child has FASD (Fetal Alcohol Spectrum Disorder). I never meant to have this happen to my child. I never meant to hurt him. I didn’t want his brain to have permanent damage. But it happened… and I can’t change it. I love him and I always will. He deserves the best I can give him and it has been a struggle with many ups and downs, but still, I am thankful for each day.

The day Lego was diagnosed, I was considering just telling everyone that he was autistic. I didn’t want to admit this mistake… this damage that I had inadvertently caused my child . But over the next couple of weeks I started considering this thought. I couldn’t lie to people and say he was autistic because he wasn’t. He has FASD and that will never change. No matter how much I will it away, it will always be there. Over this period of time while I was entertaining this idea, I hadn’t noticed a change in myself, but when I did, it was like I hit a wall.

About 2 weeks after the diagnosis, I decided that I couldn’t say he was autistic. That was just wrong to say. I thought to myself that I could either sit in a corner, cry my eyes out and shut out the world completely, or I could pick myself up, dust myself off and do something about it. So that’s what I had decided to do. I felt this had happened to me for a reason and I was meant to do something with this. I just wasn’t sure what that would be yet. Tech and I talked it over and he agreed that maybe I should do something but what that was he wasn’t sure. I told him I would figure that out. The next person I told was my mom and she cried. She was so happy that I had come to this decision because she didn’t want me to feel like I had anything to hide.

Just after I decided this, I started this blog, as a way to release some of my thoughts, feelings and to let others know anything new I am learning on this journey. Please remember that because this is so new to me, and my family, I haven’t fully figured everything out yet. I’m still learning about FASD and how it affects my son and how it affects others. It is like the autism spectrum as where no two people are exactly the same.

Just recently I went to my youngest son’s (Monkey) IPP meeting for transitioning to kindergarten. It was while in that meeting that I really encountered that look for the first time. There was myself, Monkey’s aid – Mrs. Wonderful, his Preschool teacher, the Kindergarten teacher that he would have next year – Ms. English, a speech specialist and our area’s PUF coordinator.

The look came from his preschool teacher when the PUF coordinator asked if Monkey was still going to be tested for FASD next year. Now, I am sure I told the preschool teacher that Lego was diagnosed with FASD, because it was even mentioned in the last IPP meeting for Monkey that he would be tested when he turns 6, because Lego and Monkey are very similar in a lot of ways (this is all for precautionary reasons). The Preschool teacher has been at every IPP meeting this past year so she knew it was in the IPP. That’s when the preschool teacher looked at everyone else but me and said “FAS?! Isn’t that Fetal Alcohol?” and everyone went silent and waited for me to say something. She gave me the look of horror that made me feel absolutely horrible and in my own mind all I could think was “She hates me and is disgusted because she can’t understand why I could have done something so horrible to my child, when it is preventable.” And she just kept staring at me. I finally found the words somehow to say “Yes it is.” And then I couldn’t hold back the tears anymore and I completely broke down. The other team members were very understanding to the situation and not once did I feel judged by them. I felt supported, so I took a few minutes for me to regain my composure again so I told her ” You need to understand that he has FASD, and that there were so many factors in our situation, that they really couldn’t say that it was completely due to alcohol.  Between the abuse I suffered when I first became pregnant, the alcohol I consumed before I knew I was pregnant, the stress of my relationship breakdown, the medications they had to give me to keep me from having a nervous breakdown, a tooth infection and extraction when I had 6 weeks left to go in my pregnancy, and Lego being born blue with the cord wrapped around his neck all played some small role in this.” When I finished I broke down again but quickly regained my composure. The teacher looked at me and apologized and said “At least you’re was doing something to benefit your kids now and that obviously I never meant to hurt him.”I know she tried to make it better, but the damage was done. I was so hurt and angry that someone that works in the school system can judge me just like that and then try to apologize and make it better. I rally had nothing left to say after that. We wrapped up the meeting just shortly after and walked out to my vehicle where I sat for 20 minutes and cried like a baby. I felt so humiliated and I felt like I had failed my child. What gave her the right to judge me like that when she had no idea what had happened at that point in my life. I was angry. And that’s when I decided that people really needed to change their understanding of FASD.

So please, when someone tells you that their child has FASD, please don’t judge them. Don’t give them ‘That Look’ . You don’t know their story. Maybe the child’s parent is the birth parent. You have no idea the guilt they carry every day – I know I do. Maybe the child is a foster child or adopted. Foster parents and adopted parents get ‘That Look’ too. And it still hurts just as much. Ask about their story, and if they are willing to talk about it, you might learn something new. If they are not willing to talk about it, don’t push them. Just tell them that you’re there if they ever feel like talking. Parents of Kids with FASD just want their children to be accepted and understood just like everyone else.

 

A Trip Of A Life Time: Conquering Fears

Drumheller

The past few months have seemed pretty crazy around here for us. But this month more so than others. Lego and I went with his class to Drumheller for a 3 day, 2 night adventure. He had been really emotional and angry for about 3 weeks before the trip but none of us clues in to why until the day before we left. His teacher had asked them to write a paragraph in class about what they were excited about and what they were not excited about. His whole paragraph was “I don’t want to go” written over and over again. His teacher told him that he couldn’t miss out because it was going to be so much fun.

The next morning getting Lego ready was like pulling teeth. We managed to leave the house on time, so for as rough as it was, it could have been worse. The school had rented a charter bus so Lego thought it was really cool that we could watch movies, but when it came time to pick a seat, he got a sad look on his face and said he wanted to sit in the back with his friends but nobody wanted to sit with him. I asked him if he wanted to sit with me but he just shook his head and moved up to the very front of the bus by himself. I was heartbroken for him, and before I could even get to him one of the other mom’s who works with him at scouts, took him by the hand and got him settled into a seat near the back with the rest of the kids. She helped him engage the other kids and then she quietly came back to her seat. I thanked her with tears in my eyes because had I tried to do that it very well could have caused a meltdown.

It was a 6 hour trip from where we live so I talked with his teacher for a bit. This is when he filled me in on the paragraph Lego had written the day before. Again, I teared up because this was one of those situations where it was very apparent that Lego was struggling with not knowing what was going to happen. I told his teacher that I had been dreading this as well because I wasn’t sure how well he would handle everything and I didn’t want to hold everyone else up in turn. We talked some more and I decided that I was going to take the opportunities given on this trip to face some fears and show Lego that when the opportunity arises, sometimes you need to try new things.

As soon as we got to the Royal Tyrrell Museum, we were hiking the badlands with a tour guide. Lego actually did really well and really tried to answer the guides questions. It was really hot that day so the sun was bothering his eyes. I gave him my hat but he really didn’t want to wear it. Once we were done the hike, we were led to the cafeteria, where they had snacks prepared for us. We got a rundown of our itinerary and then it was off to the next activity. We had to wander the museum, and answer the booklet of questions we were given. Because Lego has a hard time reading, I was given the answer key. We only had an hour to find the answers and it was going to be a bit more challenging than I thought. What I did was read the question to him and then also give him the first letter of the answer we were looking for. When he would find the answer I had him spell it out loud and I wrote it down for him. This worked out awesome and he was able to get it finished.  Then the class was led to an onsite classroom where they played trivial pursuit about what they learned earlier in the day. When we had supper, Lego was so hungry that he actually ate a decent sized meal. Once supper was finished we headed to another onsite classroom where we got to look at fossils and then make our own fossil castings. As soon as we were done this activity, we were on to the swimming pool for an hour of fun. Then it was back to the museum for our last snack, and finding a place to set up our beds in the Hall of Dinosaurs!! Lego had a hard time going to sleep that night but once he was asleep he was out. I didn’t get much sleep that night however, there was too much noise. Sometimes I really hate being a light sleeper.

Drumheller 3

The next day they woke us up with an announcement over the loud speakers, threw on all the lights and then played “I Am A Paleontologist” and it was so funny to wake up to. After breakfast we got to head to the gift shop and picked out a couple of cool geodes to bring home. The last activity was playing another game in the theater to show how much we learned. Once we finished this we gathered up our bags and loaded the bus for the next adventure at the hoodoos. The kids had a lot of fun climbing but we decided that the trail was a bit washed out for them to keep climbing. There was a cave about 3/4 up the hill and I turned to one of the teachers after the kids were down and said ” You know, I think I can make it up to the cave” and her response was “Absolutely if you want to give it a shot then go for it”. So I did. I did make the mistake of not having water with me and it was a tough climb but I made it to the cave and took a break for a few minutes and then decided to climb to the top. The trail from the cave to the top was a lot harder than it looked and I actually scared myself a bit when I realized I was probably crazy for doing this by myself. But I kept going. I made to the top and it was so much hotter than it was when I first started the climb. I took a break for a few minutes to catch my breath and then started the climb down. When I got to the cave I emptied out my shoes because they were so full of sand and that’s when I realized my cell phone was gone. It fell out at one point when I fell down and I didn’t even realize it. It was about 150′ from where I was so I had to climb all the way back up to get it. I am surprised I even found it because it was almost buried in the sand. I picked it up and dusted it off and headed back down the hill. By the time I reached the bottom I was exhausted.

Our next stop was the Atlas #3 Coal Mine. It was really cool to look at but I wasn’t sure I wanted to climb up the inside of the conveyor tunnel all the way to the inside of the mine itself. We got on our hard hats and headlamps and headed for the tipple house. I am terrified of heights  and this was the one thing Lego had not wanted any part of. We all started walking up single file and I started to get scared because I could feel the boards wiggling under my feet and there were small gaps between the boards where you could see the ground. As I’m sliding my hand along the wooden rails watching every step I take, we come to a spot where I have to step over a hole in the boards that is covered with plexiglass. By this time, I am stuck with my back against the wall, crying my eyes out a barely able to catch my breath I am so terrified. Had it not been for my good friend Epona, and Lego’s teacher Mr. Ontario, talking to me and not really giving me a choice but moving forward I would still be there. Once we got off the conveyor ramp, we passed through a small door way where it got really closed in and dark. We were finally inside the mine and on solid ground. About half way through we stopped and our guide explained that we were about 40′ underground and the panic set in again for me. I was able to keep my composure somewhat and when we finally got out of the mine I was able to catch up with Lego and he said “Hey mom, that was a pretty cool walk. I’m glad I didn’t miss out. Do you think we can go again?” and I said “Nope. Not happening” and he started to laugh at me.

Drummheller 4

We walked down from the top of the mine and the next part of the tour was the tipple house. So this time Epona said to me “If you make it to the top without crying or anything I will take you horse back riding one weekend when we get back.” I reluctantly agreed. I still struggled going up the tipple house but I made it. Epona and I talked quietly for a few minutes and then all of a sudden a pigeon flew right by my head and I screamed making everyone laugh. Then shortly after as we were turning to start walking back down, our tour guide jumped on one of the shakers and made such a loud bang I screamed making everyone laugh again.

Drumheller 2

Once we finished this part of the tour it was time to load the bus and head to the East Coulee School. I was eager to see how Lego was going to handle this part of the trip because he doesn’t understand the whole aspect of  role-playing due to how his brain works.

When they were ready for us at the school, the teacher rang the bell and we all walked in and she said “Boys make one row, girls make another.” and then told the boys to follow her and the girls were to wait till she came back to get us. As the boys started walking I had to catch up to Lego to tell him it was ok and that she was role-playing. It was just pretend. He caught up with the rest of the boys and I got back in line with the girls. Then the teacher came back and told us to follow her to the classroom. We all sat down in the desks and she wrote her name on the blackboard. Her name was Miss Morrison. Next we recited the Lord’s Prayer and sang God Save The Queen. She came around a checked our hands to see how clean they were. One of the chaperons was called a floosie for wearing nail polish. There were little squares on our desk to tell us who we needed to pretend to be when called upon. There was also another square to tell us what we had brought for lunch. For those that had no lunch, they had to go up to the front of the class and they were given cod-liver oil. At one point, another mom and I got into trouble for talking so she drew a circle on each end of the board and we had to go and stand with our noses touching the black board. It was so hard not to burst out laughing. Once I sat down the teacher brought out the strap and snapped it in her hands. As soon as she did, Lego bolted from the classroom. I had to catch him in the hallway and said look it’s just pretend. When out in the hall way Miss Morrison brought out one of the adults and pretended to give her the strap so it was a good way to show Lego that it was pretend. I was able to get him back in the class and seated. Shortly after she finished and asked what was different about going to a school in 1934 compared to going to school now. I told Lego how proud I was of him for coming back in the room even though he was scared. After this we got a tour of the school while they got ready to serve us dinner in their cafe. After dinner the kids made pinwheels and then it was off to the Pentecostal church to bunk down for the night. Lego had a hard time going to sleep that night. I didn’t get to bed till 1am.

The next morning we all woke up at 6am to get packed up and head back to the school for our breakfast. Then I looked around for a bit while the kids did another craft. After we finished it was back to the mine for a short train tour and then we headed to a nearby park to burn off some energy before the long trip home. I talked with Lego about how proud I was of him and how well behaved he had been on this whole trip. The trip home was fairly uneventful. Doing this trip has made me realize that I will definitely head back with Monkey and Bright when it is time for them to go as well.

If you ever get a chance to check out Drumheller, Alberta, take a trip, you won’t regret it. I am hoping we can head back maybe next year sometime.

Meetings and Appointments: Good But Sometimes Frustrating.

It has been a very busy couple of weeks for me and my family. First I had the big meeting Angel along with T, G, and S. We talked for about 45 minutes about how Lego was diagnosed with FASD and Angel took it very well. She wasn’t sure she was going to be able to explain it to Zed without him getting upset but she understood that this fit Lego to a T so to speak. And that was going to be the most important thing. Just before we were ready to wrap up Zed walked in to the office where we were sitting. The tension got very high for the first few minutes so i thought it would be best for me not to say much while S explained everything to him. She did an awesome job explaining things to him and explaining the different things we could do to help him. T also talked to Zed and Angel about Music working with someone from a different program to give him strategies to cope with everything. Before we ended the meeting S told Zed and Angel about the next meeting that would be taking place at the school 2 weeks later and that it would be good for at least one of them to make it for that if they could. I was very happy how this whole meeting went. The biggest stress I had since finding out about Lego’s diagnosis was telling Zed and it was done, so I was relieved.

Just this past week we had the meeting at the school. Lego`s aide Mrs. Fantastic, took time away from her second job to be there. For that I was really grateful. Mrs. K, Angel, G, and S all were there as well. Even the principle made herself available for this meeting. There was a new lady that I met from our school division and she is there to help fight for the funding that our special needs students need from what I understand. During this meeting S explained the findings and made suggestions on things we could all do to help Lego. Some things at home, some things at school and some things we could do collectively. My boy is so lucky to have a team like this that is willing to do anything we can to help him be successful, because to be honest, if I was doing this on my own it probably would not be as easy. S even gave out a list of different tasks that listed who would be in charge for each one so now if any of us have any concern we know who to contact. To me, that`s amazing. Now the only thing I am concerned about is if Lego will get a full time aide next year and if they will keep him with Mrs. Fantastic. We all agreed that since getting the diagnosis, that it`s been easier to engage Lego in daily activities, especially school work. One concern that I did bring up is that Lego really doesn’t have the proper social skills and that it is a struggle for me because when he says inappropriate things I am not sure how to handle it, and usually feel like I lose my temper. I talked with S, G and Angel about this and asked them what we thought we could do at home so S was going to talk with my FSCD (Family Supports for Children with Disabilities) to see if they had an resources we could access. I have hope now that Lego will be able to one day live on his own – still having some supports but be mostly self reliant as long as we can help him move forward with everything. We have a lot of work ahead of us because we got this diagnosis a little later than I think we should have. However, I think the fact that I have fought for 8 years for answers and a complete diagnosis, has given him a better chance because he has a whole team in his corner now. Lego will know that I’m not going to give up on him.

I’m hoping Music will start to know the same with time. You see in all these years of turmoil in our family, among with the pressures of being a pre-teen, my sweet sensitive Music is starting to lose his way. One thing I did tell Zed and Angel about Music at the first meeting is that everything that has happened has had a profound effect on Music. I have fought for 8 years for Lego and Music deserves the same fight. I especially go out of my way to make Music know that he is loved just as much and that he is important too.He has said he has noticed a change in our family since Lego was diagnosed and that most of the yelling has subsided which is really good. Two days ago however, I felt like I failed him.

Lego suffers from stomach pains at least once a month. We think he gets gassy from the medications and sometimes he just needs a warm bath to help his tummy and other times he will get sick from it. Of course on the busiest day I have – I had Lego’s appointment with Dr. Awesome in the morning and had just enough time to get back here for the team meeting for Lego in the afternoon, and Lego wakes up with his tummy pains. Not knowing how long it would last and knowing he probably couldn’t handle a 5 hour trip away from home, I had to call Dr. Awesome’s office and let them know I needed to reschedule Music’s appointment. The office didn’t open till 9 am and Lego’s appointment was scheduled for 10 am. I called right after 9 and explained that I had a sick child and because of this I couldn’t make his appointment. The lady on the other end was not very nice about it, wrote me down as a no-show and said to be expecting a bill for $500.00 for missing it. I apologized and she told me to call back to reschedule. By 10:30 that morning Lego was all better.

Knowing that Music still needed to be seen sooner than later I scheduled an appointment with our local doctor. when we went up I explained to him that I thought Lego needed some anti-depressants to help with his moods. I explained the family history of depression and once I was done he almost was laughing at me saying it was impossible for a child of this age to be depressed and that they wouldn’t do anything for it. I said well why don’t I take the kids out and you can talk to Music for a few minutes. 10 minutes later they called me back in and the doctor said “You are absolutely right. He needs help. But I will not prescribe anything for him. Instead we will refer him to a mental health worker via Tele-Health ( You speak to a doctor over a tv screen and a phone – not something I like). He said they would have an appointment sometime within the next week or so and they would call us. On the way home Music was so upset. He said “I just want to feel better inside, but something always happens and I have to wait.” So I told him I would call Dr. Awesome’s office to reschedule and hopefully they could get him in and it would be better if we could stick with Dr. Awesome anyway because he is already working with Lego and knows all of the family history. Music agreed and said he doesn’t like the idea of talking to someone over a t.v. screen.

I called Dr. Awesome’s office yesterday and was told that because we were a no-show we would not be seen. I explained again what had happened and that I had called but the receptionist said they had no record of that. She said she would talk to the Dr. for me but he most likely wouldn’t reschedule him and that to get an appointment we would have to go through the referral process all over again. And that I would get a bill in the mail if he said no. She said she would call me back. I was in tears by the time I got off the phone. I couldn’t believe how hard I was having to fight for one appointment. After not hearing back by late afternoon I called the office again and asked the receptionist if she had heard anything about rescheduling Music’s appointment. She put me on hold for what seemed like forever and finally when she got back on the line she said Dr. Awesome had agreed to reschedule this one time but that we absolutely had to be there otherwise I would be charged for sure and they wouldn’t see him at all. I thanked her and told her there was no way I would miss it again. So now we wait for the appointment date to get here and I just try to make sure Music knows that he is important too and that I am always here if he needs to talk.