April’s Autism Awareness: Alex’s Brutal Honesty

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One more today for April’s Autism Awareness. Today Andrea will be sharing with us about Alex’s Brutal Honesty…

Autism Awareness Month: Alex’s Brutal Honesty

alex honest

If you know a person with Autism or Asperger’s Syndrome, then you most likely know that they are often very honest, brutally honest. They often are only interested in telling the truth in a situation no matter how it affects people’s feelings. I am not trying to lump everyone with Autism into this category, but Alex definitely fits in with those who are like this. 

In the past, Alex will typically tell me the truth about anything I ask him. If I ask him if he spilled something on the floor or messed something up, he will answer, “yes” (if he did it). If he didn’t do it, he will throw Annika or Lincoln under the bus in a heartbeat. However, there have been times lately where he does lie to us.

For example, Alex does a lot of oral stimming (I will discuss this in another post).

He likes to chew on zippers a lot, and you will often find him chewing on his jacket – he seems to like to do this on the bus. He will get off the bus, and half of his jacket will be soaking wet. We get up to the house, and I will ask him if he chewed on his jacket. He will typically answer, “No”. I then make him look me in the eye, and I ask him again, and he will then tell the truth. So, I guess he is starting to learn things from his brother and sister .

alex honest 2

 

I have to admit that we do sometimes get excited when he does tell a small lie – I guess it makes us feel like he is doing something that “typical” children often do.

Alex is typically very honest with his answers to questions and things he tells you. At times, I have to admit that his brutal honesty has been embarrassing. Alex loves to be the person to push the buttons when we get in elevators. When we are at the hospital, the elevators are typically busy, and there are often people in them when we get in. I try to explain to Alex that he can’t push around people to get to the buttons (he doesn’t understand a person’s personal space or social etiquette). He will look at the people and scream, “I DON’T LIKE PEOPLE!!! Why do they have to be in here and push the buttons?”. Thank goodness a lot of times people can’t understand what he is saying because he is yelling so fast and loud .

There have also been a couple of times in church where we tell him it is time to go in front of the church for Children’s Church, and he slams down his iPad, screams “I don’t like church! Why do we have to come to church?” as he walks up the aisle and hits the back of seats when he comes to them.

Yes, we sometimes want to crawl into a hole 

I have also learned that Alex can tell when people honestly care about him and really want to be his true friend. But, I will talk more about this in a later post.

alex honest 1

 

To be continued…..

April’s Autism Awareness (Alex’s Obsessions)

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We are still in the midst of April’s Autism Awareness. Today Andrea’s shares about Alex’s obsessions…

Autism Awareness Month: Alex’s Obsessions

If you know a child with Autism, you have probably noticed that they often get fixated on certain items. To kids with autism, these objects are familiar and predictable. They often help them in dealing with anxiety or get them calm in an environment that is uncomfortable to them.

Alex has had several different fixations/obsessions over the years. At one point, he was obsessed with salt shakers. When I would leave the room to change Annika’s diaper or something, he would scoot a chair over to the cabinet. He would then crawl on top of the countertop, grab for the shaker, and pour as much as he could out before I got to him. “Salt” would be the first thing he said when he came downstairs in the morning.

Alex also went through a stage where he was obsessed with balls. It didn’t matter what kind of ball, what shape, etc. He just loved balls. I can’t tell you how many balls we owned. He would sleep with them all over his bed. 

Then, his next obsession was lawn mowers. He would sit and talk to them and play with them for hours. He would go back and forth in the yard mowing with them. We always joked that he would be a landscaper when he grew up.

Alex Obsess

 

I think we counted we had around 16 or so between our house and my parents’ house. He still likes them, but we have been able to get rid of most of them. When he was in the hospital for his cancer treatments, he would have to sleep with one most nights!

Alex Obsess 2

The latest obsession which has lasted quite a while is balloons and inflatables. He really became obsessed with balloons while he was in the hospital. This may have been his way of coping with all of his treatments – I am not sure.

Alex Obsess 1

 

I just know that no matter what his little body was going through, a balloon made him very happy, and he would sleep with it and talk to it. He loves inflatables which range from bounce houses to pool rings and floats.

Alex Obsess 3

I can’t even begin to think of how many beach balls, swim rings, inflatable seahorses, etc. that we own. When he isn’t blowing one up, he is looking them up on his iPad and doing screen shots of them. He knows the manufacturer and model of each ring, float, etc.

Alex Obsess 4
For a while, we struggled thinking we should move him away from these little obsessions, but we realize they are his calming mechanism. I think his surroundings often over stimulate him or confuse him, and this is his comfort. So, we go along with it.

If you see us at the ball field, you will most likely see Alex with one of his inflatables. I apologize if you get knocked over by it or hit in the head . We get odd looks when we go places with these things, but so be it. When I asked Alex what he wants for his birthday this month, he listed various inflatables. It makes him happy, and in the end, that is what we want for all of our kids.

 

April’s Autism Awareness (the marriage)

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In today’s Autism Awareness post through the life Alex Kallas, his mother, Andrea, shares with us the effects of autism on a marriage…

Day 11 of Autism Awareness Month: How it Affects a Marriage

I apologize that I missed a few days. The flu bug decided to take me and Alex down, and I finally feel like sitting at the computer and typing for a few minutes. Today I am focusing on how Autism affects a marriage. When Alex was diagnosed, Erik and I were told that 80% of couples that have a child with Autism divorce. EIGHTY PERCENT!!! That was very scary. First, your child gets this diagnosis that breaks your heart and then you hear that most couples don’t come out of it together.

As I look back over the last 6 years since Alex was diagnosed with Autism, I can see where the divorce rate could be higher. Autism is financially and emotionally draining, and that just adds to the strains that are typically put on a marriage. When you add how differently men and women typically handle situations, it is tough!

I am a very emotional person. I cry when I am hurt and when I hurt for others. There have been times that I have laid on the bathroom floor in the fetal position crying and crying about how I want things to be “normal”. Erik doesn’t understand those moments. He is more analytical and realistic. His thoughts are we have been dealt this hand and we need to accept it and move on. Needless to say, we have had some issues over the past few years. And that statistic seemed to always pop into my head. I decided a long time ago that we were not going to allow that statistic to take place in our family – I think we both did.

When you have a child with Autism, there is often one parent who is more involved in overseeing the diet, therapy, etc. I am that person in our family. And to be honest, I wouldn’t have it any other way. However, when you are that person and you deal with Autism every minute of the day, you can have some resentment build up towards the other spouse. And yes, that happened with us. I remember when Annika was just four or so months old, I was at my breaking point. I had a four month old, a 19 month old, and a four year old who required an enormous amount of my time. I had been getting little sleep, and I was overwhelmed.

I was tired – tired of spending hours doing therapy with Alex and researching diets and other treatments, tired of trying to be a good mom to Lincoln and my new baby girl, Annika, when I wasn’t giving them near enough attention, tired of acting like we were the perfect family, and tired of fighting with Erik. At that point, I think we were both afraid that we were going to be in the majority. We were letting Autism and our “life” come between us – we weren’t taking the time that we needed for our relationship.

It was at this time that we got involved with some couples at Thompson Station Baptist Church. I believe these couples were sent to us to help save our marriage. We started the study “Fireproof Your Marriage”, and we were given contact information to a Christian marriage counselor in the area. I am not going to say it was easy – the counselor told us at one point that we are wasting our money if we didn’t start working on our marriage. He was right. Something finally clicked, and we decided we didn’t want to be in the majority. We fought to get back our relationship and to start being a team again.

Has it been easy? No. Life isn’t easy, and we are often thrown curve balls. I am sure some people would ask why I would share the fact that we have had problems in our marriage. I do it because if we can help one couple decide it is worth it to fight for their marriage, then it is worth sharing. Autism isn’t easy. Marriage isn’t easy. But if you are willing to put God first and work through the tough times, you will come out on the other end much stronger. I am thankful for the couples that were brought into our lives when we needed them the most. They and our counselor allowed us to get back to a firm foundation. We had NO idea what laid ahead of us that next year. That is when we heard Alex had cancer, and I won’t even go into the statistics regarding the marriage when dealing with a child with cancer.

To be continued…

Autism awareness 11

April’s Autism Awareness Day 6 and 7

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Continuing with the focus on autism awareness through the story of Alex Kallas…

Day 6 & 7 of Autism Awareness Month:

I am playing catch up today because we have had a crazy weekend and some sickness at our house. Before Alex got his official Autism diagnosis, I had not only started researching different diet options, but I also started looking for different therapy options.

We chose Applied Behavioral Analysis as the route we would go with Alex’s therapy. This type of therapy is designed to help with the child’s social skills, communication, academic, reading, fine motor, dressing, eating, potty training, etc. There was only one problem when we decided to go this popular route – COST!! 

The number of hours recommended for ABA therapy each week was between 20-40 hours. At the time, insurance didn’t cover any of the therapy. To do a comprehensive program where therapists would be provided, the cost would range from $1000-2000 per week (and sometimes more). Needless to say, we didn’t have that kind of money, so that wasn’t an option. However, I was very lucky because I was able to talk to the wonderful lady who wrote one of the books I read about Autism, and she lived in Middle Tennessee. We were able to hire her for for around $4,500 for a year, and she would develop “programs” for me to do with Alex, and she trained me so that I could do the therapy with him. Erik and my parents also took time to do therapy sessions.

I learned over time that some people don’t like this type of therapy because they compare it to training a dog. You use a lot of repetition along with positive and negative reinforcements. But, the fact is our children on the spectrum do learn through repetition. Our consultant would set up programs for “Attending”, and then there would be trials such as “look at me” and “wait”. I would use that throughout the session. Then, there would be a “Imitation” program where the trials would consist of waving with a certain hand, clap hands 3 times, build the same figure out of blocks, etc. We would have a “matching” program where a trial would be “put with same”, and he would match Verb flash cards, Emotion cards, etc. And the list goes on and on. For each “trial” within each program, we would do it 10 times. I would have worksheets to fill out for each trial. Then, our consultant would come weekly to observe and see how we were doing.

Alex responded very well to this type of therapy. I will not say it was easy. It wasn’t. The actual therapy isn’t really that difficult, but it is just the time that it takes. I had a 6 month old, and I sat him in the room with us while I would work with Alex. Then, at what I thought was the most difficult time in our lives, I found out I was pregnant with Annika at the same time Alex was officially diagnosed. I quickly learned that God truly does work in mysterious ways. After all of our trouble conceiving before we adopted Alex, he gave us two back to back surprises. I always thought he was probably looking down on us and having a good old laugh!!!

To be continued….

~ Andrea Kallas

Alex Autism

 

I have to smile at Andrea’s last paragraph. I know several families that could never conceive a child and so they decided to go through adoption… and then after the adoption they became pregnant!

I have no doubt that God knew Alex was to become Erik and Andrea’s and if they had of conceived Lincoln and Annika first… they would have never even considered adoption… and where would Alex be?   

For I know the plans that I have for you,’ declares the Lord, ‘plans for welfare and not for calamity to give you a future and a hope.

Jeremiah 29:11

April’s Autism Awareness Day 5

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We continue Alex’s story…

Day 5 of Autism Awareness Month:

Autism Day 5

 

When I realized Alex had Autism, I dove into researching everything I could find about it. I was very angry and sad, but I used those emotions to fuel me as I read all of the books I could find and searched on the internet.

I think most parents would be willing to do ANYTHING within their power to pull their child out of the grips of this Autism monster. That is what we do. That is our job. The problem with Autism is treatment is extremely expensive – out of reach of most of us that don’t have the amount of money someone like Jenny McCarthy has.

Before I looked into different types of therapy, I decided to start with a least costly option first – Alex’s diet. In September 2007 (one month after we figured out what was going on), I started Alex on a Gluten Free Casein Free diet. If you are like me, you might not know what Casein is. It is proteins that are found in milk. I admit that I was overwhelmed at first when we changed to this diet. I didn’t realize how wheat and dairy are in so many things!!

This diet made a HUGE difference in Alex! It doesn’t affect all kids with Autism the same way, but Alex is one of those kids that truly benefits from this diet. Before going on the GFCF diet, Alex was drinking close to a gallon of milk every two days – he was constantly asking for milk. He also ate a LOT of yogurt. He was getting terribly constipated, and when we put him on this diet, it got much better.

The amazing thing about this diet was the effects it was having on his mood and his speech. Before going on it, he only spoke one or maybe two words together. Within 2-3 weeks of going on this diet, he started putting more words together. We learned that milk often has the same effect as heroin with Autistic kids. They crave it, and it creates this fog in their brains. The changes we saw were amazing!!!

I have to admit that we haven’t been the best about sticking to this diet since Alex’s cancer diagnosis. When he was in treatment, we just wanted him to eat something to keep a little weight on, so we did get off of the strict diet. But, we are working our way back to it because we know how well he responds to it. I know it is overwhelming to a parent as you start thinking of doing this diet, but I would encourage you to try it. You never know how it will effect your child!

~ Andrea Kallas

April’s Autism Awareness Day 4

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Today is the post that I read that led me to ask Andrea for permission to share Alex’s story here at Proven Path Ministries. If you follow this blog ministry you probably have realized I don’t have much of a “theme” here other than wanting to help people understand that no matter where you are in life… no matter how lost… no matter how hurt… no matter how confused… no matter age, gender, religious background, ethnicity, etc. The proven path is found on the one that is lit by the Light of the Word. There is hope in Him and a purpose for all things… we don’t have to understand the why to trust the WHO.

Now for Day 4…

Austim Day 4

 

Day 4 of Autism Awareness Month: A Parent’s Heartbreak

As I said on Day 3, Erik and I had figured out that Alex had Autism after seeing Jenny McCarthy on Oprah and after reading some related books. We made an appointment at Vanderbilt so we could get the official diagnosis. It was on October 29th, 2007. Alex was 3 1/2 years old.

I knew he had Autism, and I knew this was just going through the process so he could qualify for services in school, but when I heard the psychologist say, “Alex has Autism and Developmental Delay”, my heart was broken. We, as parents, have these dreams for our children – I think we always come up with the perfect scenario in our heads. I wanted my kids to first and foremost be healthy (poor Alex has had multiple blows in this department). I wanted them to do well in school, have lots of friends, play sports, go to college, meet that perfect mate (at about 30 years old), and live happily ever after and give me grandkids that I can enjoy while I am still senile (since we started a family so late – I was 34 when we adopted Alex).

When I heard those words, I felt like the dreams I had for Alex were shattered. I didn’t want him to be picked on by other kids because he was different. I didn’t want him to get frustrated because he didn’t understand society and because they didn’t understand him. I wanted to hear my son come up to me without me saying it first and tell me he loves me! I wanted him to desire cuddling with his mom – not push me away because he doesn’t have that desire and he doesn’t want me in his personal space. I wanted him to wave at me when he went to school or my parents’ house. I wanted him to actually miss me when he wasn’t around me!

So, yes, I was heartbroken. I still get sad and have bad days, but then I look at Alex and think, “life must be awesome through his eyes because he is always happy and things seem simple”. I often wonder what is going on inside his mind, but I will probably never really know. The “perfect” dreams I had in my head were shattered, but I realized life isn’t perfect. Life is what we make out of the situations (good or bad) that are thrown at us. I got out of the self-pity mode I was in and began researching diets, therapies, and anything else I could start doing to give Alex as great of a life as I could. To be continued…

April’s Autism Awareness Day 2/3

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We continue Alex’s story…

Austism Day 2

 

This is one day late – Day 3 of Autism Awareness Month:

On my previous post, I talked about some of the behaviors that we started noticing in Alex after Lincoln was born. I am sure a lot of you will think that I was naive to not know anything about Autism or consider it a possibility, but I didn’t. I was concentrating on the Fetal Alcohol Syndrome and what delays and issues we would be facing with it. I was researching about attachment disorders (common in Russian adoptions). And I was buying every children’s book I could find about adoption so we would know how to explain the adoption to Alex and how I would answer his questions as he got a little older. 

As the next 3 months went on, I knew something was going on with Alex. I would encourage mothers to always follow that “motherly instinct” – it has proved me right several critical times. However, all I would get from the pediatrician was “Alex is a special case”. And yes, he was a special case. When we adopted him at 13 months old, he only weighed 13 pounds. He couldn’t even sit up. He had spent 13 months alone in a crib and was rarely held.

It wasn’t until I was painting our home office one day and Erik came home early from work that we discovered exactly what Alex had. Jenny McCarthy was on Oprah, and she was talking about her son and his symptoms, and it was like she was describing everything about our sweet Alex. Erik and I looked at each other, and we knew. I immediately walked out of the house to go buy her book. I also went to search in our basement for a book that a friend’s mom had given us after we adopted Alex – “In the Eye of the Hurricane” by Juli C Liske (I had never read it). I poured through them, and I soon realized that Alex did indeed have Autism. Now it was time to get ready for that very long road ahead of us…

Autism Day 3

April’s Autism Awareness Day 1

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April is Autism Awareness Month. In honor of this month I am going to begin sharing the post of a family that lives in my community. I am a few days behind so I am just going to get straight to it. I will keep these post in a special category on my website. You will be able to find them and share them any time under the Autism Awareness category link.

This is the story of Alex Kallas… his parents are Andrea and Erik Kallas. His story is being told through the eyes and heart of his mother.

Austism Day 1

Today is Day #1 of Autism Awareness month, and I will be sharing various pictures/thoughts/facts throughout the month because honestly, Autism is a growing epidemic in our country! Today I am sharing a picture of our sweet Alex – this is when we noticed a HUGE change in Alex – he was 3 years old and Lincoln had just been born. 

This is a picture that a photographer took of him a couple of weeks after we started noticing the change in our sweet boy. A week after he had his first MMR shot along with a few others, Alex stopped making eye contact and was acting very different. Before that time, he had delays due to his Fetal AlcoholSyndrome and being in an orphanage for 13 months, but he was always happy and loved posing for the camera.

This was the only picture our photographer could get of Alex that day, and this photographer had done multiple photo shoots for us with Alex. His expression just looked blank, and he was no longer our happy boy. Alex officially got diagnosed with Autism in October 2007 at 3 1/2 years old, and that is when our first battle began – the battle to reach inside our precious son and help him learn to communicate with us.

More to come later….

 

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