Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Sunday, May 21, 2017

Four years home, and the Argument for Medical Cannabis

The use of medical cannabis is a hot topic in the disability community these days. I mean, what? People are considering giving POT to their kids? How can this even be considered a good thing? Let me tell you...

I think it is safe to say, everyone who knows us knows which of our kids is most challenging. Abel is so severely damaged by his first 10 years in institutional care, and we took a huge leap of faith by agreeing to add him to our family. Every moment in Serbia with him we questioned if we were doing the right thing.  We knew the alternative. Because Abel was basically a wild animal and the institution staff could no longer manage him, in just a matter of days he was being sent to the adult institution in Subotica. (Soo-buh-tee-tsa) It is a bad, horrible place that no animal should ever experience, much less a human being, and certainly not a 10 year old boy.

After several days of twice-daily visits to the institution we were allowed to take Abel back to our apartment in Belgrade for the weekend. As we walked out the front doors, the last thing his caregiver said to us was, "Oh, and he sleeps great!" I turned to Dean. "You know that means he doesn't sleep at all, right?"

We took a child who had slept in the same institution his entire life, had the same food day in and day out for 10 years, and brought him to an upscale apartment owned by my friend. With people who don't speak the language or cook the right foods. We were scared to death. I don't know what we were more afraid of: that he would destroy the apartment or that he would destroy us. With the shortest attention span I have ever seen in a 10 year old child, we tag-teamed until bedtime. Finally, all three of us exhausted, we put him to bed for the night. That caregiver's words came back to us. This is what he did the entire night while our hearts broke, wondering if we were every going to be able to help him.



The following Monday we brought him back the institution as scheduled. Again, we were asked if we wanted to move forward with this adoption. We could not walk away with the knowledge of his imminent transfer on our conscience.  We knew this would be hard. We knew we were taking a risk. We felt we had all the tools available to us to make it work, if it was possible for it to work. We also knew that even if it didn't work, even if he could not function outside of institutional care that he would still be better off in the US than in a place like Subotica.

Abel has made great strides since joining our family four years ago. He is reading sight words, doing some addition and subtraction, building vocabulary at lightning speed, and has more than doubled in size. He turned 14 in April! But to say this has been easy would be a lie. Abel challenges our patience more than any other child in the house. He is a very intense young man. I don't know how to explain the energy that emanates from his every pore. It is electric. Like a static shock when you touch metal, you can feel his energy when he comes near you, and "near you" is an understatement. Abel doesn't  yet understand personal space and the phrase "please back up" is commonly used here.

Abel doesn't play with toys. He has some things that he likes to use for self-stimming behaviors. If he is allowed, he will spend hours of every day spinning a ball on the floor, or dangling a small stuffed animal. (remember his block he had in Serbia?) While it would be really easy to just let him do what he wants all day, we don't. Thankfully he DOES like to have a job. He is our go-to man when we  need something carried heavy up the stairs, like a basket of laundry or groceries. He LOVES to carry the groceries because then he's the first to see what we brought home. ;-) He is still very food obsessed and spends many ours of every day orbiting the kitchen in hopes we will feel sorry for him and give him another snack, even though he may have just had a snack five minutes before.

We have discovered a way to burn some of his energy. Both at home and school, as a reward, Abel earns time on the treadmill. He runs between 3-5 miles on the treadmill every day. Did you catch that? *As a reward*!!! When he's not running on the treadmill he's jumping on the trampoline. He jumps high. He jumps hard. He jumps at a steady pace.

Those activities I've described above are Abel's life. It is no surprise that last year he was diagnosed with severe Autism and PTSD (as were Audrey and Amos) With Abel in the throws of puberty, his energy became even more difficult to manage. His intensity increased. His anxiety, which is through the roof, became worse. He started digging holes in the palm of his hand and digging at the end of his nose. He bit holes in his socks and rubbed his big toe to the point of blood blisters. Thankfully he doesn't really acknowledge the other kids are here so it is very rare there are problems between him and the other kids. Still, he was escalating with Dean and with me, and we didn't know what to do. He has been on a cocktail of anti anxiety and anti-psychotic meds since he came home. Some have been beneficial and others were not.

School was pretty rough too. He has an amazing team of staff at his school but it was all starting to fall apart. Finally he hit a point he was no longer functioning at school. As much as school is our respite from his intensity, it wasn't working for him anymore. We opted to shorten his days and do the majority of his schooling at home.

For the last year we have been researching the use of medical cannabis for kids who have Autism and related behaviors. In Minnesota the use of medical cannabis is approved for children if they meet a specific criteria. Abel has very severe tics (some related to autism, and some we know are related to severe PTSD) which interfere with his ability to function much of the time. Abel tics 5-10 times per minute while awake. The doctor submitted her approval to the State of Minnesota, and we in turn jumped through all the necessary hoops to get Abel started on medical cannabis.

In Minnesota the use of medical cannabis is highly regulated. There are a couple of approved labs, and quality and purity are closely monitored. All of that comes at a high cost. Since insurance does not cover medical cannabis we pay it out of pocket. Because it is state, but not federally mandated, schools cannot administer it. If we fly we cannot take it on the plane. We cannot cross state lines with it. And yet, nobody has a problem if we give him a cocktail of anti-psychotic drugs with an laundry list of side effects. The cannabis has no side effects. None.

This video was from Abel's first day on Medical Cannabis. I wish I had thought to take a video the day before he started. He had NO attention span and there is *no way*  he would have attended to this task, or tolerated the frustration of me correcting him.


Abel has been on medical cannabis for two weeks now. The effects have been dramatic! He still has tics, but they are much less intense, and he's no longer injuring himself. He is no longer obsessing over food and when we're going to eat, and doesn't feel the need to constantly orbit the kitchen. The three hours per day he is at school is now cooperative and and back to fully participating. In fact, if there was more time left in the school year we would put him back to full days. It is clear to us that choosing to try Medical Cannabis for Abel was a good choice.

Four years. Four very interesting years. We sure do love this guy!!





Monday, May 08, 2017

How did this happen?

She's turning 21 soon. Lately I feel like I'm not doing enough. Suddenly "adulthood" is here, and there is so much left to teach. Its not about cutting myself some slack, because I know I have done plenty. Its about realizing there is just still so much! Where do I begin to teach the rest of it? I feel like I've left out so much. What do I teach the next one now so I don't feel the same when he turns 21? Or will I always feel this way, no matter their age? Have I not focused enough one one area or another?


These are the thoughts of a mom, when the house is quiet at 2:30 a.m.

Saturday, May 06, 2017

What causes this to happen?

With the arrival of each new child I have purchased or acquired developmental toys at their level. Although they had never seen toys, much less experienced playing with them, my hope is always to get them interested in toys and attempt to teach appropriate play skills. 

It has never worked. 

I have quite the assortment of toys to teach various skills: a toy kitchen to teach pretend play, shape sorters, puzzles, stacking toys, etc. You name it, I have likely purchased it. 

Yesterday morning I stood in the family room, staring at the shelves full of play things collecting dust. As much as I hate garage sales -well I like going to them, I just don't like the work involved in having one - I decided it's time to have one. I would wait until the weekend and start going through stuff. 

Later in the day I was looking for Angela. I called for her several times with no response. I looked in her usual places. I finally found her, totally engrossed in the toddler toys. Angela was never one to play with toys. She was always so difficult to buy gifts for. Now here she was playing with a toddler car track thingy. At 21 years old.  

What causes this phenomenon to happen? The one where the mom thinks about getting rid of stuff so the kids start playing with it? 

Friday, May 05, 2017

Spinners! All the rage in 2017

These things:

Some people got them for their kids who have sensory processing needs, such as those who have ADHD or are on the Autism spectrum. They are a good thing. Unless....

Unless you are a classroom teacher and suddenly every kid in your classroom has one. Now they're not just a tool, but an annoying toy that has quickly taken over schools across the country. Teachers are throwing up their hands in frustration!
They're showing up in news reports. Some schools boards are banning them and letters are going home to parents.

Is all that truly necessary?

The other night Dean and I were out, and met up with a 4th grade teacher. She happens to have Autism. She also happens to have a couple spinners in her purse. She has done a marvelous job of incorporating them into her classroom.

A friend of mine brought up a good point: Kids don't know limits and boundaries with things like these spinners. I couldn't agree more. It is up to us to teach them what is appropriate at school and what is  not. Does flat out banning them teach the boundaries? Hmmm yes, but I think its a pretty harsh move. It also teaches kids to be sneaky.

What can you, as a teacher, do to use this current fad to your classroom advantage? Here are a few suggestions:

1) Set goals, "When everyone is finished with (insert learning activity) we can have 5 minutes with the spinners." or maybe "if everyone completes X this week, we can have 'Spinner Friday' for the last 30 minutes of class on Friday.
2) Learn from them. Have the class research on how they were developed, why they were developed, how they are made, etc.
3) Use them for math activities. Graph the colors of spinners kids in your classroom have. For older kids, research the money involved, "How much money is the investor earning?" and I'm sure there are lots of other math activities that could be done.
4) Make it a class-wide fine motor activity, "On the last Monday of school we'll have a spinner olympics! Start learning your tricks now!"

What else could teachers do to incorporate the spinner craze into their classroom activities? Please post in the comments.