Month: December 2018

Our son, Kai, is 6 years old and special needs. When he was about two years old we very briefly put him into a daycare where I worked. Kai is nonverbal, Autistic and has PVL (periventricular leukomalacia), SPD, Duplicate Chromosome 16 and more. At this time he was beginning to slap himself in the head. At the daycare, Kai was assaulted.

There was a boy who was about four years old that had lots of anger issues. He approached Kai and spoke to him. Kai, of course, didn’t respond. The boy became angry that Kai was ignoring him and he choked him. This happened TWICE in two days.

Right after this, I left the daycare (which was only temporary for me, anyway) and withdrew Kai. The daycare did not handle the situation well at all but that is another story for another time. Unfortunately, this experience had Kai switching from head slapping to throat punching, which he had never done before.

It is four years later and Kai continues to throat punch and, occasionally, slap his head. If you don’t know that it’s coming, when he punches himself in the throat it can be very alarming. It is quick and sometimes hard. He is not hurting himself internally (we had an ear, nose and throat doctor check) but he sometimes has a bruise at the center of his throat. He never tries to throat punch or head slap someone else.

So, why is this happening?

There are many reasons why this could be happening. These include sensory processing (under or over stimulation in the brain), pain in the ear or mouth, attention seeking, frustration and more. Take a look at this excellent article for more information:

https://www.autismparentingmagazine.com/a-head-banging-solution/

The article offers several solutions to attempt to stop head banging, and for us, throat punching, which is a similar event. One of the solutions that has been having a positive effect lately is using vibration.

Kai is not seeking attention when he head slaps or throat punches (your child might be, it is different for everyone). He has been checked and is not having ear or mouth pain. He occasionally will do it when frustrated but not often. It appears that in Kai’s case, he needs more, or different, sensory input.

We have tried tapping up and down his arms but this seems to encourage the behavior. A therapist demonstrated doing joint compression as a possible solution, but, again, no effect, or it made it worse. But recently we discovered that Kai responds well to using a vibrating back massager. When he is head slapping, throat punching, upset, or appears to be about to go into a meltdown, we calmly turn on the massager and hold it out so he can touch it with his hand. This calms him almost instantly. We then use it on the top of his head, his forehead and up and down his arms and shoulders. So far, it seems to give him what he needs.

To be clear, we are not worried about what other people think when Kai is stimming in this way. We are more concerned about him getting injured over time. Kai is growing and getting stronger. By distracting him from this behavior and still giving him the input that he needs, we can reduce the possibility of injury. Win-win.

What strategies do you use with your special needs child to distract from self harm? Please discuss in the comments below.

As the New Year approaches, I am beginning to reflect on how the past year went and to start to create goals for the coming year. These are my ten resolutions as a special needs caregiver.

1. I will make a special needs trust.
   This is a top priority and one that I have already started to read up on. I would like to think that I can live forever and take care of my son, but I know it’s not going to happen that way. Even if money is tight, by establishing a trust using a qualified expert in this field, I am taking steps to protect his future. By the way, I am a big do-it-yourself person but not when it comes to this. This needs to be airtight. I’ll skimp on other things to make this happen.
2. I will make a will.
   Hand in hand with the special needs trust, I will also make a will. I am not leaving it to chance if something happens to my husband and me. I want all of our assets to go where they should go to take care of those I love the most.
3. I will appoint a guardian and have the paperwork notarized.
   Who will take care of my kids, and, long term, my son when my husband and I are gone? I’m locking it in now. I can always change it later.

4.  I will speak up when things don’t seem right at school.
I have already kickstarted this one but I am going to continue into the new year. I plan to be alert and proactive. If I don’t speak up for my son, no one else will.

5.  I will not underestimate my son.
Sometimes I predict how my son will react to a situation and I am utterly wrong. I think that maybe he won’t like something or a situation will cause a meltdown. This can make me restrict experiences for him unnecessarily. I am going to assume that HE CAN.

6.  I will remember to reintroduce experiences that were formerly rejected.
Just because my son has rejected pizza countless times doesn’t mean that next time he won’t try it. Persistence beats resistance, as my husband likes to say.

7.  I won’t be so hard on myself.
I am going to make mistakes. I am going to be tired sometimes. Such as life. I plan to acknowledge, forgive myself and move on in the coming year.

8.  I will think of and introduce new experiences on a regular basis.
I am going to dare. We are going to try new things. If I fail, I will have successfully figured out something that doesn’t work. And then, I’m moving on to the next new experience.

9.  When I realize that I have dropped the ball, I am just going to pick it back up again.
There have been and will be times where I am not giving special needs parenting my full attention. Times when I realize that am being less consistent than I wanted to be with oils and vitamins and home lessons and tablet time and everything else. Instead of beating myself up about it, when I notice that I have dropped the ball, I am just going to pick it back up again. I know that I can do anything in life but I can’t do everything, not all at the same time. Its OK.

10.  I am going to remember how blessed I am. That my life is full of abundance.
I remember when I dreamed of having what I have now. I didn’t envision it quite this way. In a lot of ways, what makes it different makes it better. I am so thankful.

What resolutions will you put into place for the coming year as a special needs caregiver? Please share in the comments below.

My son, Kai, is 6 years old and has special needs. He is developmentally about 2 years old. In addition to all of the challenges that he faces in all developmental areas, Kai has become uncooperative when work of almost any kind is presented. He fusses, squirms, cries, turns sideways in his seat. He just wants to be on his tablet, all the time. While he is learning, reviewing and enjoying when using the tablet, he also needs to be doing work with hands on, concrete manipulatives. For those confused, concrete means something that you can touch and manipulatives are simply things that you can move about and work with using your hands.

Last year, several things happened at once that threw me off course when I worked with Kai at home. My husband became very ill, we were spending lots of time in the hospital and we didn’t have anyone locally to help us. Essentially, everything that I was doing at home with Kai stopped. My husband was so sick that he couldn’t get up off of the couch for several months and trips to the bathroom were a challenge. Thankfully, he is on a slow road to recovery now but it was a very scary time. We also ended up moving to the country, where we were closer to family who could help more.

This past summer, I was in recovery mode. It had been a hard twelve months, we finally had gotten settled in our new house and I needed to relax. So, Kai’s home activities continued to be put aside. I feel guilty. I feel like it was a disservice to him. But I just… couldn’t.

Now that my husband is more or less functioning, we have started working with Kai at home again. We are having the same rebellion he is showing at school. We have met with the school and put several changes into place to help get him back to being able to focus on his work. My husband recalled that lessons always go better when we love on him and play with him first. So today, we sat Kai at the table and did just that. He started fussing immediately when we sat down, presumably to work, but when we just loved on him and sang to him and used the vibrating back massager on his head and arms, he relaxed and enjoyed it. We did not attempt work. We are first trying to build good associations with the work area before we reintroduce that.

One of the hardest things for Kai is writing. He is not interested in it at all and hates doing hand over hand (assisted) writing with any kind of tool you could possibly think of from crayons to pencils to markers – hates it. But there is one place where Kai WILL do writing, hand over hand, with joy and enthusiasm. No struggle at all. That place is the bathtub.

Kai LOVES to use bathtub crayons and write on the side of the tub. I usually hold out two colors and say, “What color do you want?” And he’ll reach for the one he wants. Sometimes, in the past, I have asked him what color he wants without showing him any choices. He has said red, blue and a mangled version of the word yellow. Not consistently. But when he does that it is really exciting.

After he chooses, I put my hand over his and put his fingers in a tripod grasp (this is the way they taught you to hold a pencil in school). The hardest part for Kai is connecting the tip of the crayon to the side of the tub, so my hand keeps it there for him. Then we write his name on the side of the tub as I say out loud, “K… a… i… Kai. That’s you! That’s your name!” He gets all excited and smiles and wiggles around. We do it five times. Then I offer two new colors, he chooses and we do more. Each new thing gets a new color. We draw circles, left to right lines, up and down lines and triangles. Sometimes the shapes vary. Then at the end I give him a huge round of applause. We get a washcloth, wet it and I sing the Barney clean up song (clean up, clean up, everybody everywhere, clean up, clean up, everybody do your share) while Kai wipes away everything he just did. Sometimes I hold my hand on top of his. Sometimes he can do it himself. And that is Kai’s writing lesson.

The only place Kai will do this is in the bathtub, during a real bath.

You may be wondering how I figured out that this would work. It was a huge, long process. I figured it out by learning what DIDN’T work. What didn’t work was crayons, markers, colored pencils, regular pencils, pens, paintbrushes, chalk, colored paper, lined paper, drawing in a salt tray with a chopstick, forming letters with playdough, stamping, tracing with writing utencils, tracing with fingers, and probably a dozen more things that I can no longer remember trying. There wasn’t a whole lot left to try when I stumbled across bathtub crayons. Go figure.

There is something about the water. If your child loves water, they like any activity you do in the water better. If they hate water, forget it. This one’s not for your kid.

For now and the foreseeable future, we are back to writing during the bath. We will attempt the other methods we tried again as Kai is able to regulate himself more and as we work through this period where he is work averse. Even though it feels like he may never do his work again, I know this is a phase that we will get through and push past.

When something doesn’t work, don’t be afraid to try something else. You may not get the result you want on the first try, or, like me, on the 20th try. But you WILL find something that works if you keep trying. Be creative. Think outside the box. (In fact, you can lose the box, this gig is all about losing the box). You can do this.

In what ways have you been creative to solve a problem with your special needs child? Please share in the comments below.

To say that Texas is like its own country is not an overstatement. One of the things I really had to adjust to as a new Texan, having been raised in New York and having lived in Los Angeles and Las Vegas, is that Texas moves along in time at its own pace. And, sometimes, depending on the topic or cultural perspective, they are about 20 or more years behind.

For example, when I first became a teacher in Texas, I noticed that yes, the staff was multicultural, but they seated themselves in a segregated manner at staff meetings. The black folk sat with the black folk. The hispanic folk formed their own group. The white folks tended to be in their own space as well. There were no Asian folk at all. Having grown up as a minority that passes for white in a black neighborhood, this was WAY outside my comfort zone.

In New York, just from a practical standpoint, there is not enough space to do this. In a city of more than 8 million people on an island that is 13 miles by 2 miles, people get used to mixing. That’s not to say that it is always peaceful, but, mostly, it is.

We moved last year from Fort Worth to a tiny town in East Texas. In some ways, it was like moving even further back in time. The town is quaint, the folks know each other. There is a Main Street of businesses. The other day I went to the Wal-Mart in town and saw a couple decked out from head to toe in camo, and it was not just a fashion statement. They were getting ready to go hunting. Behind them, about 20 feet back, I saw a guy in a huge cowboy hat, Wrangler jeans and boots. This is every day life here. It is wildly different from New York.

It took a long time to get used to Texas.

What stands out to me, incredibly, is that there is one area in which my tiny town in East Texas exceeds my experiences. This is in the area of special needs acceptance. They not only exceed any other place that I have lived, they blow those places out of the water.

My son, who is special needs, goes to a completely special needs dedicated campus. While many students need and have inclusion in the general education setting, my son is low functioning and this is not and never will be appropriate for him. The campus does a stellar job, loves all of their special needs students and they are team players. 

My neurotypical eight year-old daughter goes to regular public school. She is in her second year in a row sharing her class with an autistic kid. The school has created such an accepting and warm environment that it is a normal occurrence all day long to hear students from different grades greeting this child in the halls. His classmates accept him totally. Any behavior that might be deemed “strange,” is merely accepted as his normal. These children are 7-10 years old. And THIS IS THEIR NORMAL.

This same daughter is in a karate class in East Texas. This class accommodates students with a wide variety of special needs. My son does not attend because I don’t believe that he is developmentally ready but he could and might in the future. I recently participated in a Facebook discussion created by the sensei (teacher). He asked, “If you were to have a tournament and include a special needs division, what are some names that we could call that division?” No fewer than FIFTY people participated in the discussion! And, although there were some who obviously “didn’t get it,” when it came to being sensitive to what to call the division, everyone seemed to see the importance of having that division and honoring it.

Think back to the 1900’s (not so long ago). Special needs children were often institutionalized. They didn’t go to school. They were called names like “retard.” They were fringe people. They were picked on. And much, much worse. Take a look at this link for more information on the horrible treament that we have hopefully left behind for good:

You can say whatever you want about the current political climate. About the changes in our country in the last couple of years. But I will say this with absolute certainty. WHEN A KARATE DOJO IN RURAL AMERICA HAS A SPECIAL NEEDS DIVISION AND WANTS TO GIVE IT A SPECIAL NAME TO HONOR SPECIAL NEEDS FOLKS, OUR SOCIETY HAS ACHIEVED GREATNESS. At least, in this area.

I am comforted. For my son, and all our amazing special needs angels. This is the greatest time in history for them to be alive.