In So Many Words

This month’s topic is on helping special needs kids to calm down and/or refocus after a meltdown or stressful event and asks, “What works for your child?”

For this question, I thought I would go straight to the source. I interviewed Michael until he said it was too boring to talk about anymore and got a few ideas of what he finds the most helpful. So here goes:

• A hug or a squeeze – “nice and tight” is best.
• Snuggling on the couch or his bed. (I sometimes turn his music on as well, but he said that is for bedtime, not for calming down.)
• Tickling or doing something funny to make him laugh. He said this makes him happy, which helps him calm down.
• Having Mommy explain what is going on so he won’t be confused. (Many times his meltdowns are triggered by misunderstandings or not stopping to realize that something can easily be fixed.)

He also said the first step is to stop him when he is whining. And he’s right, it’s so much easier to head off a meltdown than to actually recover from one.

Note: This post was written for the S-O-S Best of the Best, Edition 10: Calming Techniques for Stress and the Special Needs Child, which will be published on September 15th.

I apologize for the short post this month. We got a ton of rain after the hurricane went through and ended up with almost two feet of water in our basement. We have spent several days sorting and tossing stuff, as well as doing a major cleaning.

As I was catching up on some blog reading today, I came across a book review over at Whitterer on Autism that I was very excited to see.

The review was of a book called From Anxiety to Meltdown by Deborah Lipsky, and the reason I was so excited is that I saw Deborah speak last year at the National Autism Conference in State College, PA.

Deborah is a woman who was diagnosed with high-functioning autism as an adult and has added author, comedian and public speaker to her extensive list of accomplishments and roles in life. The talk is about an hour and is well worth the listen. She is extremely well-spoken and very funny, plus I think you will learn a lot from what she has to share about her experiences.

Here is the link to the archived webcast:

http://streams.wpsu.psu.edu/103-Closing_Keynote08062.html

(When I watched it again earlier, the sound didn’t always quite match up with the picture, but that may just have been my internet connection as it cleared up a few minutes in.)

Just in case the link doesn’t work, it came from the list of webcasted programs from the 2010 conference at http://www.outreach.psu.edu/programs/autism/webcasting.htm. Deborah was the closing keynote speaker, so her presentation is listed at the very bottom of the page.

Enjoy!

As I sometimes do on Sundays, I would like to share a few links that I have run across recently which may provide some benefit to others (perhaps informational, thought-provoking or just plain fun).

Oh, you want to know who won the giveaway? All in good time, my friends, all in good time.

Okay, okay, I’ll wait here while you scroll down and see if it was you. Just make sure you scroll back up because there’s some really good stuff here in these links that you won’t want to miss.

The Links

Informational:
Walking the Autism Road with Someone You Love by Christine Hoover – a short article with highly practical suggestions for anyone who wants to be a friend to a family dealing with a diagnosis of autism or another disability. This was helpful to me to more easily articulate an answer to friends who ask me how they can help.

Preventing Meltdowns: Outsmarting the Explosive Behavior of Individuals with Asperger Syndrome by Judy Endow – very nice discussion of both the stages of explosive behavior and several solid strategies for preventing meltdowns before they start

Thought-Provoking:
Vaccines: Are you REALLY “Green”? at 1-2-3 Autism Free – interesting post about how many people who are concerned with going green and/or organic also choose to vaccinate their children, given the ingredients in said vaccines. I have to admit I’m on the other side of the problem, easily choosing not to vaccinate but having a harder time being truly green and organic in my household products and practices.

And, Finally, Just Plain Fun…
Top 10 Hazards of Being a Mom Blogger by Ellen at Love That Max – Number 1 is “Being called a ‘Mom Blogger.’” Enough said – now go and read the rest!

The Giveaway Winner

As promised on my Cowboy & Wills review, I am also announcing the winner of the free copy of the book. I listed out and numbered all of the entries from the top down, with Mrskroberts being number 1 and Shenkfam being number 13. I then ran a random number generator at Random.org, and this is the result:

The winner is number 2, Elizabeth Channel. Congratulations, Elizabeth! I’ve sent you an email asking for your mailing address, and the book will be sent directly from the publisher once I have that information.

And thank you again to Monica Holloway for sharing her son’s story with us!

So, I’m heading out today to State College for the National Autism Conference. I’m hoping to learn a lot, although I’m still recovering from an allergy attack I had on Thursday night that sent me to the ER. It was the first time I’d ever broken out in hives, and we don’t know exactly what caused it, so I am pretty stressed out about what to eat right now!

I had this list of things to do before I left that started at 25 items and is only down to 20 right now, but I’m going to try not to stress out over anything – it will all still be here when I get back.

Anyway, the reason I am posting this is to share an strange yet fascinating conversation we had with Michael on Friday night. Bob stayed a little late at work to clean some things up since he is taking the week off as well, and when he got home, this is what transpired:

Bob: Hurray! Vacation has begun!

Michael: Don’t you even care about your wife?

Bob & Trish: Huh?

Michael: Don’t you even care that she is going to be away for the whole week?

Bob: Yes, I will miss her, but she really wants to go to this conference.

Michael: She does?!? Why?

Bob: Because she is going to learning more about autism.

Michael: (brightening up) Oh, so she can help me? (pausing, then seeming downcast again) But I don’t want to have to think like everyone else. You both just want me to think like everybody else does.

Trish: We don’t want you to think like everyone else. We want you to think whatever you want and tell us anything.

Bob: We want you to be your own person; we love the way you think.

Trish: We just want you to be able to talk about things without yelling and falling apart.

Michael: (brightening again) Oh, so it’s the meltdowns you’re worried about!

Bob & Trish: YES!

Michael: Oh.

I want so much to write about all the things that have been happening in my life, but I feel like it’s all happening so fast and my perception of what’s going on and what to do about it changes hourly, so it’s a virtually impossible task!

So that’s a glimpse into the whirlwind.  The most important thing is that now I have some peace in the midst of it.

Besides revisiting the behavior plan and the level of positive reinforcement being provided, the other thing the IEP team did in response to Michael’s aggressive behavior at school was to add a safe crisis plan.

We had had a safe crisis meeting earlier in the school year when the school secretary had (inappropriately) gotten involved and physically moved Michael from the hallway into a classroom, but all we did at that point was clarify for everyone in the building who to contact if the adult in charge of Michael felt they needed assistance with him (i.e. NOT the secretary!).

Now we had started seeing some out of control behavior, with Michael jumping straight from a calm state to yelling and screaming at people, and then a variety of aggressive behaviors, including hitting, kicking and throwing things such as his shoes and socks, chairs and even a trashcan. So the team met to create a safe crisis plan.

The way it was explained to me, the behavior plan tells the adults what to do so the child will (hopefully) not have a meltdown, and the safe crisis plan tells the adults what to do so THEY don’t have a meltdown! Our plan does not include any form of restraint; in fact, the purpose of the plan is to give everyone the information they need on what to do so that restraint will not be needed.

Our Safe Crisis Plan
The basics of the plan are pretty simple – if Michael is hitting, kicking or throwing things at anyone, the teacher will physically block the behavior if possible and will clear the other students from the room.

Next, a second adult will be called to take charge of Michael. Once he is calm enough to leave the room himself, he will go to a separate room with the adult. We chose the speech room so we would have a consistent location; the SLP is only in the building two days per week and does a lot of her work in the various classrooms, so it is usually available.

Then, once Michael has left the room, the other students can return and continue with their lessons. Michael will stay in the speech room until he is completely calm and ready to return to class If he is unable to calm down after 30 minutes, they will call me to come and get him.

Of course, we are all very focused on lots and lots of positive reinforcement of desired behaviors and on intervening as soon as we see Michael start to become upset to avoid any of this, but it is good to have it in place so everyone knows exactly what to do if there is a problem and to lessen the possibility of anyone getting hurt.

NOTE: I thought I had posted this last night, but I just realized it was still in draft form. We actually used this plan today, as he had an incident that turned into a major meltdown and I had to come and get him from school. I’m still trying to process the details and figure out where to go from here as far as he is concerned, but I am thankful at least for a good team that is working so well together.

Note: Since I recently republished the various articles I had written for Root & Sprout here on my blog, I decided to also share a post I had written about a year ago for Adopting the Older Child. I hope to follow this up next week with an update on how it has worked out so far.

I was recently asked by Dr. H to write for Adopting the Older Child about my decision to see a psychologist with regard to my son and am honored by the opportunity to share with you here. Although my son is not adopted, he is a child with special needs, having been diagnosed with autism shortly before his third birthday.

So what brought me to the decision to see a psychologist?

Well, over the last few years (he is almost seven now), I had pretty much given up on typical parenting books and advice because they didn’t seem to work with him. I had read extensively on the topic of autism and worked closely with all of his teachers and therapists to help him progress and to meet his needs, and we had seen some wonderful growth and development in him.

But I was starting to feel stuck. Sometimes things were great, and other times I couldn’t give the simplest direction without hearing lots of whining and arguments, often leading to total meltdowns. My son would also range from sobbing inconsolably to storming off to his room yelling that he was stupid and that nobody loved him.

I tried so many different ways of responding to him in an effort to figure out what would work, but that only seemed to create more confusion. I was also getting more and more worried about his high level of anxiety and his seemingly low self esteem. While I didn’t want to cause emotional damage, I also knew I had to get control of the situation before I had my own meltdown.

I had thought of seeking the help of a psychologist almost a year earlier but hadn’t followed up on it at the time. Now I was desperate ready, so I made an appointment with one of the people that had been recommended to me as an expert in the area of autism. She met with me alone first to discuss what I was seeing and feeling about my son and our situation, and then she started meeting with him once every week or two.

We were very lucky to find someone I really liked from the beginning, although I was willing to meet with more than one if she didn’t connect well with us. After a few months of going to her, I can say that this has been one of the best decisions I have made. My son is benefiting from having someone who can help him learn more about himself and how he relates to other people.

It has also been wonderful to have someone in our corner with more knowledge in this area to help me figure out what is going on and also suggest the best ways to handle it. She has given me several practical suggestions, including things like teaching expected behavior and finding a discipline technique that works for us.

This may be a bit more of a rambling post than you usually see here – I tend to reserve my stream-of-consciousness dissecting-my-day type of thoughts for my other blog, Autism Interrupted. But since the events of today are directly tied into the nature of autism and autism parenting, here goes…

There were a lot of things on the schedule for today. The local Young Eagles annual flight party, where they take children with disabilities for free airplane or helicopter rides, was today. We have had the opportunity to fly in both a small plane and a helicopter over the last couple of years, and it is a wonderful event. There are also police cars that will drive you around with sirens blaring, and muscle cars and fire engines to look at, and it’s a lot of fun.

My husband loves the helicopter rides, so this event is at the top of his wish list each year. However, our local school is also having its May Fair today. I wasn’t really worried about missing it, but thought they might have talked it up at school, so was prepared for Michael to come home and say he wanted to go. Then we got a call that his best friend’s birthday party was today, so of course Michael really wants to go to that.

It looked like things were working out okay when we woke up this morning – Michael had made no mention of the fair, and the birthday party isn’t until 5pm, so Bob got ready to take Michael to the flight party (while I would stay home and enjoy some quiet time). As we got to the point of putting on shoes and socks, Michael began insisting he didn’t want to go. We both tried to talk to him about it and he got more and more upset. He said he only wanted to go to the birthday party, and eventually ended up running up to his room crying and slamming the door.

Bob was very upset and disappointed by the turn of events, but I was, as usual, torn. Do we force him to go to something that is technically supposed to be a fun event for him because Bob really wants to ride in the helicopter? We know he will probably have a great time once he is there, but what if he is kicking and screaming the whole time and it just ruins everyone’s day, including sabotaging the birthday party later, which would disappoint his friend? Do we need to insist on obedience or respect his wishes?

After a few minutes, I went up to Michael’s bedroom to talk with him. I was able to explain that his dad really liked flying in the helicopter and that it normally costs a lot of money to do that, so this is a special opportunity and it would make him really happy. Michael mentioned being worried about missing the birthday party, so I went over the time frames again, that the flight party ended at 3:00 and the birthday party wasn’t starting until 5:00, so we would have plenty of time and wouldn’t miss any of it. I then asked him if he thought he could go and he agreed.

We went down and told daddy of the change of heart, and they went off to the event. Bob was still a bit depressed over the whole exchange, and I commiserated that I know it’s hard but encouraged him not to try to discuss the matter any further and risk putting a damper on the rest of the day. I got a phone call a couple of hours later that they had actually flown over our house and that Michael was getting ready to go up a climbing wall of some sort. It sounded like they are having a great time, and I’m glad.

So, would you have just made him go in the first place, or if he protested even after clearing up the concerns about the timing of the events? Is it okay for him to say no, thank you to an event like this, even if it hurts his dad? How do I help dad deal with the suckiness of the autism parenting experience (b/c I go through it too but much more often in the course of a day, so am a tiny bit more immune)?

It has been meltdown city around here this weekend, with the high point being a several-minute search for Michael after he ran away from Bob in Target. (He completely refuses to accept the fact that he is supposed to stay with an adult at the store. We immediately left the store and began driving home, at which time he announced that he needed to go to a new family that would let him do what he wanted.)

Of course this was a couple of hours after him completely falling apart while we were out shopping for new seating for the living room, due to being told we were not buying the power lift recliner he had fallen in love with. Unfortunately, I had let him sit in it for a while as we looked at the furniture in that area of the store, and by the time I called him away, he had already named it and decided that they were good friends. He cried so hard that his face was all splotchy and his eyes were red.

After much conversation and attempts at redirection, he accepted the fact that we were purchasing the “cuddle chair,” i.e. reclining chair-and-a-half that both he and I can sit in together, and even went back to explain the situation to his friend (the other chair) so that he wouldn’t be sad.

Contrast these experiences to his social skills group last week, where they were talking about happy and sad feelings, and what makes them happy or sad. He was completely flummoxed by his classmate saying she feels sad when her little brother falls down and hurts himself; he couldn’t imagine how that would make her sad.

Despite everything I have read about autism and theory of mind and executive function, I just don’t know what to actually DO when dealing with a child for whom the thoughts inside his head are absolute truth and the advice and instruction from his parents or other adults has very little impact.

I want so much for him to be happy, and to not be so overwhelmed and sad by so many things in his life. But I also want need him to learn to obey us and not run away or whine/argue/threaten when he doesn’t get his own way. We had a couple of really great weeks at the beginning of the year and now things are just getting worse and worse.

So as happy as I am that he is talking and expressing emotion and able to have a conversation (and I truly am very happy about those things), I am sad about how difficult everything seems to be right now.

Woke up this morning with a sore throat and was totally exhausted all day.  I’m hoping it is just a matter of having overdone it the last couple of days and not a relapse of my illness.  I just took some Nyquil because I have a headache and am a bit congested.  Tomorrow morning we head down to Virginia to celebrate Christmas with Bob’s family.

Bob had to work today and he asked me to bring Michael over to meet him for lunch.  We took over the turtle pretzels I had made and Michael wore his Santa hat and handed them out to Bob’s team members.  Everyone thought he was so cute, and many of them remembered the pretzels from last year and were very happy to get them!  Then we went over to the mall and looked at the ornaments at the Hallmark store.  Bob got a couple of them, but Michael decided to buy a new Webkinz with his money instead.  Michael is really starting to learn about saving his money for what he wants, and the new interest in Webkinz is so great for helping with that.

Unfortunately, getting to the office was horrendous.  Michael started arguing about everything when it was time to leave and took off down the street when we went to the car.  I had to pick him up and put him in the car.  Then he screamed at me for a couple of minutes.  I told him I wasn’t speaking to him for 15 minutes because of his yelling and arguing.  By the time we got there, he was all ready to go and happily cooperated with Bob.  Then the second we walked out the door to get in the car and drive around to meet Bob (who was getting his lunch out of his car in the back parking lot), Michael refused to get in and wanted to walk around back. 

I think part of it is transition difficulties and the other part is wanting to be in control of what is happening.  This morning was also very unstructured because I wasn’t feeling well, and I’m sure that contributed.  It is just so frustrating and I get so angry at him sometimes.  I almost feel like I set myself up by relaxing and enjoying time with him b/c I it makes it so much harder when he does fall apart.  I’m not sure what the answer is, but I certainly am spending a lot of time praying for peace and for the ability to handle it without blowing up.