Okay - I Can Talk About It Now

Autistic Teen Meltdown, or: What Happened on Thanksgiving 

So, we had complete #HOLIDAYFAIL this year for Thanksgiving. Still conducting an internal investigation as to why, but pretty sure the usual suspects (relative's house, with barking dogS, and more people than he was prepared to deal with) plus teen hormones that felt tired of being bossed around during his holiday week at home, noise, plus pressure to take a shower all combined into a huge, LOUD, meltdown in front of family, across a golf course (he eloped and I got him back, which set off the screaming and yelling), into the street, and in front of a friend during a food drop. 

It was awful. 

This was the first time my family had seen what a meltdown looks like from James. The stress in keeping calm to manage the meltdown, the embarrassment of the outburst, the pain of seeing my family want to help but not sure what to do, and finally the realization that I just had to take him home and there would be no dinner with the family this year overwhelmed me and I started to cry, which freaked James out. Because as a rule I do not cry during meltdowns (where he can see me). It just doesn't help.

This time, some of the things he yelled at me were extremely hurtful, so I let him see me cry. So now remorse was added to the mix. "I'm sorry, I didn't mean to" came after each tirade. 

When we were home and things calmed down (reassurance that even though I did not like the behaviours I still liked him, being in our quiet home, and cessation of crying), he gave me his version of a hug and said again he was sorry. I thanked him for that and then told him I needed some quiet time now. 

I also said there would be consequences, so no internet and very restricted phone time. I unplugged and hid the router, put his devices in a safe place, and the internet stayed off through Sunday. He earned phone time so he could talk with people. Having myself received the Silent Treatment on various occasions and having a pretty good idea how something like that would affect James, I wanted him to be able to talk with others while still letting him know the meltdown was affecting his privileges.

Oh the talking. We covered how feelings were neither good nor bad, it's how you handle them. The importance of communicating with people before a meltdown happens. Practicing phrases we can say to make that communication easier.

Without prompting, James wrote apology notes to myself and other family members and delivered them personally. When he says he is sorry and didn't mean to, I believe him. I love him to pieces. I also knows that his life will be a lot better if can realize how his actions affect others and he makes it his priority to better manage them. 

Today is Wednesday - it's almost been a week. I can talk about it now.

Some good (IMO) links for understanding meltdowns (and no, I have no affiliations with any of these - I looked at the posted content and thought it was very appropriate for our situation):

• Autism Speaks' Challenging Behaviors Toolkit
• Autism Speaks' Blog Post "10 things that helped me during meltdowns as an autistic child"
• Toolkit to understand behaviors, from Autism Speaks
• A guide to meltdowns, from the National Autistic Society (UK)
• Blog post on Autistic teens and meltdowns, by New Focus Academy
• Article that does a good job addressing meltdowns and what to do after, from the Raising Children website (Australia)

Skirmishes

James is an awesome person. He is typically easy going and is happiest when everyone around him is happy. He is smart and a sleeper, taking everything in and not showing it until he's ready. He has a fun, semi-goofy sense of humour. 

When he was younger, James would skip, jump, and run about - as a very young child he loved to dance about. Now that he's well into his teen years he's discovered the joys of sleeping in lounging his best life in his large, comfy bed. Hormones and hangriness occasionally change his mood and attitude. 

This weekend, I needed James to complete part of his daily routine and he refused. For several minutes, and without losing patience, I kept in his vicinity and repeating the request to complete the activity. James became more upset and made a ball with his fist at my eye level. When I put my hand up in a "stop" motion, he punched it. Not terribly hard, but still.  He also chose to swear at me. 

I explained that I was now removing the internet router, so no internet. I took it out into the garden with me. For several minutes I was breathing deeply, trying to calm down, review what could have been done differently, and listening to see if he would now attempt to open an outside door and elope. 

Eventually, James did come out to show me he'd completed the activity and to say he was sorry. "I didn't mean to, Mother," he said. I believe him, but this could have gone very differently for someone who did not know him as I do. 

I made sure he understood that I was not happy about his behavior and thanked him for completing his task and coming to talk with me. Then I made sure he had a good lunch to eat. The day went much better after that.

The Importance of Control and Expression

Routines and schedules can be tiring, but they give crucial structure to a day and a feeling that one can have some control in a world gone chaotic.

I have seen the importance of a schedule with James during our new, mandatory learning at home routine. It helps him take better care of himself. When checking his school-issued Chromebook, his face looks a bit relieved, and his mouth curves in his smile.

Here are some great handouts to give structure and control in a messy situation:

Thanks to Natalie Long at LONG Creations, you and your child can create a time capsule about this historic situation. Please visit her Facebook page for more information.

I like the way James can give some order and structure to how he is feelings. An outlet for questions. And understand that there are things he can do to keep himself busy and in control. And hey, a writing exercise!

Signal Output Divergence

My father passed away less than two days ago. Even though it was peaceful and anticipated, it was emotional. While I was at his home, I had James stay here with a friend. When I returned from being with my mother and family, I was exhausted and wrung out.

James focused on getting computer time and complained after I had him stop after an hour. He paced to and fro, argued almost every statement I made, and muttered under his breath over and over how upset he was and how mean I was.

I told him he needed to be nicer to me, because my father just died and I was sad and upset. Also, we were going to bed early. He fought that too.

James sometimes has trouble talking about anxiety, sadness, or loneliness. These emotions tend to come out as agitation and behaviours.

I know he understands that I am feeling sad. There is a great big "now what?" disconnect between knowing this and being able to express sympathy or compassion in a recognizable way.

Angry Birds Metaphor

So it's raining and James and I are talking as we make the one big round of errands so we can stay home later, enjoying a warm, dry afternoon. We wound up discussing Angry Birds, always a favourite theme with James.

He had an interesting insight into the Matilda Bird, whom he has been drawing obsessively. To the point of roping me into a hunt for black paper and a white crayon (yes, we had both squirreled away somewhere) so he could colour her.

James wanted to know if I'd noticed that she is rounder before she drops her egg, and thinner after. I conceded he had a point. Why, he wanted to know? I asked him what he thought. His answer startled me:

"I think she puts the angry into her egg and when she drops it on the piggies, she gets smaller."

What a great metaphor for how you the deflated, de-energized state after an angry outburst.

Kimochis: Managing Emotions

Something new from James' ongoing sessions at the Swain Center: Kimochis.

Photo courtesy of The Kimochis® Feeling Lessons

I saw the handouts last week and thought: "Cute! Hmmm, why??" Then I completed the behaviours homework with James today and understood: the toys are something visual and tactile that James can use to understand emotions, body language from others, and learn how to better interact with other and regulate himself.

Each animal is identified with an emotion, and comes with a back story/history. The kids will learn more through a process that looks like it blends story boarding, picture schedulers, and PECS.

Like his biofeedback sessions, these lessons will visually help him connect what is going on inside him with the world and people around him.

This is all my take-away. For more about the actual program, see them online.

I had no idea this was out there. I am excited to see where this takes us.

When Meltdowns Destroy The World

Thanks to Defying the Spectrum for this infographic

We've been up, down, and all around. We skirted a head cold just before Halloween. James has had good days, and ones where self care issues are still interfering with school. He's decided food is evil and refuses to eat foods he's enjoyed for years. I've resorted to constant snacks and calls to get help from a nutritionist.

I've found out that James has not been receiving his 2x weekly speech sessions at school over the past 3 weeks, as the therapist has been out on medical leave. I had to ask if he was getting them to find this out. Now I am asking what the make-up plan is. Communication and speech continue to be struggles for James. Sources of frustration.

There's been a run of healthcare issues that involve more angst and cleaning labor than illness. My eczema is having a fine time and is currently well on its way to splitting open the skin on all my right fingertips.

I am helping my daughter work out that the badly worded math word problems are asking for. Oh the irony. I long to answer "who cares?" for many of said word problems. James and I are working on his reading log. There is not a lot of free time in the day. At night, James has been waking up regularly at 11pm, crying. I help him to the bathroom and he starts hicupping, which makes him furious. I coax him back into bed and he crashes. I am wrung out.

Through it all we've been hanging in there. Discouraged and tired at times, but plugging along. Until this afternoon. When James decided to bug his sister while she was finishing her homework. He ignored requests and warnings to stop. He earned a time out. A meltdown ensued over the next 90 minutes.

Oh. No. All the plans I had for the afternoon (write a letter, bake some breakfast muffins, do some cleaning) went right out the window. Everything narrowed down to helping my daughter finish her math and staying calm while trying to get James to calm down. Both eventually happened. By the time James calmed down, homework was finished and he'd lost iPad privileges for the rest of the day. Most of the afternoon had gone.

I am sapped. And worried. James is going to be a big guy. He gets very upset when people attempt the shush him or restrict him. I am worried about his teenage years and beyond. I want James to have words and tools to express how he's feeling and try and get what he needs  ... not have meltdowns.

I finally figured out James needed to eat. His mood improved quite a bit after he ate something. I am still worried. Hoping we have a good night's sleep, and tomorrow is a better day, with no meltdowns in it.

Magic Marker Monday: Heart Chart

This project is from last year. I love how he includes himself:

Expression of abstract concepts and feelings is a challenge for James. Not only is this activity appropriate for the coming holiday, it's a good exercise in self-expression.

What would your Heart Chart look like?

For more great masterpieces or to share some of your own, visit
5 Minutes for Special Needs for more Magic Marker Monday.

                             
  

Special Exposure / Wordless Weds: Now

It's been another tough couple of weeks. I feel like a broken record, but so it is. We've had another loss in the family -- someone who was far from our daily lives, but part of our family history. Closer to home, a friend and their family suffered a great loss. Dealing with money issues feels like trying to slay a Hydra, and our wonderful respite care person is moving on and out of our daily sphere of living.

These are the times when I feel like crying, but feel best when I can just stop and just be in the Now. Hug my kids. Kiss my husband. Sit outdoors in the green and colour that are fueled by summer. And breathe. Love what I still have, while it's still here with me, in the Now.

For more images from the heart and to share some of yours,
visit Special Exposure Wednesday at 5 Minutes for Special Needs.






               and ... Wordless Wednesday

Day Five of Not So Great

Twenty-four hours, two Advice RN calls, and three phone MD consults later ...

James is still in pain, moaning, and yammying. He is drinking water, walking, and proving he's hydrated in the bathroom. He won't eat, however.

So I am trying to keep him hydrated and on the anti-nausea meds (we run out tomorrow).

Besides being upset that my son has been in so much pain for four days, I am getting frustrated with the tag team of medical records. His new pediatrician called today to check-in, which I appreciate. She then questioned his diagnosis of Autism, quizzing me as to who did the diagnosis and who was tracking his progress?

What. in. the. frickin'. who?

It's almost like being asked to provide a certificate that proves I'm the mom, seven years after the fact.

On the one hand, I am trying to see this as a doctor who is doing her homework before seeing a challenging patient the next day, as well as an opportunity to educate a whole lot of medical personnel about Autism, and working with patients and families on the spectrum. I do a lot of counting on this hand.

On the other hand, I want to yell: "What, just because one of the HMO docs didn't diagnose him as Autistic I will constantly have to remind you of the fact that I asked to get a second opinion and a whole panel of professionals (twice, if you count the MIND Institute) told me: 'yes, your son is Autistic and has some severe developmental delays' ?!?!"

I am sure that's not how it was meant but boy howdy, that's how it sounded.

P.S.: The tracking his progress is funny bureaucratic nightmare kind of way, because they have denied  requests for services that would bring them onboard James' team and allow them to both facilitate and track his progress.

A Question of Death

I have a situation fast approaching that I have not dealt with before. A close family member is succumbing to cancer and there will be a funeral in about a week. I will need to talk about the death and funeral with both my kids. This will be their first experience with both that they will be able to remember.

My daughter, who is very sensitive, will be hearing about a cancer-related death of a close family member for the second time in about a month. I have worries that this will be a little hard for her to take it in stride.

This will be my first attempt at talking about death with James, and I am not sure how much he will be able to process or how to tackle it. Although James is 7, he has difficulties with abstracts. We are used to seeing this person at big family events, but James might not even know who we are talking about.

About three weeks back, however, I twice brought both kids with me, while this person who means so much to me was still able to enjoy visitors. He has no children to carry his memories; I want my children to remember him. In fact, when I asked him what I could do for him, he specifically asked to be remembered and not forgotten. Oh my yes. There are stories, memories and lots of living in our family, and he's been a part of so much of it.

So I am now so very glad I was able to have the chance to have the kids with me so they could specifically remember him as a person. An important, gentle, loving member of our family.

However, because of these trips, James (as he sometimes does) has fixated on this person, asking where he is and can we go and see him again. I am sure he will be doing this at the funeral. So I anticipate I will be taking him out of the church if he starts asking loudly. I am trying to organize a kind of social story about funerals -- what they are and how to act at one.

I know this will be difficult, but death and funerals are a part of life and living. I think the more the children are included in big family events and shown how to care, share, and show respect, the better they will be prepared for life. That does not mean that I cannot do a little preparation.

Does anyone out there have any tips about talking with an ASD child about death and funerals?

Thanksgiving Baking: A Timeline

5:00-9:30 Fuel injection (aka making and enjoying a pot of Peet's Holiday Blend). Trying to keep a damper on my darling (loud) boy.

9:30-10:00 Assemble and bake 2 pie crusts. TV is off. Big sister is entertaining herself. James is stimming loudly and playing with his alphabet puzzle. Also butting in to ask for milk while I am up to my wrists in floury dough. Go away. I love you. Later!

10:00-10:15 Chop and prep ingredients for an egg white veggie quiche. Because the custard tart only uses egg yolks. There is no way I am either going to keep 12 egg whites in my fridge or toss them! Keep after James to turn it down as he stims "AAAAAAHHHH" and "EEEEEE." These disciplinary admonitions are met with dinosaur mutterings and scripting from Squidward.

I am keeping the red eye. This little stinker woke me up at 5am!

10:16 Send husband out for eggs. Could have sworn recipe called for 10 eggs. Nope, it's 12. How many do we have? 11. #chefFAIL

10:35 Husband returns ... with mint chip ice cream too. I love him!

10:30-11:00 Cheer Girl Child on as she squeezes tangerines for custard tart. Body count: 13. Glad I bought the whole bag. We've counted 23 seeds in one half - yikes! So glad she thought to strain as she squeezed.

Meanwhile: James helps stir the egg whiles and cream for the quiche, then runs off to the trampoline to yodel and jump some more. Bizet's Carmen is playing on the classical music station -- Yay!! Explaining themes and motifs to my 8 y-o daughter. Husband pulls James into back bedroom. I love him even more!

11:00-11:30 Quiche is in the oven and baking. Totally guessing at quantities, heat, and bake duration. Meh. Finish citrus squeezing and assembling materials for cooking the tangerine custard. Break out to fix lunch for family.

11:30 Start cooking custard and watching daughter do a fashion show for what to wear to dinner tonight. Exciting!

11:36 Quiche is done. guess what I am having for lunch? Mwa-ha-ha!

11:45 Custard is really starting to cook.

With my fabulous All Clad pot set, I scoff at a double boiler!

 11:50 Added final ingredients to custard.

 12:45 Poured custard into pie crust. Clean up time! Garfield and Scarlotti are duking it out in the family room, sound-wise. Assemble materials for Corn Souffle.

1:00 Custard pie in fridge. What is a scallion? Is it more like a green onion or a shallot?

1:01 Google sez: green onion!

1:01-1:14 Assemble ingredients for corn souffle. Love my hand slicer/mincer. Just like Grandma Lee's!

1:15 Corn souffle in oven for an hour. Time to rest my feet. Hoping I got the temps right because .. look what happened to our controls a couple weeks back during a cleaning?

Wishing you and yours a very Happy Thanksgiving!

Randomness & an RIP

I remember being an Art Major in 1986, looking at a Macintosh and wondering "how do I use this?" I was certain I would never use a computer. I didn't want to. Flash forward 10 years and I am looking at a colourful, inviting desktop and wondering "where's the C:/ drive?" Laughing like crazy when someone shows me how to make the Big Electric Cat belch.

Skip ahead six more years and I'm posting an update to our website as I headed out the door to deliver our first child, and timing contractions two years after that for my second on the internet, at some stopwatch site I'd Googled.

I've been working mostly on Macs since 1996 and they have widened my horizons. When his grandmother first got an iMac, James found PhotoBooth and all the special features,taking pictures  almost immediately. He was 5. I use iTunes for music, watching movie trailers with my husband as a mini date night, and can easily create custom CD mixes for my daughter, who needs her special songs to lull her to sleep. Hello Skype for all our long-distance relatives!

We've seen every Pixar movie made, and love them all.

What would our world have been like, without Steve Jobs?

Rest in Peace, Steve. You have lived a real life and changed the world. And made many of us proud to "Think Different," even before some of us heard about Special Needs for our children.

Apple's home page on October 5, 2011

Movie Review: Toy Story 3

Screened this one with my husband, as I'd heard a few things from people who'd seen it that made me think we needed to preview it before going with the kids.

Oh so heck yeah. Kids are not going to see it any time soon.


*** Warning: Semi-Spoilers Ahead ***
==========================

My daughter would not do well with the issues of toys being made prisoners and being beat to heck in school. She would ask me uncomfortable questions, such as do parents replace lost toys and pretend they are the old ones ... and have I ever done that? She would not be happy with my attempts to plead the 5th. Especially because the answer would be "yes" to the special kitty from a loved relative and her Woody Doll.

I think the hulking mafia Baby doll would freak her out. She'd be seeing it in her dreams and telling her second grade teacher about her doll hallucinations (I know this because last year we went through this with the imaginary rat friend she had).

She'd be worried about Bo Peep being gone, and wonder if the same thing would not, some day, happen to her, or a special toy that she loves.

Also: She does not really get Barbie and Ken. Do we really need to give her more proof that Mommy finds really odd things to be funny? And: I am trying to get her to clean her room. The girl has inherited my clinging genes. This movie would make her lock her door and go into hoarding overdrive.

The noise level for James would be tough, especially the preschool. OMG, the school. He's starting a brand-new one, complete with new teachers and aides next year. Last thing I need him to watch is noisy, violent kids terrorizing the nice, brave, friendly toys. Watching them try to ... escape the school by running away. Dudes! Do *not* put this idea in his head!

The furnace scenario at the end would completely terrorize them. I don't know if James would get the fact that, without a rescue, the toys would all go up in screaming flares of flame and die, as his big sister would. But the noise and very visual distress on the faces of all the toys would get to him, and not in a good way.

Heck, it gave me nasty flashbacks to being in the Oakland Hills Fire in '91, where parents and I had to run for our lives, knowing that our house, photos, and other life things (including my long-loved toys) were incinerated behind us in that roaring, whirling 2,000°+ inferno.


 That said: I loved the movie. The Spanish Buzz and Ken? The poker game at the top of the vending machine? OMG, hilarious. Mrs Potato Head's mystic eye was an excellent and intriguing plot/story device. The little girl who really loves and plays with her toys was so touching, and neatly avoided being maudlin. The final play scene with Andy? Was real and satisfying.

Overall, I thought this movie was excellent. But I don't think I ever want to see it again. I also think that there will be children that will not have problems seeing TS3. Mine just don't happen to be in that crowd. I think when they are both older (say around age 9 or 10) they would enjoy many, many parts of this movie and not be overly bothered about the dramatic, semi-traumatic scenes with toys facing separation, imprisonment, or almost certain flaming death.

SOOC Saturday: Signs of Spring

When we first moved into this house six years ago, my mother gave me a lot of daffodil bulbs to plant in our new garden. My daughter, who was learning to walk, helped me to plant them. Every Spring they come back as another miracle. Despite the nearby and invasive cacti, potatoes, and now lavender.

The vase is an engagement present. There are rosemary sprigs in there as well. Rosemary is for remembrance.

I need a little inspiration and remembrance of the good things right now. Our family is going through a prickly, hurtful, dry, hard time. We need our little miracles to keep us going to another day.

The Slurping Life is stormbound. Visit Melody and check out SOOC Saturday/Sunday entries past & present!



  

Growing Pains

James is still going through what I hope is a transitional phase. He has been using less words over the past two weeks or so, after a small explosion in his vocabulary. His sleeping patterns are messed up and instead of sleeping at night, I can hear a Party of One in his room. This makes working with his SHAPE asst. the next afternoon extremely challenging. He also is doing more screaming and face hitting, which I try to counter with asking "What do you want, James?" and "No hitting," followed by time-outs.

I am trying to look on the bright side. My daughter did similar things before leaping forward developmentally. James has largely been sunny, serene ... and about a year "behind" (developmentally). He still loves going to school and taking the bus. He loves looking at books, the Cars trailers, and singing. His sister can get him to play with toy fish and cars. He loves to do his Flash cards with her. I imagine that it must be pretty frustrating to start to realize all the things you could do ... and then realize there are some things your fingers just can't do right away, or that you are trying your darndest to communicate with people, and it doesn't work. I'd get really tired and cranky too.

So then I try and find ways he can do more things with us, and make sure I make time to just hold him and tell him I love him.