Month: December 2017

Lessons from Christmas in the Alphabet Soup

Now, if you have read any earlier posts, you know in our home we live with a number of medical diagnoses with numerous acronyms, i.e. an alphabet soup. So, when I use that term, it isn’t derogatory but gives you an idea of the jumbled mixture we have to navigate.

Every family I have ever talked to or read about who have children on the spectrum, with ADHD/ADD, anxiety, sensory processing, mood disorders, and any number of other things that make social events a delicate dance fraught with minefields we don’t even see. As such, holidays can be some of the worse times for these families. Holidays are days full of unstructured days looming before us where the schedule changes frequently and the number of people we are asked to interact with can grow exponentially and involve many we don’t know well. These kinds of things can be very stressful to the child or adult dealing with any social communication problem. This year, we had the kind of rough Christmas day we haven’t had since early in our adventure as parents to exceptional kids. And while I didn’t really learn these lessons fresh this year, it certainly reminded me that I must stay vigilant to all things that can make or break a day.

Lesson 1: Be aware of changes the day before you are scheduled to be somewhere. This year, number one son did not sleep well, he probably only got a couple of hours of sleep. He was excited for Christmas, but he also suffers with insomnia and seems to function fine with little rest. This can be common with kids on the spectrum, especially. But, no matter how well your child can function with little sleep, holidays with set expectations can ruin that. If I had kept the idea that little sleep with high expectations can be difficult, I could have built-in more ways to help him reset for the family get together and the sit down dinner. I also would have been more understanding and accepting in the moment.

Lesson 2: Stay alert to warning signs and phrases from your child. In our world, avoidance of tasks is normal. Yet, Christmas day saw a rise in avoidance on a day that is typically filled with interaction. His need for reassurance through tactile input (affectionate touch) was high even without a corresponding meltdown and activities that normally interest him brought little show of feeling. By just being annoyed at the constant avoidance and need to be touched while we are busy with other things, I missed realizing that he was in an emotional and mental crisis where he needed help. I didn’t help successfully because I was stuck in my own idea of the day.

Lesson 3: Which leads us here. Don’t be married to your idea of the ideal day. When you live with people who work twice as hard as most just to understand the social cues and become uncomfortable and often inconsolable when away from home, you have to become adept at making plans knowing that they might be scrapped or totally overhauled because someone is having a meltdown or is just unable to function well in public. Sometimes when the kids are doing well, I forget that I must be flexible in the extreme. I did that this year. Even as I watched him meltdown and lash out, I didn’t immediately recognize that he needed a bit of extra help. Even as I talked to him about having dinner with the family I was seething a bit on the inside at the idea that he was refusing to come to the table. Something he is always required to do and had done many times in the past, was almost impossible this day.

I had become complacent you see, I expected things to go well because they had been going well for a long time. Instead of taking each day as they come, I had plans I didn’t want to change, I wanted some commercial idea of a perfect day and I didn’t stop till it was almost too late. It was evening before I recognized that what I was seeing was his inability to control himself and crying for help in order to do that. He didn’t want to make everyone else uncomfortable or delay dinner or run away when he should stay. He needed help in grounding himself and coming up with ways and space and time to be comfortable with what was expected of him. It didn’t matter that he had done it countless times before, what mattered was how he was feeling at that time, on that day. More than anything, kids and adults who struggle with any or all of the aforementioned disorders need time. Time to think, time to process, time to be. We have to be willing to give that to them recognizing that even if we don’t have the same struggle we all have had a situation in which more time helps greatly. We can’t be quick to give it to those we deem neurotypical and not to those we deem neurodiverse.

Personal Advent Season

For the past six years, I have been marking each year in remembrance of the day my son died, while learning to dread the anniversary of his due date all the more. Thanks to Facebook’s “On This Day” function, each December 14 I am reminded of all the love and support as the due date dawned without even the chance of his arrival. My mom friends rallied to give words of love and thoughts of me as this date shared heavily among expectant parents, arrived while he had already arrived four months earlier to say goodbye.

It took about two years before the reality of the due date coming with no baby really set in. Frankly, it was a lovely gesture that so many remembered a date spoken of fleetingly, months later, especially after the sudden horror of his being born still. Yet those first years after his death, I was almost wholly transfixed with the date of his death. I dreaded it, I loved it, I celebrated it, I wanted to hide from it. August 11 came each year and I felt dragged back into those frightful hours as we waited for him to be born still. Gradually I experienced the gift of God’s peace on Hardison’s death. Of help in feeling this peace, was discussing the continued preaching of Paul and others after being persecuted in the early years after Christ’s resurrection. One thing covered in the discussion was the idea of not focusing on the persecution, but the perseverance. By keeping our focus on God, we can stay the course by virtue of His love. When we are focused on the persecution (struggle, opposition, tragedy) it is much easier to become angry, disillusioned, and to give up. God’s love is shown in the understanding of our turmoil because Jesus Christ experienced the struggle of human life, in part to aid us during our times of need. I took these known ideas to heart more than ever and eased some of the flailing of my soul that I felt upon Hardison’s death. Even so, I met August 11 with pain long before the date showed up on the calendar every year. Somehow, despite my best efforts it still loomed large. Understandable, I know, yet December 14 would sneak up on me and then strike me down based on friends’ remembrance. Then, this year, I learned to appreciate the coming reminder of his due date all because I made a connection between it and the Christian celebration of Advent.

The Christian advent has come to be all about anticipating the second coming of the messiah. Christians wait for Christ to return and fulfill the promise of His eternal kingdom. Each year during the four Sundays leading up to Christmas, a time which has come to represent the birth of Christ, we look back at His coming and forward to His coming again. Even when not speaking in the Christian sense, advent can be defined as “the arrival of a notable  person, thing, or event.”  While reading a devotional taken from Bo Stern’s When Holidays Hurt, this statement took on a whole new meaning. Ms. Stern says “One of the reasons Jesus came to dwell with us – and is coming again – is to wipe away every tear.” Did your lightbulb go off too, based on your own circumstance or what you have read of mine? The bells were ringing like the sound when you get an answer right on a game show and the lightbulb illuminated. I could look upon the advent of Harrison’s due date as a reminder of the love and joy we were anticipating with the advent of a new member to our family. The way Christians look forward to the second advent of Christ, a member of our eternal family. I will still be heart sore and sad as December 14 arrives, but I can also view it as a personal advent season, a reminder every year of what Hardison means to this family. No longer do I only have to be reminded of when and how we lost his physical presence. I don’t have to be bombarded with sadness once the memory reminders start showing up on Facebook, I can reach back to the happy shock the date originally stood for.

These thoughts on personal advent seasons are not only useful due to the loss of a child. Most loss, sadness, and pain, can be brightened by the idea of the remembrance of the excitement of arrival. It may be you will look forward to the coming of justice, of peace, of love. But look forward in anticipation, not just back in sorrow.

Mommy Needs A Time Out

I am struggling with a way to talk about my day without sounding like a dictionary of clichés, but I really don’t know if that is possible. Or maybe, it isn’t quite possible for my brain to work in a manner that does not rely on clichés to get its point across.

I have talked about my autistic son and our struggles a number of times here, but I haven’t shared much of his sister’s journey. She is not autistic but does struggle with being twice exceptional, or 2E, and being the sister of the child who is different. If you want a refresher on 2E, you can read my post about it with some educational links. She is currently also in therapy to help her deal with anxiety and other coping skills needed to traverse her world as a gifted, asynchronous student. And all that sounds wonderful, today was a dose of the gritty reality.

We have talked about her school day, she seems to have had a good day and is excited because she got to spend money in the “Holiday Shop” at school. Now, this is set up so the students can pick small gifts for their family. She has apparently spent most of the money on gifts for herself. Besides, it isn’t as if she has earned this money, she has to ask us for it. She has eaten, fast food cause it was that kind of day, and has been given a deadline for rest in anticipation of homework time. Every time, I think that will be enough. That speaking to them in a reasonable manner will allay struggles against doing tasks they don’t won’t to do. It felt today as if this technique only works about 10% of the time. Whenever things are going bad, it is hard to see and remember the many good times. The times where you get more cooperation than opposition and more smiles than tears seem light years away, almost as if you have never experienced them. So, it comes time for homework and because I have told her to allow me to get the homework out and bring it to her, she has lost her mind. Screams are heard, bodies are thrown around, pencils go flying and papers are torn. What? Really? Because you can’t get the homework folder, you are now incapable of reading the directions or completing your homework. You need your parents to sit with you, you don’t need to calm down, you aren’t going to your room, you won’t stop screaming at your brother who is only trying to help. Her loving disposition has turned into that of a wet cat cornered in an alley. She is kicking, screaming, and scratching anything or anyone who gets close. She can’t tell help for harm anymore and no rational thoughts are going through her mind.

It always starts so innocuous. We are skipping through the tulips and then BAM! a bull comes out and tramples us under his hooves. That is how it feels. You are doing all the things normally noted to ensure a smooth transition between school and home. Yet, sometimes those techniques don’t do what they are designed to do. She needs more time, but she won’t say that, it is just meltdown over not being allowed to get her homework. Now, you may be thinking, why didn’t you just let her get her own homework. To be honest, I was  executing a plan which included them cleaning up the tasks they were working on while I distributed homework. I had a plan and wasn’t flexible fast enough to head off the meltdown. I don’t always get it right. That is the key. I just don’t get it right every time. We think once we are parents that we will somehow be magically equipped with the right response to every thing that happens. The thousands of parenting books we are told we should read in preparation lulls us into thinking that is all it takes, knowledge of what to do when. Well, the real world doesn’t work like that and not just when it comes to parenting. I am struggling like most parents I know, to get it right. Parent guilt is a thing, especially if you are wholly invested in giving your kids a solid foundation for going out into the world. Which, I must say, I think is every parent until proven otherwise. It helps me sleep at night, true or not. I start off with the calm, low voice. You know, the one designed to force them to listen hard and reassure them you still love them. No matter that they have pulled everything off the shelves in Target, you are here, a never-changing bulwark of love. You constantly redirect the behavior, repeat the requirement, and swallow your tongue when she screams “I don’t care” and throws the pencil for the fifteenth time tonight! Then, by time twenty, you have lost it too. You want to let your inner seven-year old out to play and that seven-year old inside you wants to kick and scream to voice their displeasure and show the kid you can do it too. You can meltdown without a care in the world, and while you are doing it, if you are doing it, it feels freeing and fun. Then immediately you feel disgusted with yourself, at your lack of ability to not let an eight-year old drag you down into the abyss. You scream and then you rein it back in, a desperate attempt to re-exert your control. Frankly, it hardly ever works. The only way to really get control again is to apologize for your behavior and take yourself off to lick your wounds. Basically you have to do all the things you tell the kids they need to do in order to change their behavior. Ugh, it is such a bad feeling when your kids make you eat your words. I take this moment to tell them that Mommy needs a time out, then I run and lock myself in my bedroom in a desperate attempt to keep them from following me.

And that is the lesson you have to learn for yourself. Sometimes, Mommy needs a time out in order to be tuned in to the other important things. Because, honestly, the homework was only the straw that broke the proverbial camel’s back. She was obviously carrying around feelings about something else that had taken place in her day but couldn’t really articulate that. A meltdown over homework was her cry for help. Me screaming about the definition of “fair” was mine. So, I calmly told them I should take a time out since I was resorting to raising my voice. Then I pushed them out of my room and locked the door and read a book until I could think about opening that door without screaming.