Echolalia and gossip

This has been a difficult subject with various family members for a while, now. If you're not familiar with the term echolalia, its basically repeating just about anything you hear, over and over (a form of perseveration). A phrase can "get stuck" in either your short term or long term memory, and you keep repeating it, often in exactly the same tone or sing-song pitch. My son has to fight this urge on a daily basis, both short term and long term. This can be a positive thing in that at least he's showing a desire to communicate (which is difficult for most on the spectrum). The hard part is that its even more important than "normal" for parents to monitor what their children are exposed to.

There are members of the family that I grew up in who tend to gossip (specifically rehashing old dirty laundry, or making speculations about each other, who's talking to whom, who's not talking to whom, etc.). This has gone on for years, and it's gotten to be so "normal" that they don't seem to be able to recognize when they're doing it. This isn't healthy in any family, but when you have children on the autism spectrum who suffer from echolalia, ... well, "dangerous" is putting this lightly. A while back, I tried to get my children out of a room before this started, but my son caught a phrase that he shouldn't have been exposed to. He would perseverate on that phrase even 3 months later, and he would get just as upset as he did the first time he said it. I don't know how much of it he understands, but we've found that he usually understands more than people give him credit for.

I had to set some boundaries (although its been very frustrating that some in my family have no idea what that means,...if this is new to you, please read the book "Boundaries" by Cloud and Townsend, ...its not specific to autism, its a way for everyone to have healthier relationships). After talking numerous times about what is not okay to discuss in front of my children (and still having those moments that we couldn't leave the room fast enough), my spouse and I decided that we would take a break from visits with certain relatives for a time. I don't want to keep my children from knowing their relatives, I just want those relationships to be a positive thing for my children to experience.

These conversations are not easy to have with family. Its frustrating, I had my 8th talk with them today and the understanding just isn't there. We're getting to a point where they're wanting to resume visits, and they don't understand why I'm insisting that the first time be just adults without my children there. I need to make sure that we're able to talk without toxicity before I can bring my kids back into the equation.

This is doubly hard, because this is a new role for me. I was the quiet peacemaker in the family I grew up in,... the one who listens, who makes as little demands on her family as possible (if you don't expect a lot, you usually don't get disappointed). Its been strange to realize that some relatives aren't able to hear my words, if that makes any sense. Our relationship is fine, as long as I don't speak. When I say something they don't like to hear, the conversation just continues like I didn't speak at all. Part of me wonders how much of my being a listener is from my own disposition, and how much is just because my words aren't heard, so why speak them?

I can't play this role anymore, it isn't healthy for me or my family, but especially not for my immediate family. There has to be role models for the children, for them to grow and develop. When autism enters the picture, the need for a healthy role model increases exponentially. So, we set our boundaries for what is healthy for our immediate family, and leave other's growth up to them. I can't do their growing for them, no matter how much I want to. It prevents them from growing (and it took having children on the autism spectrum for me to finally see that, go figure,...).

This might sound selfish (or relatives may tell you its selfish and not Christian, laying guilt on you thicker and thicker), but its not. Its protecting the good things that God's given you, and creating a safe place for your children to grow. Dysfunction is a term thrown around so casually these days, its almost lost its meaning. There's so much broken-ness in this world, it makes me sad that what is clinically (and biblically) healthy looks so weird to us lived out.

Just some thoughts,...

Welcome to Autismland, Part 3

New issues will become a way of life,... but it also becomes "normal" to figure out how to help your child cope. Issues frequently pop up at school. For instance, at first, if they tried to have my son leave his classroom to go to Occupational Therapy or Speech Therapy, he would lose all ability to cope as soon as he was outside his classroom. Usually, if I would talk with his teachers or come in to prove to my son that what his teachers were asking him to do is ok, Mom approves and expects it to be done,... he'd be okay with it, too. In the prior example, I went to the school and walked with my son and his aide to every room in the building that he would be going to, to show that this is what he needs to do, and he'll be okay doing this.

As his functionality increased, his goals and expectations at school would be increased. I won't go into each detail of this here (you can email me if you're going through something similar and have questions, that's completely ok). Basically, progress is made up of the tiniest steps with long spans of almost no change, then abrupt explosions of understanding. This is a pattern that keeps repeating.

It was very hard not to be depressed at times, living this out. With each new gain, though, there's new hope. One of the things I did to keep motivated during this time was keep every sheet that had any kind of assessment on it in a 3-ring binder. When I'd get down, I'd start at the beginning, remembering just what life was like when he was first assessed and celebrate how far he's come. Its funny how you forget just how different life was, even 3 months prior.

My daughter was tested at 18 months, and met the criteria for autism, too. It's in different ways than her brother, but she was noticably quirky, too. Due to her age, we decided to wait and go with the ECDD (early childhood developmental delay) label. She would receive all the same interventions and have access to the same specialists, and we could have her tested again later to see if she still met the criteria later on. Both children have made remarkable improvements during the last 3 years. We've been doing "Mommy's Summer School" to keep the children on a schedule over the summer. Both really like going through the centers. We try to keep it fun and creative.

It seems to me that the biggest difference between parents of typical children and of those on the autism spectrum is the issue of rose-colored glasses. With autism, you can't afford them, and have to be aware of just how many variables in your child's life you can't control. You can study every known facet of autism, but that is never going to "fix" your child. You have to put your words and thoughts into action, start the interventions and do everything you can to help them look toward the reality outside, instead of withdrawaling deeper and deeper into themselves. But above all, for myself, the most necessary part was praying to God. He's the only one truly in control of this life and has been since the beginning. There is so much that isn't known about the autism spectrum, with what causes it, what the best treatment will be for each child. One of the most humbling parts is realizing just how much of who your child will become is in His hands, just like it's always been.

"Autismland" is a very dark place to be, especially while you're still new to it. As soon as you start to acclimate to it, the landscape changes on you. Eventually you get used to living in this state of flux, knowing that a much more capable set of hands is molding your children.

This is what normal looks like to us now.

Welcome to Autismland, Part 2

After he was diagnosed, my husband and I dealt with it in different ways. I kept combing through every resource that I could, trying to understand every possible intervention to try to see what would work best, getting familiar with all the technical terms and jargon as fast as I could. The one thing every resource agreed on was that the earlier the interventions started, the more likely the child would have a higher functionality. We were losing months just getting through the red tape and it seemed like there was an everpresent clock ticking away in my head. Every second lost was a lost opportunity. I started researching user-friendly therapies that I could do at home. The easiest were sensory therapies (a good resource is "The Out Of Sync Child Has Fun") and oral motor therapies (like brushing the inside of his mouth with nuk toothbrushes).

My husband had a harder time seeing the autism. After we were given the diagnosis, his response to the professional was "I don't care what you call it, as long as you give him the help he needs". I am so thankful for my husband, and was so glad that we were in agreement on getting started with the interventions. What I didn't realize was just how long it would take for him to accept it, and be able to see that this was more than just some buzzword attached to our son. It took time for him to be able to see the autism.

One of the books mentioned that the way we reacted as a couple was a very common, almost stereotypical reaction. It was a very hard time for everyone in our household. It's a lot to accept, and there's also this stigma attached that its not okay to talk about it. The first year seemed like there wasn't enough time to process anything. What I didn't realize was that I really needed to be able to talk to someone, anyone, about what I was feeling. When that made sense to me, I was shocked to realize that I couldn't think of anyone that was ready and available to talk with me about this. I had the teachers and therapists for all the candid discussions about what was working well and where there was struggling, but having this kind of talk with them seemed above and beyond the call of duty.

If there's one bit of insight to gain from any of these words, its this:

You have to talk about what you're going through, when you are going through it, with SOMEBODY. Period. If you don't have someone in your life that you feel comfortable sharing this with, find someone. Take a risk, and share what's going on inside you, because if you don't, you will burn yourself up from the inside out, leaving you worthless to help your child. If you won't do it for yourself, do it for your son or daughter. This is not some touch-y, feel-y propaganda about sharing your feelings. This is coming from an extreme introvert, someone who's nature is to bottle everything up inside, being more concerned with others than themselves. Bottling this up WILL BREAK YOU. Is that clear enough? You're not imposing on someone else. Give someone the chance to help you heal, so you can give your special needs child the care they need.

Whoo! I got a little excited, there. Let me breathe for a minute. Okay, back to our regularly scheduled program,...

I became a stay home mom, took care of my two young children, tried to take advantage of teachable moments during the day, clean house, and keep researching. I became a full-fledged hermit, in truth.

After age 3, the teachers no longer come to your home, so my son had to go to Croydon Avenue School. When the school year started, I had to watch my 3 year old ride away on the school bus (John had called into work to come in late, because he knew I'd be a mess). While my son was at school half days, I was at home, caring for our new baby and trying to get caught up on housework. Since I was also "coping" by being a hermit, I didn't want to leave the house. I started getting nervous being around other people, for fear that if they asked me a well-meaning, innocent question like "How are you, today?", the levy would break and I'd flood someone with everything that was rolling and churning inside me. That, in my mind, would have been unforgivable (This type of thinking is messed up, by the way). There was also the fear that I would be jealous of friends that had typical children with typical problems,... that I would feel more alienated in talking with them about the fears that were running unfettered through my being (This does happen, unfortunately, and its normal for you to run into this, especially during that first year of being labeled).

Welcome to Autismland, Part 1

Roughly three years ago, while pregnant with my daughter, my world was relatively typical. All things considered, life was pretty good. My 2 year old son wasn't talking as much as all the books said he should be, but most folks I mentioned it to seemed to think I was overreacting. Most days, I agreed with them. My husband and I are fairly quirky people, so it shouldn't be surprising that my son had his quirks, too.

After delivering my daughter, amidst all the papers the hospital gave us, was information through our area's school system on receiving free developmental screenings. When I called, I mentioned that I knew this was available for my daughter, but was wondering if they could come take a look at my son. That wasn't a problem.

During that first visit, I kept waiting for this professional to laugh and confirm that I'm overeacting. That didn't happen. She was very pleasant, but felt very strongly that he needed to be seen by more professionals on staff. After multiple visits from multiple specialists, we were referred for an MET (multidisciplinary evaluation team) exam and a kind-hearted therapist mentioned that I should start preparing myself to hear the word "autism".

Autism? Like Rain Man?!? After the panic attack wound down, I did what I always do when I don't understand something. I went to the library and checked out every book on the subject, then started researching online. The mad frenzy to soak in as much knowledge as possible had begun. I kept thinking that I would find some kind of proof that this was wrong, or find a different solution.

It is extremely disturbing to keep finding lists of my son's quirks repeated in book after book, about a lifelong condition with no known cure.

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Tiny Steps

Happily, my freak out factor is lower today. I have my first interview set up for Monday, for a job that would be missional relationship building in addition to bringing in some money. Of all the jobs I've applied for, this one really sticks out (and I'm less worried about the interview on this one, because it deals with something I already have strong opinions about; its more likely that I'll be able to explain myself, even though, on paper, this is a job that I'm less qualified for than others I applied for,...regardless of how it goes, this state of calm is definitely a God thing).

Even though my children will both be starting school this fall (at the tender ages of 3 and 6), its still hard for me to wrap my brain around the idea of not being home with them fulltime, anymore. Both of my children have special needs, and for the last three years, my biggest focus has been on how to help them learn how to learn. My "job" has been being their advocate, communicating with teachers and therapists on how to translate what my children were feeling, since it took such a long time for them to begin to be able to say it for themselves. They needed me to be completely involved to help them communicate, especially at first. Maybe I'll make a separate post on what all this entailed, later.

Now, after much hard work by my children and everyone involved, they've both made tremendous progress. They are working on being more independant and learning to focus on what their teachers are trying to tell them. It means its time for Mommy to step back and let them try out what they've learned in a safe, controlled environment. This is very hard to do. Our world isn't "back to normal", by any means, but we've adjusted and are well versed in what to pull from our bag of tricks to help keep our kids on an even keel. Now, we're setting aside more of the tricks and seeing how they can cope. Soon, I'll be juggling family duties and work duties, and I'm not overly gifted with coordination. Like I said, this isn't easy.

But I'm not as freaked out as I was.