Freeing the tongue

Mak started in speech therapy in March of 2010. I clearly remember his first appointment. 

His wonderful SLP (speech-language pathologist for the uninitiated) asked him to pick a blue ball out of a group of objects. He knew his colours at that age, which I knew because I watched him play games on the computer. He did not, however, understand her question. In frustration, he threw the toys and ran to hide in the corner. 

While I apologized profusely, she calmly replaced the toys on the table, called him back, and asked again. The hour we were there consisted of the same pattern of behaviour repeatedly expressed, and no apparent gains. We left, after booking next week's appointment, wondering whether we would ever be able to get through to our son.

He could talk, unlike many autistic children. His verbal acquisition had, in fact, been entirely normal, even precocious. I go back occasionally and read posts on my 'birthday club' at a parenting website where I bragged about his advanced skills. By fifteen months, I described him as a child who used words first and requested items he wanted using his considerable vocabulary. 

By eighteen months, that description was no longer true. His precociousness had devolved into what some refer to as 'block' speech. He would use memorized sequences of words in situations that might possibly apply, but had no concept of the meaning of the individual words. "Bye thanks for supper" was a block he used for every parting. The vast majority of his speech was gleaned from Thomas the Tank Engine. 

Even though he did have several blocks, his use was both inconsistent and often inappropriate. The few times he did use spontaneous speech, it was often in ways that most people would not understand. Any spontaneous speech was often symbolic - toddler metaphors, if you will - and only made sense if you were familiar enough with his activities to be aware of the connections he would make. And even then, much of it still baffled me. 

For the first six or so months of speech therapy, much of it was giving him more blocks to use so he had some form of functional communication. He easily understands "in situation a, say b." We worked on giving him an entire lexicon of such terms. Eventually, he started putting them together,but he still struggled to understand what to say if "situation a" was not the exact scenario that had been laid out. For example, I told him "say 'excuse me'" to get around someone in a store. In the next aisle, he was saying it to a shelf. I clarified he should only say it to people. Problem solved. 

Similarly, if a question were phrased differently, he wouldn't understand it. It took us about six months for him to reply to "What is your name?" But he still would just cover his ears or ignore the inquiry if someone asked "can you tell me your name?" Asking "what is your age?" due to the similarity of the question, would result in him giving his name. 

For over a year, asking "what did you do today?" resulted in this response: "Kick blocks." It evolved to "I kicked blocks" when he learned to use I. Then "I kicked blocks hardly" when he learned adverbs. 

If you think about it, there are millions of potential situations one can run into every day. It is impossible for us to give him the words for every possible situation, or to teach him how to respond to every possible inquiry. We needed to teach him how to understand the individual words and put them together himself. 

That proved to be an enormous undertaking. 

On Siblings

Since we started to suspect something was different about our son, I have read a great deal about typical child development. It became apparent that a great deal of his 'quirks' from infancy and toddlerhood were not so much developmental oddities as they were symptoms of autism. 

As he is our first child, it did not seem odd to us that at three months he showed distinct preference for anything orange. Orange things would calm him, green things would visibly bother him. Certain sounds that should be soothing would make him scream. 

He never particularly liked faces, and it didn't bother me that he never looked in my eyes as he nursed, as my friends babies did. I just figured it was his personality. He never pointed at things, did not indicate that we should show interest, and he absolutely never went through separation anxiety. 

We just figured we had a young genius who was emotionally mature and too busy learning. 

Oh, first-time-parents-naïveté. 

Since Di was born nine months ago, the profoundness of our ignorance (or perhaps denial) has become apparent.

She is an entirely normal baby. Perfectly typical in every way. She has met every milestone within the average ages, she is very social, she has separation anxiety (I must be the only parent ever to be glad for that) and she is profoundly normal. My husband crows about her averageness frequently. I find myself overly concerned with monitoring her development and ensuring she does things 'normally.' If anything varies from typical development I worry it is an early sign of something. 

Even with her development being entirely typical to this point, I find myself qualifying things. When my friends ask me what schools I plan to sent my kids to, I find myself saying things like "Well, if her linguistic development is normal I'll send her to..." I even did it at the start of this paragraph; "To this point." As if I am waiting for the other shoe to drop. 

I qualify everything, because I know now from personal experience that your plans can take unexpected directions. We weigh the thought of having another child against the odds of having another autistic child - perhaps one who is more severely affected. Parents who do not have a delayed child do not seem to consider these things the way we do. Planning for a hypothetical profoundly autistic child doesn't even register on their radar of "things to consider when planning future kids."

It is a continual struggle to ensure that while I rejoice in my daughter's normalcy and rapid development, I do not allow that to overcome the joy I feel at Mak's progress. His victories are hard-won and while they are slower coming, they are just as amazing to see. 

Drugging into Submission

At the end of March, we had an appointment with my son's pediatrician. Here in Canada, children do not see pediatricians for regular care, that is handled by family physicians. Pediatricians are for specialized things that the GP cannot handle.

So off we went to see Mak's beloved Dr. B. She is a curious woman, extremely intelligent and observant, who works with most of our region's autistic children.

I had, up to this point, believed as many parents do, that it is 'weak' to put your child on medication, that you just aren't disciplining effectively, and that drugging one's child into submission isn't the answer. I was firm in my opinion that I would never be one of those parents.

However, shortly before this appointment, Mak had a cold. Simple, everyday virus that ran it's course in a few days. As he was coming out of it, we noticed that during the period where he was almost-better-but-still-fuzzy that he was extremely well behaved. He listened to what we were telling him, he used the toilet on his own with no prompting, he would control his actions instead of doing whatever went through his head. It was amazing. He seemed to have his mental processing slowed down enough that he was able to control himself, and he was so happy at not being in time outs most of the day, as well as having dry pants.

That is when I realized that medicating him would not be drugging him into submission, I would be drugging him out of the storm of sensory input that he lives in.

So that day, we talked to his pediatrician about putting him on a medication to replicate that recovery period, to slow down his processing just enough that he could be reached. She prescribed Risperdal.

Within the week, I would have crawled over flaming glass shards to get that medication for my son.

He is controlling himself! I would see him go to hit someone or something, buy he would stay his hand without me saying anything. He would stay in time outs without throwing things or spitting on me! No more two hour screaming fits that damaged the walls. He stopped trying to kill his baby sister.

Within two weeks, he was potty trained. Two and a half years of trying to potty train him and we used every single tactic we could find, but nothing got through to him. He was still wearing pull ups every day and wouldn't use the toilet on his own - at four years old. Two weeks on this medication, and he was using the toilet consistently. He still has accidents occasionally and needs pull ups at night, but he is mostly potty trained at four and a half!

This medication gave him himself. He has the ability to control himself, and isn't as sensory driven. He can still be an absolute stinker at times, and knows how to push my buttons quite thoroughly. He is four, after all. But his misbehaviors are *typical* of four year olds, with few exceptions.

I will never again paint people who make such parenting choices with such a broad brush. I have my son, my wonderful son who is showing me just how wonderful he can be because he is able to control himself. Thank you, Dr. B for talking to me about it and leaving the decision up to us.

A bit on developments

My last post, which I dated for when I composed it, but just published here today, was a breaking point for our family.

February and March 2011 were the two hardest months I have experienced in many, many years. My daughter, who from here I will simply refer to as Di, was still tiny and defenseless, my son was completely out of control and I was suffering from postpartum depression to a degree I did not believe possible.

As I posted there, the psychologist had failed us, the experts had no idea what to do with him. I was told over and over that if things got bad, I could just take him to the ER. But there was no help to keep that from happening, no steps between "almost out of control" and "admitted to the only available psych ward." In our case, we do not have access to a pediatric psych ward, so he'd have been housed with adults with psychiatric illness. Not exactly ideal for a four year old.

I reached out for help for myself. Exhausted, frustrated, scared, and having regular panic attacks, I reached out for help to my family doctor. I explained how dangerous my son can be, and told him how I absolutely could not risk being incapacitated by a panic attack. My husband works nights, and is home during the day, so I would wake him if I needed him, which I was doing with increasing frequency.

He called CPS on me for, to quote the paperwork, "neglect and failure to provide appropriate supervision for a child." Instead of offering help or counseling, or medication, he set the authorities on me and for five very difficult days, I could not have unsupervised access to my own child.

The case was closed as unfounded, after the social workers had pried into every corner of my life and my son's condition. My son's team - psychologist, IBI tutor, speech therapist, occupational therapist, preschool autism specialist, and pediatrician - were all contacted, as well as my own therapist who was quite surprised to be hearing from them. As far as I am aware, every person told them roughly the same thing - that my son is exceptionally well taken care of, that he is quite violent at times, and that I am very good at managing his tendencies.

This experienced proved to me how difficult it is to get help as a parent of a violent autistic child. I could not speak to my family physician about my fears and mindset without being put through an intensely stressful process.

Now that the file has been closed for nearly six months, I feel comfortable talking about it. I think it is important to talk about it. So, this blog is my platform on which to do so. So I will.

Recently, I find myself thinking about Mak lot. He is my son, so of course he occupies a great deal of my energy and contemplation anyway, but he's really the focus of my thoughts most of the time these days.

I find myself thinking about his future. He is still too young to know with certainty where he will be in ten or twenty years. But instead of the contemplations on my child's future partners, education, employment, and so on, I am wondering if he will be able to live on his own and whether he'll be in community living, an institution, or jail. I've discussed with my financial planner whether we should set up a Registered Disability Savings Plan, or create a trust account for his ongoing care after we are gone.

Discussing that - and even thinking of it now - gives me a lump in my throat. Until recently, I have avoided referring to my son as disabled. Like most autistic children, he is an incredible mixture of abilities and delays. When he was first diagnosed, autism seemed something we could deal with. I could teach him to understand typical people and cope with this world that doesn't understand him. I still feel that way, but with a hearty helping of understanding that a lot of these struggles are simply not as easy to deal with as I'd initially hoped.

My son is violent. All children of his age are aggressive to some degree, but Mak is outright violent. He completely lacks empathy. It is disturbing, not just the first time but every time, when you see him hurt another being with a smile on his face. He often laughs about it. He does not have any concept of empathy because he lacks a theory of mind. Basically, he is not capable of understanding that others have thoughts and feelings. In his mind, if he thinks it is fun to kick the cat, the cat must think it is fun for him to kick her. It makes it uniquely frustrating to deal with him.

As he has gotten older, the violence has increased with his age. He's less prone to all out knockdown rages like he used to have, but he is overall much worse.

If he were a partner instead of my son, I'd have left long ago for all the abuse I've withstood. But he is my child, and I love him. I will not give up on him, ever. But as he's getting bigger, it is becoming more and more apparent that we have to prepare for other things. It's becoming clear that even with all the early intervention, it is possible he may never be able to live on his own. He will likely need ongoing support throughout his life. Acknowledging this, and talking to our financial planner about it, almost crushed me. It's easy when your kid is a toddler and a bit delayed. It's different when they are getting older and the gap is getting wider and wider by the day.

It's clear that we may end up, at some point, having to hospitalize him for his own good. The other day, I was very seriously considering taking him to the ER and asking for him to be admitted and medicated.

As difficult as it is to write about, he tried to kill his baby sister, which is what prompted me to consider taking him to the ER. With a smile on his angelic face, he told me "Strangle her, make her dead."

No one writes a book to tell you how to handle one of your children wanting to kill another.

For all the books about coping with autistic kids, this seems to be the dark side of autism that authors really seem to shy away from. I can find a million tips to teach him how to cope with sensory overload. I can find seamless socks, and ID bracelets, sensory fiddle toys, social story apps, and so on and so forth. But where can I get real help to deal with this kid? I don't want the 'ignore it and it will go away' bullshit I get from psychs - it doesn't work with him. I don't want this happy fluffy bunny 'my autistic kid shits rainbows and butterflies' crap that I read about on parenting websites.

I want information from the trenches, from other parents who really deal with this. I KNOW my son isn't the only kid like this. But all these organizations that 'support' autism shy away from the kids like mine. They present autistic kids as mysterious and misunderstood (fairly true) but overall harmless, which really isn't true of all kids. My four year old could probably break a grown man's arm if he got of a mind to do it. Harmless, he is not.

The reality of it is that there are many kids like my son, but there isn't enough information out there about how to deal with it. Tactics that work on typical kids do not work on him, and I expect other parents are in the same boat. This is the dark side of autism that no one writes about and I want to break the silence on it.

I want to talk about it here. So here I am, telling you. My son has a disability that is almost beyond my ability to deal with. He is violent and the thought of how much stronger he will be in a few years terrifies me. His psychologist has failed us. Specialists really have no idea what to do.

We're adrift, really, trying to figure out how to get through to this child. It's not easy. In fact, it's quite scary.

I love this child so much I would choose to die in place of him in the span of a heartbeat. That's why I am not ever going to give up on him, and until my dying day will make sure I have done everything possible to try to help him make the most of the life he can have, even if it kills me.

Mak & Mom

I often sit and admire the capriciousness of the universe.

Well, sit as much as I am able.

I have an extremely happy, joyful, wonderful, and energetic three year old son. He's my little Mak. In many ways, he is an exceptional child. He is both ahead of and behind the curve of what is considered 'typical' and thus has been diagnosed as autistic. I consider him to be a child with a different way of interacting with life - my little Mac in a PC world. I have no desire to cure him, just help him where he is delayed.

Often, we see small progress with him that just astounds us. For example, a few weeks ago, he tucked in his doll. He put her in a chair and tucked a blanket around her, then turned off the light because she was 'sleeping.' Such a thing was so far out of his normal behaviour that I sent pictures to his grandmother, and spent most of the day blathering on about it with my friends who had no idea why a child showing empathy was such a big deal.

On Monday, I discovered that I am pregnant with our second child, after a difficult and painful battle with infertility. My grandmother had passed away that morning, and I was just blown away with the incredible nature of what was happening - that with death, there would be new life - and so, of course, I burst into tears. Happy tears, sad tears. Just tears in general. He hugged me. He actually came up and hugged me without me prompting him. He saw I was crying and hugged me, and it was incredible that he thought to do that on his own.

My son is soon to start in quite a bit of therapy to help him with his delays. As my pregnancy progresses, and as his progress hopefully continues, I want to document the joys and difficulties in dealing with a child of my son's nature and how we help him adapt to being a brother.