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.