Make no mistake, sometimes politics is personal. The best advocate a child can have is his or her own parent. I say “parent” because usually, even in two parent families, only one parent has the time to put into this time-consuming task. Of course, if a two-parent family, usually both parents attend meetings together. And, as I have said in the past, since parents need to be prepared to “rock the boat” when necessary, one parent may be better able to manage that process.
Now, what exactly is involved in being an advocate? Most advocacy associations have materials on this topic, such as this article by the Learning Disabilities Association of Canada. But, as a former private special education consultant, teacher and parent of a special needs child, in my opinion, the keys to successful advocacy are that you:
- Stay calm and collected even under stress;
- Stay focused even when you feel your judgment is being questioned;
- Politely refuse to be intimidated; and
- Know what you are talking about.
Now, items one to three are rather obvious but what about item four: know what you are talking about. Too often parents go into meetings with professionals in a victim stance, hoping “they” will be able to tell them what the problem or problems are. You know what? You, the parents know far more than any of those professionals. True, you don’t have test scores. But, you have observed your child from birth.
If you have other children, you know what is different. You know if the child in question sat up or crawled or walked when the other children did. You know their sleep patterns. You know how they react with noise. You know their mannerisms, such as if they flap or shake their hands when they get upset or excited. And, you know how they interact with their siblings or other people. That is the information you have to talk about BEFORE any formal meetings. Write down the milestones or lack of them. Go into meetings as the people who know your child best.
And, when you are told you are too emotionally involved to be objective, simply politely say: “Of course I am emotionally involved. I love my child. Since it is important that my child be loved, let’s remove the ’emotional involvement’ issue right now and look to solutions to help my child.” That is being assertive and an advocate.
I know something about that victim attitude because I went through it myself. When my son, Andy, was in Senior Kindergarten, the school board special education consultant actually said to me: “Perhaps you should send your son away to live with a relative since you can’t manage him.” It was at that point that I looked that consultant straight in the eye and said: “What an appalling thing to suggest. You can’t help him, so you blame me.” He then looked sheepish and we got down to business. The irony was that I ended up teaching in the same board and confronted him about that statement many years later. He apologized and admitted we didn’t know much in 1970. Don’t let it happen to you!
Now, in terms of advocacy, there are at least three possible scenarios. In the first, you know something is wrong from the moment the child is born. In that case, your advocacy started almost immediately, as is the case with any disorder on the autism spectrum. Now, one would assume that the symptoms would be obvious enough that all the correct referrals would be done between one year and three years old with a referral to an ABA (Applied Behaviour Analysis) program — also referred to as IBI (intensive behaviour intervention). But, as parents in Ontario have found out, you literally have to fight for what is best for your child.
A second scenario is when parents observe and watch their child struggle and perform and by Grade 1 or 2 decide to take the bull by the horns and get their child tested on their own. When I was in practice, I used to recommend that route because it was the fastest and most effective. To avoid conflict-of-interest charges, I used to refer them to another professional and then they would come back to me for further consultation. True, the testing can be expensive but many major medical plans cover the testing or parents can provide post-dated cheques. The bottom line is that once you have that formal report in hand, you can make an appointment with your child’s classroom teacher and the identification and placement process can begin. In this scenario, rather than waiting for a year or more for the same type of test results, you are (usually) seen as an informed parent. That is not to say, that school officials cannot react in a defensive manner but as your child’s advocate, just stay cool and move forward.
A third scenario is that a classroom teacher notices something that a parent hadn’t said anything about, a phenomenon that is more common that you would think. For example, when I was a classroom teacher in the junior grades (4-6) I frequently observed behaviour and a lack of progress and would make a referral to special services because I suspected something. What I also did was call in the parent for a parent-teacher interview and tell them what I suspected. Nine times out of ten the parents were aware of the same issues I was and were glad I had started the process. But, inevitably I would ask them why they hadn’t sought out help before when they had their own suspicions. Usually they were hoping the child would outgrow their developmental delays or unusual behaviours. The point is that if the parent had been the advocate, instead of me, the process could have started in Grade One rather than Grade Four.
Without a doubt, work with your family doctor and your child’s classroom teacher. But, if you don’t get results, don’t be afraid to “rock the boat” or take the lead. Arrange for private testing if you have to. It will be money well spent. And, once the identification process gets underway, the next hurdle will be proper placement. And, without a doubt, you will definitely need your newfound advocacy skills for that process.
Now, if educators read this piece and feel I am being unfair, consider the fact that mistakes happen — and far too often. Sometimes the right hand does not know what the left hand is doing or has done. For example, my son went from a primary SLD class to a junior SLD class. Then, when he was thirteen, we were advised that he was going into a regular Grade 7. That year nearly destroyed him. Since both my husband and I worked for the board we didn’t want to “rock the boat.” But, finally we had to. The special education consultant was referring to Andy as psychotic because he wouldn’t undress with the other boys in the gym change room. We said enough was enough and went to see the Superintendent of Special Education. He admitted that there had been an “error” as Andy had been scheduled to go into an intermediate SLD class and he didn’t know where the breakdown in the system had occurred.
Fortunately, good came out of that horrible error. The Superintendent bent over backwards to correct the situation and it was then that Andy was sent to a clinical residential situation for observtion and assessment — and the start of an intensive behavioural treatment program that made him the person he is today — friendly, verbal and social.
So, parents, don’t take anything for granted. You can be your child’s best advocate.