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The Five Stages of Loss

The 5 Stages of Grief (or Loss)
Denial (this isn't happening to me!)
Anger (why is this happening to me?)
Bargaining (I promise I'll be a better person if...)
Depression (I don't care anymore)
Acceptance (I'm ready for whatever comes)

When a child is diagnosed with a disability, the parents often go through a similar process to that of grieving – also know as The Five Stages of Loss (or Grief). There is a lot of variation in how the process is experienced: some experience every single stage, some don’t; some stages may last years, other may last only a day or two. It’s really different from one individual to the other.

Learning that your child is “not what you thought s/he is” is more difficult than it seems from the outside. You have to say goodbye not only to the dreams (and unfortunately also expectations) for your child’s future, but also let go of all that you thought they were until this point. Their behaviours all of a sudden bare a different explanation. You think you understood and knew your child, and all of a sudden you don’t.

It’s interesting to note, that once your child grows up, and gains enough conscious to understand that they are different – they in fact will go through a similar process. I can’t speak about the process from this point of view, but you can read stories like that, for instance this story I found on the internet from the point of view of a young lady who has a learning disability, and also this article that talks about the process of accepting one's diability.

I would like to share with you the process I went through with my daughter diagnosis, from a young mother’s point of view.

Through her first two years, Tamya seemed to develop like all typical babies do. For the most part. She seemed to be a happy baby, and for the most part followed the main developmental milestones and reached most of the main ones at the average age: she smiled at 6 weeks, turned fron side to side around 3 months, was sitting at 6 months, crawling at 8 months, and learned how to walk when she was one year old. The things that were a bit unusual were very subtle, and could be only discovered in retrospect, knowing that indeed she did have autism: lack of interest in toys in general, fear of furry animals, grinding teeth, and certain vaguely autistic responses to social cues (i.e.: she did not wave goodbye). At the age of 18 months and on, Tamya was curiously walking the opposite direction when we were going on walks, or would walk at least 10 meters ahead of us (unawareness of danger), and was also extremely fascinated by chasing her shadow and going up and down stairs.

At 18 months some of our family members started to express concern for Tamya’s development. She went through elaborate medical examination to see if anything is missing in her diet, etc. We kept thinking that she is fine, as for the most part she seems to be developing normally, and she was also very communicative (thanks to the tremendously expressive saucer-size eyes she’s got). Her attentive and intelligent observation completely fooled us to think that she is probably going to start talking like nothing has happened any day now. This seemed to make sense, because the way she learned how to walk was very slow and cautious. She never fell: when she sensed loss of balance, she gradually lowered her bottom and sat down, until she perfected her walking skills.

The shit has finally hit the fan when she started daycare at the age of three. It wasn’t so much the language that alarmed and worried her teacher, it was more her perseveration and her unawareness of danger. Tamya spent her first month in daycare opening and closing drawers, flicking lights, playing with the curtains, and trying to find the exists through which she can escape daycare and be left alone without those demanding adults!

After about a month in daycare, her teacher couldn’t keep her worries to herself, and she just told us, bluntly and courageously, that she is really worried, and from her experience from another child she educated – she thinks that Tamya had autism. You can imagine my rage: “how dare she think that MY child, who has the most intensely expressive EYE CONTACT could POSSIBLY have AUTISM???!!!”. But it only took about two more weeks to get over that outrageous anger as well as mistrust (after all, who is that teacher anyways? She is not a doctor, she is not en expert, she doen’st have the right to diagnose my child!!!”).

Than the worries and the fears started sinking in real fast. Is our daughter going to keep wearing diapers for the rest of her life? Is she going to ever talk? Is she going to have a good life? Do we still love her the same way? It was an emotional roller-coaster, that we couldn’t handle for too long…

Two weeks later, we woke up at 6 in the morning for an emergency meeting with a child and family psychiatrist who happened to speak my native tongue and also have the talent to calm people down and give them reasonable and logical solutions in the most stressful situations.

However, a few more weeks later, Tamya’s biological father (than my husband) took off and went back to Israel, and I became a single mother to a child that had no diagnosis yet. So I had to go through the process of grieving in two parallel avenues – the one related to the loss of the relationship, and the other to the loss of who I thought my daughter was until now. The reason I am telling you this is not so that you think that I am such a courageous and strong woman (usually the response I get from people when they hear my story). I am telling you this because it is very common that families break when a child in the family is diagnosed with a disability. The stress, fear, worries and tension it adds to relationships is enormous, as if raising children and maintaining a relationship isn’t challenging enough as it is. It’s a real test for the strength of a relationship, and parents should get all the support they can get and need in order to keep their family intact and attend to their own personal needs and maintain a certain level of sanity.

From this point on, for about at least a year if not two, I lived constantly in the two stages of both extreme depression and worry on one side, and a constant bargaining with the systems – so that my daughter would get all the support she is entitled to – the community health nurse got involved, came for home visits and gave me tips for increasing language and managing behaviours, an occupation therapist came on board almost instantly after than, we got assessed for speech therapy right away as well, and by May, we started receiving weekly speech therapy sessions through the Centre for Ability.

As you see, I spent very little time in the other phases. I really didn’t have much time. I am a practical woman (especially when it comes to taking care of my loved ones), and so within two months after the “breaking news” from the daycare teacher, I had almost all the services available lined up for my daughter, and she was on the shortest waiting lists all the time. I just wouldn’t have let her postpone her “getting better” anymore than I did when I was denying her condition before. There was a huge element of guilt there too. I should perhaps add GUILT as a stage in the process, as it is experienced by most parents to children with special needs. You always feel that you should have done better, if you only didn’t or did do this, or that, your child would have been better off now… It’s a frustrating, disharmonic feeling that can either freeze and paralyze to depression and numbness, or it can make you push yourself and everybody else harder and achieve results. I tried to do the latter.

It wasn’t until Tamya was four that she was officially diagnosed with autism in Sunny Hill (a division of BC’s one and only Children’s Hospital). This was after she got ear tubes installed, and hearing impairment was ruled out as a factor in her language delay. At that point, I was prepared for the worst. I already knew she has some form of Autism, because she was informally diagnosed in a hospital in Israel a few months earlier in the winter (due to grandparent’s request, they couldn’t wait to have the diagnosis, where I ddin’t really care what she has as long as it’s getting treated!). Tamya got pretty much the worst diagnosis they could have possibly come up with, which none of her educators could agree with – severe autism, apraxia and a moderate cognitive delay. While we all knew she has autism (high functioning) and apraxia (dyslexia in speech and challenges in sequencing) cognitive impairment was out of the question. That girl is simply too cunning and intelligent for that. But labeling helps, apparently, in getting funding for therapy and help in the school system. As long as you see your child as a child and not as a walking example from the DSM-IV, and give them all the love they deserve multiplied by 100, labels can’t harm. In fact they prove to be effective sometimes when you need to explain why your child is saying the same thing over and over or throwing unexplained tantrums in public…

I think I have pretty much reached the stage of acceptance. I don’t feel guilty about denying my cild’s condition for the first suspicious year and a half, and my child is happy and gets what she needs to be healthy and reach her potential. I may need to go through similar phases when she grows up (as disabilities are a lot more apparent once a child grows up) and becomes a teen and than an adult. And even more difficult – when she becomes aware of her condition and goes through the grieving process herself. But I feel I am strong enough to accept what my fate has put on me and I woulnd’t exchange my child for a “normal” child for anything in the world. I can’t imagine my life would be nearly as wonderful as they are without her and without her charming yet sometimes frustrating autism.
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