When they are not perfect

I recently received a panicked text from a good friend of mine. Her son had just been “maybe” diagnosed with Asperger’s. My friend didn’t understand why she was so upset. She had long suspected something was off (?) with her son. He was certainly different in social situations than her other children. (One of whom is a diva extraordinaire) She had questioned doctors before and always been told “no”. But she kept asking because in her heart she worried.

When she got the report she knew what it could contain. So why was she breaking in the supermarket parking lot?

My response: You were just told in black and white that your little boy isn’t perfect.

Now before everyone gets up in arms I am NOT saying that there is anything “wrong” with her son. I am not saying that having (or maybe having) autism means you are not perfect. In all honesty, every parent has a notion of what their child is and will be.

We never think they will have a disability, a syndrome or a diagnosis. They will be a princess, a prince, a cheerleader, a musician or the President of the United States. 

When you first get that diagnosis it hurts. It hurts worse than any pain you can imagine, other than physically losing a child. There is a grieving process and you (she) have to allow yourself to go through it. 

Then you get your big girl warrior panties on and figure out what needs to be done.

I believe that I had it easier than most. At birth I knew there was something wrong (for lack of a better word) with Boo. I knew immediately there were health issues. Serious ones, that became non-serious. By three months I knew she was not developing correctly. I was better prepared that my child had a disability. I knew that Boo would be intellectually disabled long before the doctor broke the news to us. That she has come so far has been a miracle to me.

Yet still the autism diagnosis threw me for a loop. My defense at the time was that I had been told multiple times that Boo had something but it was not autism. Then it was. And it was okay. It was okay to struggle, to cry and to wonder what now?

My friend’s son has not been officially diagnosed. He might have Asperger’s or he might not. More testing is needed, should she decide they need a definitive answer. Either way, I said to her, you were just told in black and white your little boy isn’t perfect. 

Except he is, perfection just has a different definition now

11 thoughts on “When they are not perfect

  1. Janine Huldie

    Aww, that last line summed up beautifully and can't even imagine though. Thank you for always being so upfront and open about Boo and your feelings and thoughts, too. And no matter what faults our kids have, still they always our perfect in our own eyes and couldn't agree more on that.


  2. Kerri Ames

    Thank you, Janine. Sometimes I am too upfront about Boo 🙂 But I'm glad I am when a friend knows that because I am upfront I will understand what they are going through and that they are not alone.


  3. Stacey Nicole

    This is spot on. We knew Thomas' speech wasn't right at two years old, despite being told by a doctor that he was lazy in his speech. Two years later, we learned that he was speech delayed, had articulation issues, frontal tongue thrust, and now possibly Apraxia. We knew when he was three that his quirks weren't totally age related, but it wasn't until a little over a year later that we learned he had sensory processing disorder. I know it isn't Autism or on the spectrum (and honestly, I expected him to be somewhere on the spectrum, even if it were PDD-NOS, when we went for a fuller evaluation last year), but it was hard to read all the paperwork related to our kid. I cried when I re-read everything in preparation to sending copies to his school. I cried when I told others of his initial diagnosis. I cried when I had a sit-down with the principal and his kindergarten teacher last year to discuss this year. Thomas is an amazing wonderful kid that is perfect despite all his quirks (in fact, I think they make him extra special in a good way), but yes, it's hard reading that your child isn't perfect. We do in two days to have our almost four year old go through the same battery of tests/evaluation that Thomas went through last year. His quirks aren't as pronounced as Thomas', but Isaac certainly has issues going on (he has had food aversion/textural issues since nine months old) so I am both anxious and nervous to find out what the experts have to say about him. :\


  4. ettinacat

    Actually, a few parents hope for a disability. Deaf parents often dream of having a child who is Deaf like them – I’ve even heard of parents who grieved when first they saw their child reacting to sounds (one mother like this is quoted in the book Mother Father Deaf). Personally, I’m an autistic woman who is hoping to have a child, and when I picture my ideal child, I picture a high functioning autistic child.



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