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Coping After Your Child Receives a “Special Needs” Diagnosis

When you deliver a healthy baby, you automatically assume that he/she will develop normally. When that plan doesn't happen not only is it an unexpected shock, but it's also a scary and exhausting process.

 

Seventeen years ago I heard some words that changed the course of my life forever — “Based on these test results, your son has global developmental delays, possible autism.” 

In less than 30 seconds our entire family’s present and future world had abruptly changed course, and the once bright destination was now looming beneath a dark and stormy cloud. 

It felt as though someone had just punched me in the stomach and knocked the wind right out of me, and as I physically sat still to listen to the details, I felt like I was having an out-of-body experience. The clinical educator that delivered this devastating news to my husband and I was very abrasive and cool in her manner, making limited eye contact with us as she flipped through his 20-page test results. 

For what seemed an eternity, the only sounds to be heard were the tapping of her fancy pen against the dense clipboard that cradled those test results and the occasional sigh she would breathe in between her very matter of fact explanations of how the educational team arrived at this upsetting diagnosis.

I can still remember what she was wearing — an off-white crisp linen suit, designer chic, with a sleek, pulled back ponytail.  Me — in a black velour sweat suit, concerned mother couture, wearing a headband and unruly bangs. At the beginning of the appointment I would’ve guessed we were close in age.  By the end of the appointment, I had easily aged a good 10 years — all in less than 15 minutes.  

We received that blow late on a Friday afternoon. Did I mention it was Good Friday and Easter weekend was on tap?  Our festive and cheery holiday weekend was no more.  Instead of dyeing eggs and hiding chocolate bunnies I was drying my tear-drenched eyes and hiding in my bedroom. 

At that time we had four children under the ages of four, young enough that they didn’t question why mom spent the entire weekend sobbing in her favorite Winnie The Pooh bathrobe.  

Let me back up a bit, though, with an explanation of just how all this testing came to be.

Our oldest child, now 18, a daughter, sailed through her developmental milestones with flying colors — most were met early in fact.  Her speech, in particular, started when she was 9-months-old with simple words like “cheerio” and “bye-bye.”  By a year she had dozens of words and by 18 months was uttering simple sentences.  

Our second child, now 17, a boy, seemed to be meeting all of his as milestones as well, except for one small problem. He wasn’t talking — at all.

We raised our concerns at his 18-month check-up but were told not to worry, he was probably a late bloomer. In addition, he had had numerous ear infections from the time he was six months old, so that could be a factor. We were told to just monitor his progress. 

Relieved, we did just that.  A few months later he had tubes placed in his ears, and one of our problems was finally solved.  The expressive language, however, was still not progressing, and by age two he still didn’t have a single word in his vocabulary.  The ears continued to be a problem, even after the tubes were placed, so our focus was back to that and we assured ourselves that once he was finally pain free, the dam would open and the words would start to flow. 

Another six months came and went, still not a single vowel escaped him – it was time to take this to the next level. With that we scheduled his testing, a complicated series of diagnostic tests which are done over a period of two (very long) days. 

Unfortunately, our testing experience was quite unpleasant. Most 2 ½ year old language-delayed children do not thrive and perform to the best of their ability when they are thrust into a strange atmosphere with half a dozen or so unfamiliar adults asking them to complete even a simple task such as stacking blocks according to their color. 

Imagine trying to process a direction if it is given to you in a foreign language.  Frustrating doesn’t begin to describe it. 

Then, when the child is not able to complete the task satisfactorily and does exhibit signs of being aggravated, he is now labeled non-compliant as well.

Not only was our son tested, my husband and I were put through the grind ourselves.  We answered the same questions over and over again with each new person that conducted a new test and we were pretty much treated like a number, not like two educated individuals who were just trying to find a course of treatment to help their child.  Let’s just say it wasn’t warm and fuzzy and we were made to feel almost ashamed that our child had such a problem. 

So, after the two days of rigorous testing, the clinical educator, the well-dressed lady in the lovely linen suit, met with us on day three to review the “team’s” findings which they believed pointed towards autism.

That meeting lasted about 15 minutes, and we were given very little information, or hope, as to what to do next.  Basically, we were told when he turned three he would be eligible for special education services through our school department, but that was still about four months away.  Good luck, we were told, and if we were ever feeling burdened perhaps we should seek out a support group in our area. 

That brings us to Easter weekend, where instead of celebrating the holiday I chose to indulge in three full days of self-pity. At the time, I felt it was my only option, but come that Monday morning my husband, probably the most optimistic person I’ve ever known, intervened.  He asked me three questions. 

#1.  Why had I given up before we even got started? 

#2.  How is wallowing going to help our son? 

#3.  Who says they are right anyway?  

That was just the kick in the pants I needed.  I took a shower, donned my best cheerleader’s outfit, which is essential once you become your child’s biggest advocate, and sat down and made a list of every possible resource available. 

A few weeks and dozens of phone calls later, I connected with several sources that pointed us in the right direction to begin getting our son the help he needed.  This in itself was no easy feat, but after much persistence we did end up meeting the right therapists and were finally on the path to success. 

Now as we head into a new school year I look at my son and marvel at the non-stop talking teenager that he is today.  By age five he no longer had a diagnosis of global delays and certainly not autism. He has his license, does well in school, plays on high school sports teams and no one would ever know the obstacles he had to overcome.

That’s not to say we didn’t work long and hard all those years trying to get him back on track.  There were many days that we would crawl into bed at night exhausted from running around to therapy appointments, but mostly it was from the amount of energy we would expend as a family cheering him on each time he would learn new vocabulary and other age-appropriate skills.  Our enthusiasm and encouragement was a staple in his development, which I truly believe was even more important than all the speech therapy sessions combined.  

Often I am asked how I survived those trying years, especially when people learn that two more of our children later faced the same difficulties.  I can say in complete honesty that there were plenty of days I would question “why me?” but each new word and accomplishment made by any of my speech delayed children always gave me the answer —because they deserve the very best parent I can be, that’s why.

This article was originally published on Narragansett Patch on August 16, 2011.

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