Brooke was diagnosed with Pervasive Developmental Disorder - Not Otherwise Specified, or PDD-NOS, for short. It is a condition on the autism spectrum that has those with it exhibiting some, but not all, of the symptoms associated with classic autism. This can include difficulty socializing with others, repetitive behaviors, and heightened sensitivities to certain stimuli.  Just before she turned 4 years old. I started noticing that there was something off about Brooke before she was even 1 but at that age we just thought she would grow out of these things. Around the age of 2 was when I really started to worry. She wasn’t acting like other kids her age. She wasn’t talking much except for copying words and phrases that she heard all the time from us. She wasn’t communicating her needs and she wasn’t playing the same as other kids or taking an interest in playing with other kids.

Now, here is a first hand account from my sister-in-law Dawn about her and my brother Steve’s experience with Brooke, my niece – from before her diagnosis of Autism to the present.

Brooke was diagnosed with Pervasive Developmental Disorder - Not Otherwise Specified, or PDD-NOS, for short. It is a condition on the autism spectrum that has those with it exhibiting some, but not all, of the symptoms associated with classic autism. This can include difficulty socializing with others, repetitive behaviors, and heightened sensitivities to certain stimuli.  Just before she turned 4 years old. I started noticing that there was something off about Brooke before she was even 1 but at that age we just thought she would grow out of these things. Around the age of 2 was when I really started to worry. She wasn’t acting like other kids her age. She wasn’t talking much except for copying words and phrases that she heard all the time from us. She wasn’t communicating her needs and she wasn’t playing the same as other kids or taking an interest in playing with other kids. Over the course of that year, I went to the doctor 3 times and told him I had concerns. He just told me she would catch up and that all kids develop differently. I trusted him for awhile but eventually found someone else to help me. I searched the phone book and found the Early Childhood Intervention Program in Regina and got set up with this program. They pointed me in the right direction. I went back to my doctor and told him that I wanted a referral to the Wascana Rehabilitation Children’s Program in Regina and that is when she finally received her diagnosis.

It was a relief to finally get the answers we were looking for, but at the same time we felt very overwhelmed. We did not know a lot about Autism so we tried very hard to read everything we could and learn as much as possible about this disorder. We really didn’t know where to begin, but fortunately we had enrolled Brooke into a preschool program with a teacher who really did wonders helping our little girl. At this time there was a lot of guilt for me, especially as I started to think that it was my fault she was like this. I started to think maybe I did something wrong while I was pregnant with her – but really I followed all the rules. Didn’t take any medications, didn’t drink, and didn’t smoke. I did everything I could so why was this happening to our little girl. I did more reading and realized that there is no known cause for Autism and it doesn’t discriminate. All races and both males and females can be affected. I was driving myself nuts trying to figure it out. After this stage was kind of a mourning stage for me. Realizing that all the hopes and dreams I had for my little girl may never be there. She may never be able to drive a car, she may never have friends, she may never graduate as a typical Grade 12 student, she may never go to University, she may never get married nor have kids of her own. This took a lot out of me. I cried a lot about this but eventually that faded away and I started to just think in the present. We then faced a lot of loneliness and isolation. We really didn’t go out much because at that time Brooke would get very upset and was prone to extreme outbursts. She just wasn’t able to deal with the world around her. We didn’t go out to restaurants, we didn’t go shopping, and we didn’t go to friends houses. I think the hardest part about having a child with Autism for us has been that other people just don’t get it – and I am not just talking about strangers. Friends and family included. We have heard so many times that if we would just discipline her more or if she wasn’t so spoiled she wouldn’t act like that. Well it hurts when you hear that over and over again. I don’t think anyone truly gets it until they actually live in the situation.

Brooke is now 10 years old and we are now able to go out and enjoy the company of our friends and family with some limitations. As we grew so did they but there are still times when we hear different hurtful things, but we are at a point in our life where we can shrug them off more easily.

School was also a struggle for Brooke because at first she was placed in a program with both special education and regular classroom settings but she just did not function well in it. She had too many sensory issues and would get thrown off by the other children. She is now in a regular classroom with a modified program and full-time teacher’s aide. This is the perfect fit for her. She has been doing this same program for 3 years and it has been very successful for her. She has made incredible growth in the last 3 years. She is reading, writing, and doing basic math skills. She is at a lower level than the other kids in her class but she is learning everyday.

Brooke is not able to ride a bike, she is not able to go for a walk outside on her own, she can not swim, she has never had a friend come over to play at our house, she has never been on a sleepover, and she has never been to a friend’s birthday party. These are all things that typical 10 year old children have done tons of time. Things that many of us take for granted but Brooke doesn’t even know she is missing them. It is us as her parents that often feel the regret for her. There are times when we wish things could be different for her and we struggle everyday with what life will hold for Brooke but we are optimistic. We just want her to be happy and so far she is. She has a wonderful sense of humor and a personality that everyone remembers. We often find ourselves wishing we were more like her. She doesn’t care what others think of her. She lives life in the now. She doesn’t stress about the future. We learn from her everyday of our lives and that is what keeps us going. She is beautiful and inspiring and we are so proud to have her as a daughter.

Thank you Dawn and Steve for sharing your story. I am also proud to have Brooke as my niece, and you two and Noah, my nephew/Godson as my family. Brooke was one of the many faces of Autism that was featured in The Globe & Mail this past week. If you want to check that out, click here for the link to it.

Some background info on Autism:

Autism is a neurological disorder that affects the way the brain processes information. This in turn affects the development and behavior of people who have autism. All children and adults with Autism Spectrum disorders are affected in the areas of verbal and non-verbal communication, social skills and relationships, and behavior, interests and activities. Despite sharing these three identifiable challenges, autism is called a Spectrum Disorder because there is a wide range of symptoms that people with autism may display, as well as a range in the degree to which the symptoms affect their lives.

Pervasive Development Disorder Not Otherwise Specified (abbreviated as PDD-NOS) is characterized by severe and pervasive impairment in some areas such as reciprocal social interaction, or restricted activities and interests but the strict criteria for autistic disorder are not met.

For more information on Autism, visit AutismSpeaks.org and to find out more information about World Autism Awareness Day, click here.