9 Years ago I worked with a wonderful woman who has 4 amazing children. When she was first introducing them to me, she said that she called one of them her "sparkle child", because she was her own, unique, individual and just brought "sparkle" everywhere around her. I thought it was super cute...she was special and different within her family and her mom chose to see it as sparkle. Beautiful, not just different.
Not too long after I met this great lady and her family, I gave birth to my 2nd child...a beautiful, brown-haired little girl. We named her Breanna. She was a sweet little thing, that didn't sleep super well, but ate really good. She had a sweet smile and made our hearts melt. She was such a joy in our lives!
As she got bigger we noticed that she would tilt her head to one side, a lot...so we were told to lay her down and stretch it to the other side. She didn't sit up by herself until after 9 months old. She giggled and laughed, but didn't speak much. She didn't walk until 15 months. Everything seemed to be happening just a little "late". She finally did find her words and began using words, but not age appropriately. By age 2- 2 1/2 she wasn't speaking as she should, so our pediatrician recommended getting her ears checked. We took her to the local hospital and had her ears tested, just to find out there was no problem. For that we were grateful. We figured she was just "taking her sweet time" with talking...just as she had done with everything else in her development thus far.
My sister-in-law had many opportunities to see and inter-act with children with different ranges of disabilities. One of which included autism. I went to her home one day to pick up my 2 kiddos, who she was babysitting for the afternoon. She basically asked me if I thought anything about some of my daughter's habits. She recognized some of them as some of the same "habits" as some of the autistic children she knew. Knowing that Breanna was slow in some of her development, she just wondered if we should find out a little bit more. At first I thought, "No way. She's crazy. She doesn't really know what she's talking about." Then I watched my daughter a little more.
Breanna was getting close to the age of 3 years old, and was still not communicating well. She screamed out of frustration, because we could not understand what she was trying to say. She didn't have huge, kicking/yelling all-out fits often, but she did get very upset, and cry. She had a really, really hard time reasoning. We'd try to explain something to her, and she did not want to hear it. She would scream and cry, when things did not happen as she felt they should. She would cry and scream at indoor swimming pools. She was extremely scared of loud noises, running as fast as she could to us when a jet flew over our home, and burying her head into our chests every time she heard or saw a firework. She was not having success in potty training, she was still sucking her thumb, and she was not sleeping well at night. While her big brother was at preschool, she would just lay on the couch with her blanket, or lay down to watch t.v. She was not engaging in imaginary play, or playing with any of her toys. When she got hurt, she would cry and scream, yet almost refuse to be held or consoled. She liked to tippy-toe around the room and had a hard time keeping her focus on things for certain amounts of time. She loved to be outside, especially jumping on the trampoline and swinging in the swing. She would scream in excitement. I finally decided to bring my concerns to my pediatrician again. He suggested sending her to our local school district to have her tested, and see if she could get in to the Head Start program for speech therapy. So, that's what we did.
She was tested for speech, as there was a very apparent need for help there. I voiced my thoughts to the Special Education Specialist that was testing Breanna, about my sister-in-law's suspicions of autism. She asked if we wanted her tested, and I agreed. I was given a number of questionnaires to fill out and Brea was tested for Autism. Her test scores came back 3 points away from being "diagnosed" as Autistic. I didn't think she really had autism, but the test had shown us that she does have Autistic tendencies. So--Autism was out. She was, however, able to receive speech services through their program and she began preschool just after turning 3 years old.
At this same time, I had a friend who's son had been diagnosed with Aspergers. We had talked much about the similarities of our children's behaviors. She told me the psychologist that she went to, that diagnosed her son. She thought that maybe it would be helpful for me to take Breanna to him. So, I decided to go ahead and see what he could tell us. Breanna visited with the Dr., he watched her play, and he talked with me. At the end of the appointment he just looked me and basically said that she definitely did not have Aspergers, but there may be something else that was not in his line of expertise. Possibly something genetic. But, this time--Asperger's was a NO.
She'd had tests and evaluations done, so we figured, she was once again..."taking her sweet time" doing things. Kind of a lazy personality we thought. She continued on in the pre-school and ended up in the school district's Functional Skills preschool, receiving services for speech, and some of her behavioral issues. She was doing well, but we could still see her struggles.
As I mentioned before, Breanna is a really good eater. And because of that she is heavier than our other children...who are quite picky. ;) Once she reached 5 years old she started passing up her older brother in weight. I noticed that her fingers were still pudgy, like a toddler's. I started researching things on-line, looking at everything that had her "symptoms". I found a few genetic disorders and/or syndromes, that I thought it could be and thought maybe we should head in that direction. I discussed things with our pediatrician and we set up an appointment to visit with a geneticist at a local University and had him evaluate her to see if any of my thoughts would be validated. After his evaluations and questions, the doctor --again-- told me, she does have some of the symptoms of these disorders/syndromes, but he would not diagnose her with any of them. The symptoms just weren't severe enough, or there was not enough of them. Shot down...again.
Back with my pediatrician, we then wondered if her weight gain might be caused by a thyroid problem. So, we had her blood drawn for testing. The results came back negative...nothing wrong with her thyroid. After that result, my pediatrician suggested we send Breanna to a Pediatric Developmental Specialist and not worry about her weight. Just focus on diet and exercise.
We went to her first appointment with the Developmental Specialist, and to be honest, she didn't really tell me anything new. There was nothing brought to light that we didn't already know. The best information she gave us, was to keep her working hard in her school's resource program, on her IEP, and ask the school district to re-do some testing. She suggested this, because the first tests were now about 3 years old, as Breanna was now 6 years of age.
Along with her weight, Breanna's speech was still a problem. She could say words, minus a few sounds, but had a hard time putting them into sentences and communicating in that way. People who didn't know her had a hard time understanding her and could not have good conversations with her. She could not write her name. She had learned how to write the letter 'B' pretty well, thanks to her preschool work, but could only trace the rest of the letters when given to her. She had a really hard time holding on to the pencil correctly, and keeping it under control. She couldn't cut paper. It was extremely hard for her to make the scissors work. Anything that had to do with fine motor skills, was a frustrating task for Breanna to accomplish. Even getting dressed was a struggle. She cried and screamed every time we brushed her hair, or got the slightest little scratch. We'd come to discover her senses are on overload. She was still having problems with going to the bathroom, having accidents at school at least 2 times a week. We were absolutely frustrated. She was supposedly only just behind in the things she was supposed to be doing as a 6 year old. Yet, she had so many other things that were going on in her world that we just couldn't piece together. We could not understand why she was acting the way she was, and doing the things she was doing. And as much as we tried, we couldn't help her. Nothing we did helped her. She didn't seem to be improving much with anything that we, or her teachers, were doing. On the positive side, her memory was amazing! Not the short term so
much, but her memory of things that our family had done, trips we'd
taken, holidays we'd celebrated, visits to grandparents' homes; things
that were special to her, she could remember almost every detail. And her teacher told us that she was a fabulous rule-keeper at school, and made sure that her fellow classmates were doing what they were supposed to be doing as well. She was also showing great compassion to those around her, friends and strangers. If someone was sad, she was asking them why. If someone was hurt, she wanted to help them feel better. And don't get me wrong...we have many happy memories of Breanna. She gets the giggles and it is so cute and catchy, she gives fabulous big hugs, and she loves to help take care of her younger siblings.
Through her testing with the school district, the only thing they could feel appropriate to put on her IEP was Developmental Delay. Unfortunately we knew that she could only keep that "categorization" until the age of 8. For some reason, I was not o.k. with Developmental Delay. I wanted answers. I wanted a diagnosis so I knew exactly what was "wrong" with my daughter and so I could have a better idea of how to help her.
My daughter is now 8 years old. She has good days, and some very bad days. We did have her testing re-done last fall, but again...scores were just below what was needed to give her an actual diagnosis. She still does not have a "diagnosis" of anything, and has now been changed on her IEP to Intellectually Delayed. I am still frustrated by this, but I'm beginning to understand that I don't necessarily need a diagnosis, to help her in every way I can. I'm learning that no matter what her behavior, I just need to keep myself under control, so I can help her get under control. I recently listened to a presentation from a specialist that works with children with Autism and ADHD. Something he said hit me hard...He basically said to stop looking for what is "wrong" with our children with disabilities, and look for those things that are RIGHT. I want to keep the positivity about my daughter's situation. I want to
recognize what she CAN do, instead of constantly focusing on what she
can't.
So, finally I come to the purpose of this blog. My husband and I have felt like we were the only ones who have this kind of a struggle in our life. It felt like no one really understood what we have been going through for the last 5 years or so. Then, he met someone who, after talking with him, said that his family had a very similar situation in their life. Their son had problems and struggles, but has not been diagnosed with anything. I realized that we are NOT alone in our experiences. There might only be a few out there, but others know how we feel. I figured that this blog, may not only be a release of sorts, for me, but also, might help someone else out there know that they are not alone.
My daughter is beautiful...my daughter is amazing...she can be loud, and explosive. She can sometimes "go off" when she's not supposed to, but I know that her beauty and awesomeness is better than just the noise. She doesn't just 'sparkle'...my little girl is just like a firework. (And who doesn't love fireworks!)
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