Thank you so much to each and every person that has donated to the Costello Syndrome Family Network on Ali’s behalf. We appreciate it more than you could know. The CSFN has truly changed our lives and they provide connections with other families and doctors that are incredibly valuable to us. These connections help to ensure that Ali stays healthy and happy. Having a child with a rare, life limiting syndrome is really hard and having a support group to go to with questions is so important to families like ours!
Ali’s first year of preschool is coming to an end and with that, I thought I’d update everyone on her progress. She’s had a great year at school and she is doing so well! The teachers and staff at her preschool love her and in return she loves them! Wednesday will be Ali’s last day of preschool this year but she’ll be returning for another year in September and she lucked out, she gets to go to her school for two months this summer! She’ll be participating in the summer program for children with special needs and will be going to school 4 days a week for 90 minutes per day.
So with preschool testing complete, we now know how Ali is doing on paper! She has enormous strengths and enormous weaknesses. There are going to be some pretty substantial mountains to climb to get her ready for kindergarten but luckily she already has some valuable tools to help her along the way. Please keep in mind that all these scores have the potential to be affected negatively by her vision.
Her gross motor/fine motor testing was okay. She was tested by her occupational therapist last week and she actually scored higher than I expected but we’ve still got some work ahead of us! She has come a very long way since she was tested at this time last year and considering she’s only been walking since December, she did great! It bugged me that she lost points for not stacking blocks so I taught her this weekend. She also couldn’t string beads so I taught her that too. Sometimes with the testing, it’s just a matter of practice. So, I think part of her low scores was that I hadn’t thought to teach her these things. These are things that typical children just do, they figure them out themselves or it only takes a few minutes to teach them. Ali needs lots of repetition to learn and just when you think she’s got it, it’s gone! But with a little effort she can do whatever she sets her mind to (and for the record, I feel better that she did it!). During her testing, she demonstrated how well she walks backwards which surprised me and she kicked a ball like nobody’s business. I also realized that I should let her throw a ball in the house because that was on the test and I always say, “No throwing!!!”. I think she did really well considering everything that she has working against her but we definitely have some ground to make up!
We’ve also done her speech testing. This is where we found her enormous weakness and her biggest strength! Ali scored in the first percentile for “Expressive Language”, so in other words, she has the absolute most severe “Expressive Language Delay” that anyone could have! She has over 20 signs and she gestures and makes sounds and she’s great at telling us what she wants but still, she has some major work to do in that area as she scored at about an 18 month level. I think this delay goes along with her oral issues and is closely related to the lack of coordination that requires her to feed by G-tube. Again, she’s making a huge amount of progress both in oral communication and in feeding, we have no complaints but her issues are so severe in this area that it takes a long time! She’ll get there, this child will eat and she will speak but she’ll have to work for it because at this point it really couldn’t be much worse.
Now, let’s talk about her “Receptive Language”. Ali scored in the 63rd percentile in this area. What this means is that in a group of her peers, aged 3-4, only 37 would score better than her. During this test, Ali demonstrated an understanding of vocabulary items including clothes, body parts, nouns and action words. She followed instructions without gestural support, she understood pronouns (so my, your, me), identified colours and matched items. So, I know that it is probably hard for people to believe that this little girl who doesn’t speak and often has trouble following through on certain types of instructions understands them but she does. She takes in the information, processes it and understands what is needed like any other three year old but often can’t do it because of motor skills, expressive language skills and vision. She also has a short attention span so by the time she’s got her motor planning in order to get a task accomplished, she’s often lost interest. My hope is that people won’t doubt how much she understands because she could end up getting upset or frustrated because people assume that she won’t know what’s going on when she does. I hope that she’s given credit where it’s due and it’s due in this area! When you have a child with the number of delays that Ali has, having her test in the normal range for anything, even just one thing is the most incredible feeling. We knew she understood lots and assumed that she was close to normal in this area anyways but to be right smack in that normal range is amazing and her score was high enough that it leaves no doubt. She is normal here.
We’ve recently had our yearly cardiology appointment and her heart has remained stable. We saw the Pediatrician last week and he was thrilled with her progress as were the vision therapists at the CNIB when we went there recently. Next on our agenda is the Physical Medicine Clinic, a feeding team check up and a cancer screening in the middle of June. We are also concerned that her G-tube needs to be moved because she’s grown a lot since it was placed and her Pediatrician agrees with us so there may be a surgery on the horizon.
For us, it’s all about progress. She’s learning and developing. Ali is following the curves and learning things in the right order, she just does it at her own pace. As long as the progress doesn’t stop then we’ll remain incredibly thrilled with what she’s accomplished. She’s an incredible little girl and she brings such joy to everyone around her! We love that little girl to the moon and back!
