When we last got together we talked about different terms you might hear when you learn about Fragile X Syndrome. I wanted to throw some of those out there to set the stage for an update I am going to share. You always hear that you should not compare yourself to others, but it is human nature to want to compare things. We compare growth, milestones being met or missed, test scores, haircuts/colors, clothes, etc. We compare EVERYTHING! So, when we received Jackson’s diagnosis we tried to search for cases/stories of other children with Fragile X Syndrome to try and gauge what we should expect with him and his development. When could we expect him to talk, when could we expect him to walk, when could we expect him to show interest in potty training, basically, everything. I will tell you that in searching for this you really cannot find clear timeframes and one of the reasons is that all of these diagnoses differ. Some have Full Methylation, some have Partial Methylation, some also have a diagnosis of Autism, some have Mosaicism. So, it is very difficult to figure out what the future looks like.
So, what is the exciting news I wanted to share? Jackson, at 3 years and 7 months, has shown signs of interest in potty training!!! Not just interest, but he is actually using a big boy potty about once a day!! We are not forcing the issue and we will continue this approach, as we do not want to deter him from making such amazing progress. He will walk into the bathroom and just let us know he wants to try and goes! He is not far off from when his Neurotypical brother was potty trained, so this to us is just amazing. From what we could find in regards to Fragile X you should treat it the same as you would a typical developing child, but Children with FXS often exhibit a delayed ability to sense if their bladders or intestines are full and ready to void, but to me those statements almost contradict one another. Typical developing kiddos can sense those things a lot easier. So, we didn’t even think about potty training until one night Jackson got out of the tub and stared at the potty, then said potty.
“Do you need to go potty?”, I asked.
“Yes!”, he replied.
He then proceeded to stand and go potty!!! When he was done he flushed the potty, waved and told the pee bye. After we washed his hands and we celebrated this amazing moment, I then got on my phone and emailed both of his schools/therapists to let them know what had just happened, so they could be prepared if he tried while in their care. I also made sure to tell them we are by no means forcing this on him, which they acknowledge and then shared in our excitement!
So, if you are raising a child with delays, here is my advice: IT IS OK to search for answers on when you might expect things to happen, not only is it human nature to be curious or compare, but in your search it helps you plan and prepare. IT IS OK to celebrate any and all milestones, even if it is your child using the potty once and not progressing, because them showing interest is progress…it will happen in time, IT IS OK to feel any and all the emotions you feel daily. IT IS OK to ask your doctor questions about all these milestones and things. If they can’t give you answers I highly recommend using social media as a platform. Google will show you lots of research articles, studies and medical guides, but I have found so many amazing Fragile X organizations and families that have become my family and I have found so much support and they are always so uplifting. There is something to be said for having a real person to connect and share your experiences with. This is also a reason why we created this blog. We wanted to share our journey from the good, the bad, the real and the raw in hopes that maybe this can help other families.
Lastly, I wanted to share some news that most of you might know, but if you are new to following our story you might not know that as of May 1st, I was appointed to the Board of Directors for the Fragile X Resource Center of Missouri as their Vice President. So, if at any time you have questions or are looking for resources whether local or not, I encourage you to reach out and I will do my best to assist you, support you and lift you up!
XOXO
Our Fragile Xperience 