A Forum For Those Touched By Pallister-Killian Syndrome

Jaden Bishop Rodriguez

Crystal 30, Female Haverstraw, United States: 1mvgf04k41n7b; Share

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Sally-Anne Wilkinson left a comment for Crystal May 29

Crystal left a comment for Sally-Anne Wilkinson May 27

Crystal left a comment for Sally-Anne Wilkinson Apr 23

Sally-Anne Wilkinson left a comment for Crystal Apr 23

Crystal left a comment for Sally-Anne Wilkinson Apr 23

Sally-Anne Wilkinson left a comment for Crystal Apr 23

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What is your child's name?: Jaden Bishop Rodriguez

How old is he or she?: He will be 6 yrs. old on April 22nd

At what age was your child diagnosed with PKS?: September 23, 2002

How long ago was the diagnosis?: I found out when he was 5 months old

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At 3:21pm on May 29th, 2008, Sally-Anne Wilkinson said…: PS. I hope we still have a nice time if the weather isn't good!!!!!

At 3:20pm on May 29th, 2008, Sally-Anne Wilkinson said…: Hi Crystal! Thanks for remembering Lucy's birthday - she was very excited about being six. We were in Portugal for our family holiday, so we didn't get chance to celebrate, but will be having a party for our friends and their children on Sunday. If the weather is good, we should have a nice time.

How are you and Jaden getting along? Hope that you are both well!

Take care
Sally x

At 1:58pm on April 23rd, 2008, Sally-Anne Wilkinson said…: Happy birthday Jaden! Did he have a nice day? Six years old - doesn't time fly - I can't believe Lucy is nearly six!

With the 'delete comment' - did you type on your own page and then cut and paste it? I've done that trick so many times and it always says 'delete comment' after it!!!!

At 9:18am on April 23rd, 2008, Sally-Anne Wilkinson said…: Let me know how you get on.

Hope you and Jaden are doing okay :)

At 3:46pm on April 15th, 2008, Sally-Anne Wilkinson said…: Crystal, it sounds tough for you. I do in some way understand about constantly fighting for your child because it took a long time to get Lucy adult support for school (she is not independent, and works on the level of a much younger child, so is a danger to herself if left unsupervised). It might be taken away again in July and I'm dreading having to start arguing with the local authorities again. However, you would think that the need for a wheelchair for a child with mobility problems would just be given without argument. It must be exhausting and demoralising when you are doing your best. Looking after a child with PKS is hard enough (especially on your own), without having to constantly be making phonecalls and writing letters for something that would make life easier for both you and Jaden.

Are you a member of Unique - it's based in the UK, but has lots of American members (www.rarechromo.org). If you become a member, you can receive addresses of other people with PKS children. I was sent a list, with a few names highlighted who were in a similar situation to me. I was also sent out details of people who had other rare chromasomal disorders but lived very close to me. Often, although the conditions are different, people are experiencing similar problems and have useful advice to give. (I was also given the name of a local contact and addresses that are useful for children with disabilities).

Another website I have found useful for contacting people in similar situations is:

http://www.pk-syndrome.org/

There is a page where people tell their stories, and I have contacted a couple of people who are similar. Like you, there is no-one who is the same exactly, but there are similarities and this helps.

You might have already gone through these channels, but if not, hopefully you'll be able to find someone to help or who just understands because they've been through it themselves.

Hope you and Jaden are okay, and don't worry about 'burning my ears'. That's what we are all here for :)

Take care and all the best
Sally x

At 7:39am on April 12th, 2008, Sally-Anne Wilkinson said…: Lucy is speaking in sentences now, but it seems to have come all at once - she took a long time to get going and her understanding was very poor, but that seems to be improving too. Lu was nearly two when she took her first steps - she took a long time to become a confident walker, and because of her low muscle tone she still struggles to walk any distance. She was still in a stroller until she was four and a half, and we still have to set a lot of extra time if we are going anywhere. (Lucy had a lot of speech therapy and occupational therapy sessions in the past which really helped).

It must be physically demanding on you, the older Jaden gets. I know that when I pick Lucy up when she is getting tired, she is a dead weight, especially as she doesn't help by holding on with her legs . Does Jaden get physio and speech therapy sessions?

At 12:58pm on April 11th, 2008, Sally-Anne Wilkinson said…: Lucy was late to start speaking, but is speaking now. It is only in the last few months though that it has started to really develop. If he has got a hearing loss, that will account for some of the delay, so you never know... I know what you mean though - you do learn to understand what your child is trying to communicate, when no-one else does :)

At 11:51am on April 11th, 2008, Sally-Anne Wilkinson said…: I just deleted your message from my page because I wrote your message on mine and deleted yours instead... duh!!!

Well happy birthday to Jaden! He looks absolutely gorgeous :) Lucy will be six on the 27th May.

Glad to hear he's healthy. Is Jaden showing signs of talking, or does he have his own way of communicating?

At 11:05am on April 11th, 2008, Sally-Anne Wilkinson said…: Hi, Crystal, I just noticed Jaden is just a little younger than Lucy (she is 6 in May). How is he getting along? He has a really cheeky grin!

At 4:59pm on April 10th, 2008, Gretchen said…: Oh, Jaden's picture is cute too! I've never seen him, I don't think!