I wanted to introduce everyone to Jake. Jake is 10 years old and a wonderful child. He was originally diagnosed with Pitt Rogers Danks Syndrome, but later a wonderful geneticist told us he felt Wolf Hirschhorn and PRDS is one and the same syndrome. Jake is 51 inches tall and weighs 70 lbs. He has a unbalanced transolcation with 4 and 15 which was from me. I have a balanced translocation.
Jake is an amazing kid and can do many things. He walks with a walker and can take a step or two unassisted. He does use a wheelchair for long distances. He is currently home schooled due to recurrent infections, and he learns wonderfully using Applied Behavioral Approach. I teach him at home using ABA, and a life skills curriculum. He is also learning preacademic skills and I use the ABLLS guide to determine where he is at developmentally. Jake needs help with feeding and eats only pureed foods. I have him on a gluten free diet which has been wonderful. I make all of his food. He was diagnosed at 6 years of age with PDD-NOS. Jake can put a spoon to his mouth and feed himself from a sippy cup. We recently put him on a few of the supplements for mito disorder and are hoping this will help his immune system. Jake started having seizures at 3 years of age, and they can last as long as 2 hours. They only occur when he is sick, has growth spurts, or when he has a surgery.
Now my favorite part is talking about how wonderful he is, and the guirky stuff that he does. He is super affectionate kiddo. He loves to ride four wheelers with his Dad, and enjoys swimming at the lake. He seems to enjoy kayaking which is super exciting. He rides an Amtyrke bike. We have taken him horseback riding which he enjoys as long as the horse keeps moving. He has alot of quirky habits. He gets irritated if you put stuff on his TV, and always has to throw his sippy cups on the floor. Jake does not speak words, but can make it known what he wants by sounds, or taking you to what he needs. He is doing wonderful with his IPad and some of the new apps. He loves loves loves fast rides, if you put him on a little kids ride he gets very angry. My favorite thing is that he still loves to snuggle and he is 10 years old.
My husband and I feel very blessed to have Jake in our lives and enjoy every minute with him. By the way we live in Central Texas. I hope all is well with everyone!
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It’s great to hear the stories about the older kids. Jake sounds like a great kid. Thank you for telling us about him. I would love to hear what apps he is playing with on the iPad. We have a few iPads and aren’t sure what Kendall would enjoy playing. Although, her fine motor skills are still way behind, so there may not be many that will work for her just yet.
Oh yeah, it’s funny that Jake gets angry if you put him on the kids rides. That’s hilarious.
Jake sounds like a wonderful kid. Thank you so much for sharing his story with us. I think I look at this site everyday and sometimes 3 or 4 times a day. I enjoy reading about all the happy children and the wonderful lives they are living. I would love to know what kind of things did you use early on with teaching Jake? My Taylor has just recently started school and it is only 2 1/2 hours 3 days a week. I try to do the best I can with teaching her but some other ideas would be great. Thanks so much for sharing with us.
Hi Christy! When Jake was younger we worked alot on his gross motor skills and his fine motor skills. I also spent alot of time looking into what was motivating for him. At 3 years of age we found out he loved the tv, well Veggie tales and Elmo. I would then use the TV to motivate him to learn new things like pull to stand to see it, hand me items, and many other things. One of the greatest resources is a book about Gross Motor Development in Cp and Similar COnditions on Amazon. I wish it was around when Jake was younger. Also the ABLLS guide is fairly inexpensive and it will give you an idea on what types of things are important. ABLLS stands for Assessment of Basic Language and Learning skills. It was used originally for kids with Autism, but is wonderful for any child with a disability. Feel free to contact me by email if you need anything.
Jake really does sound like an amazing kid 🙂 my daughter Sabrina is going to be 2 in July and I imagine that when she’s 10, she may just be the female version of Jake! Sabrina likes to throw things on the floor, go fast, gets angry about going slow, and she LOVES tv. Can’t wait to hear more 🙂
Michelle,Thank you for allowing us to meet Jake .He is a wonderful young man.Hope that things are good in TX. We are back in Fl and have our little peanut. She is a beautiful baby. Your insight has helped us and my daughter has done so much research,we are going to many Dr.s at this time but she is home from the hospital and I love being a grandma!B lights up my life! Thanks for the support you have given,and for answering the many questions we had. Sincerely,Toni
He sounds like a joy to be around.