Letters to Heaven: LIUB 2014

LIUB 2014

One year ago, today, I posted a blog “why we light it up blue”, which shared our personal attachment to World Autism Awareness Day.

Just to recap a bit of Joshua’s growth this past year…

Joshua has made more tremendous strides and wonderful progress in his abilities and skills. We had a triumphant moment just a couple weeks ago when Joshua was finally able to put all the coordination [puzzle pieces if you will] together and ride on his tricycle all by himself. The trike was a 4^th birthday present from Nanny & Pa. Over the Summer and into the Fall David and I both tried working with him together, and then individually, multiple times to teach him how to hold on to the handle bars, put his feet on the pedals (and keep them there), and move his legs to make the trike go. He was not showcasing the motor planning needed to get all that together. He could do each part he needed to, just not simultaneously. We even tried to place his hands, legs and feet everywhere they needed to be and then move them to show him by example. If we did that, it was a total meltdown and very difficult to come back from because “I want to do it by myself!!!!” He would get extremely upset when you try to help him in any way. With his new P4 teacher at St. Paul’s, that was one key thing we were, and still are, working on. Basically we just continue to explain and let Joshua know it’s OK to ask for a little help and guidance sometimes, until he has mastered a skill. But, I tell you what, and his specialists all agreed, once Joshua does master a skill there is no going back. Once he gets it, he absolutely and totally gets it! It’s refreshing to see the changes over this past year. And, Joshua has had to deal with a lot of changes, including becoming a big brother just 2 months ago. He has been great with Lydia, but at times he’s a little overly anxious to her cries and other things, but overall he’s a very loving big brother.

I recently attended Joshua’s annual IEP meeting review with the P4 teacher, Speech Pathologist, Special Educator and Occupational Therapist. All agreed Joshua’s growth during his journey has been incredible. Unfortunately what I have learned due to grants and other things, Joshua cannot receive all available community based services within the program as long as he continues to attend St. Paul’s, since it is a private school. To get the full benefit of the program Joshua would have to attend his home school. It is always hard making decisions in the best interest of your children. You want to make the right decision for your child and for your family. For now, I am taking a little bit of a gamble and leap of faith. I am planning to keep Joshua in St. Paul’s for Kindergarten next year to see how he does. I met with his P4 Teacher and the Principal at St. Paul’s to discuss some of the concerns we have and I will soon be getting a specific recommendation on which K teacher to go with (there will be two different K classrooms and some re-staffing going on).

As a parent, my job now, and over the summer, will be to continue working with Joshua on specific areas that are difficult for him, including cut & paste art projects. He struggles most with the fine motor and motor planning needed to put together an art project from start to finish completely on his own. He has struggles with crayon / marker grip, scissor cutting and just placing the various pieces in the correct places. He needs a lot of prompts along the way. I will make up some fun and creative crafts we can do at home this summer and hopefully get him even more prepared for Kindergarten. I am also planning to keep him in his private OT sessions with “Therapy Solutions for Children” in Severna Park. He works one-on-one with a young lady there, Emily, and he has come super far in the last 3 months than he has the whole program, I think. We started out with gravitational insecurity issues, but those flew out the window pretty quickly and now we are focused on the fine motor & motor planning, as well as muscle strength and coordination. He is now doing complete zip lines, hanging on the entire time, pulling his legs up. His strength is increasing really well. They are focusing on his core muscles a lot. I will say they do still see that gravitational insecurity resurface when Joshua is presented with a new obstacle course or new activity that takes him off the ground. But as soon as he practices and gets used to it, he’s good! His courage is building and confidence level soaring!

I’m so happy with the progress he is making.

Specifically with the Speech Pathologist, Mr. Brian is backing off more and more with services and sees no need to even continue with those services, so that’s great!

Joshua reads books too. He can read books like Bernstein Bears, and The Very Hungry Caterpillar.

Are there still struggles? Well of course, he’s a kid,… what parent will tell you they have zero struggles with their children on a day to day basis. But, are those struggles and meltdowns manageable and significantly less than they used to be? Yes! Joshua has overcome many hurdles to get to where he is today and in the way he is functioning as an amazingly bright, sensitive, sweet, rambunctious little boy. We still have our little quirks, but he is overcoming any issues they may cause, and moving forward. Even though he has a kindle and iPad at his disposal I am happy to report that without me monitoring him, he is putting them down more and more on his own – especially since Lydia has joined our lives. When the tablets were new, he was overplaying them for sure. But, I honestly think he gets bored of things easily (at times) and he needs to keep feeding his brain more variety (wish he would feed his mouth more variety too!). I will say he has tried many new foods than ever before so we are at least moving in a positive direction in that regard. He is playing with many different types of toys throughout the day, and loves to go outside and play too. He loves going on adventures, even if that “adventure” is to a new store with Mommy, or outside to plant some flowers. Even though at times he seems complex in what he needs; he also loves simplicity. He can be happy just exploring some place he hasn’t been in a little bit and find it new again. I love seeing the world through his eyes.