Progress Update and Physical Therapy Assessment

As I write, we have just returned from Austin for the ordination to the priesthood of a college friend. It was a really neat experience to be a part of this special day for him and I know he will be a wonderful priest. We got there 30 minutes early to get the last two chairs in the foyer. It would have been neat to see everything from inside the church, but with three kids in tow, we were lucky to get the chairs we had. Danny left with Josh pretty early into it and I was floored that Emma was outstanding for three hours!!! I expected it to be two hours long, but I was so impressed she pulled through that I gave her $2 afterward. :) We saw many friends that we hadn't seen in years. It would have been nice to get to visit longer with everyone, but now that so many have young kids out of their normal routine, the talking was cut shorter than many of us would have liked. We experienced our first trip with the kids and handling Josh's food needs. For about 4 weeks, Josh has been milk free. For just over 2 weeks, he had been on his custom vitamins and supplements and we have removed gluten as well as the foods he came back allergic to in his allergy testing (wheat, corn, soy, sesame, egg, walnuts, peanuts). There's no food on the go with him so we were prepared with a cooler full of food for him to eat. For the most part, we didn't have any issues as he's becoming used to his new normal. Josh is such a trooper!!! In terms of progress, we have noticed several areas of improvement with the diet changes and supplements:

• Significant improvement in mood and drastic reduction in head banging. This is the biggest area of relief for us as you'd imagine. If we're all in better moods and not in physical danger, we can work together and make more progress in other areas.
• Improved speech and communication. He's constantly working on more nouns, speaking more clearly and we're starting to hear a few verbs and phrases. He's starting to say, "I want" instead of just the noun and pointing (which was huge to get to that point). I've really been working with him on saying what he's doing such as, "I kick ball" and "I do it." In a more normal 2-year-old way, he's verbalizing when he doesn't want something like "No, Emma!" and "No hands" when we want to hold his hand.
• Improved sleeping!!! Josh used to wake up at least once a night screaming. We'd often think he was in pain and after multiple wakings, pain reliever used to help him sleep. We always felt bad that he was in pain. Occasionally, we'll hear a cry during the night, but his night waking is pretty much stopped.

I have a ton of appointments set up for Josh. We kicked it off last Thursday with a physical therapy assessment. The therapist was great and we felt really comfortable there and with her assessment. We'll get the written report this week, but she pointed out some areas to work on. First, she observed that Josh has a vision problem. He is not focusing his right and left eyes at the same time and seems to have depth perception issues, which strongly contribute to his clumsiness. She also noticed that he doesn't seem to be able to use his peripheral vision, but is actually turning his head or moving his eyes to see things in the periphery. I made an appointment for him to see an ophthalmologist Monday afternoon to get that checked out. This is likely a culprit in his center of balance being off. Hopefully, we can get this corrected and he won't fall down or trip as much. As with so many other areas with him, it seems so obvious once some one points it out to us. We've noticed him missing things he has reached for several times since she pointed it out to us. She also observed him walking with his right foot turned in at the arch and encouraged us to get on top of addressing his W-sitting. I've confused some of you when I listed W-sitting as an area of concern. It's not a sign of autism, but can affect hip joint development in any child and can be a life-long problem if not corrected. We've been showing Josh how Emma sits criss-cross applesauce and have her on board with the nagging him as well. He's slowly starting it on his own and other times he gets pretty ticked at us bothering him about how he is sitting. The PT praised Josh's determination to try to do everything she asked. We see that at home a lot as he always wants to be able to do what Emma does. She gave us many exercises to incorporate into play to improve his coordination and build core muscles. It's been much easier than I expected to work these in. We have a little kid stool I pulled out for him to practice climbing on and off (to build leg muscles, balance and coordination). When he first went to climb up, he put his hands down on the stool to brace himself, then his feet, one at a time. He was very nervous about stepping off of it. I offered help as he built confidence. With the praise and cheering of Grandma and Grandpa, he was jumping off of it in no time. When we did the assessment with the PT, we realized that he has never jumped off of anything. We had just been proud he recently started jumping up and down. We'll continue our list of exercises to work on and he'll have PT once a week.

This week is jam packed, but I'm excited that we're getting beyond the coming to terms with our feelings and researching all we can, to actually getting some treatment going. I'll attempt to blog each night with updates. Here's the schedule:

• Monday: Morning meeting with nutritional counselor so we can feed him well with all the restrictions. Afternoon appointment with pediatric ophthalmologist
• Tuesday: Afternoon assessment and tour of an ABA therapy center. We're learning about this type of therapy and if it would be right for Josh. I'll try to describe it more after our visit Tuesday afternoon.
• Wednesday: Morning appointment for occupational therapy assessment. They'll assess his fine motor skills (PT assessed gross motor) as well as his sensory development. This is where we have the most concern for Josh as sounds and motion can be so upsetting to him. The PT we saw was also an OT and said it is great we are getting the OT assessment as well.
• Thursday: Morning appointment for speech therapy assessment. We have had Josh seeing an ECI (early childhood intervention) speech therapist for 9 months. Our pediatrician agreed with us that we needed more than their services were offering for Josh, which was two visits a month.
• Friday: we take a breath and have a fun day together!!!

I had also requested a neurological/psychological assessment at the same center so we can get our official diagnosis beyond our pediatrician saying he's on the autism spectrum. They do not have a test through the hospital that can be performed on kids under 3, so I am going to go the developmental pediatrician route. I wanted the neuro/psych assessment so our worries with damage due to head banging could also be looked at, but we'll have to go another route for now. We want to make sure we have the diagnosis in place to get the treatments we need and have some one to help us oversee where we need to help him in development. So, I have found which developmental pediatrician we want to see. I'll schedule that tomorrow. That's the last of the scheduling we have planned and hopefully, it will be just going to our therapy appointments from here.

I don't know if I'm happy or sad about this, but Emma is no longer a kindergartner!!! They had their end-of-year program on Friday and each kindergartner was awarded an accomplishment pin (they collect throughout elementary). I can't believe how much she has grown up in this last year, nor can I believe how much taller she is than most of her class! She's very excited about being home with us for the summer. She has already started a calendar for our week to have what we should be learning and eating each day. I give it two weeks before she's bored with me, although I really hope that is not the case. At this point, we really need to go to the grocery store and I have absolutely no idea what they will eat tomorrow, but we'll figure something out. Now that she's really starting to read more and I can figure out most of the words she's trying to write, she could be an outstanding helper for me in planning and preparing foods. She's very compassionate toward Josh, so I'd bet she'd be all over figuring out what we can make for him and what we need to buy. Tonight, she came back out after going to bed and said she was upset that Josh got to go to bed after her. I explained that Josh went to bed later because he was hungry, so hungry that he wanted to eat a can of green beans. I told her that if she wanted a plate of broccoli that she could stay up later also. She laughed and headed off to bed!

Speaking of bed, Kate has finally started to sleep longer stretches at night. Last night, she went 7 hours which is her current record!!! And, with that, I need my sleep too...

More updates to come with the exciting week we have ahead!