Good progress and official diagnosis

I am SO overdue on a post. We can blame Kate for deciding she doesn't want to go down for the night until closer to 10:00. By the time dishes are done, I haven't really had the energy or inspiration to write. We can also blame the Bachelorette since I'm hooked watching it Monday nights. Enough excuses. Kate and Josh are both napping, so I'm going to get a go on an update.

We are off and running on all of Josh's therapies. He's been doing his ABA all day Tuesdays and Thursdays for about a month now. He is very happy there and I was able to observe him by camera last week. He is responding very well to the therapists and enjoys the individual attention he gets. Some of you have asked for more details on ABA and what he does there. ABA is behavioral therapy to teach him how to behave and is an individual program based on his development. His current program includes the following:

1. Receptive comprehension. Recognizing names of objects, following commands, etc.
2. Identical matching. Putting block puzzle pieces into their corresponding spots, matching cards, objects.
3. Manding. Teaching to make requests. They set up scenarios or take natural opportunities to get him to request what he wants.
4. Fill-ins. A phrase is started and he fills in the blank, such as "Ready, set, go." "I love you." "A cow says moo."
5. Play time. How to socialize with peers. When we were observing, the therapist set up a scenario where a peer had a toy Josh wanted and worked with him to request it.
6. Spontaneous imitation. Copying what someone else is doing. We have seen HUGE improvements here! Being able to copy and mimic someone else's words and behavior is a critical step in language development.
7. Instruction following.

Josh is also getting 30 minutes each of physical, speech, and occupational therapies. I get a lot of homework from these sessions and we work on incorporating exercises into games each day. Josh has improved immensely in walking up stairs and often wants to do it by himself, so we spot him.

We continue to see many improvements in other development! Josh is making eye contact with us when requesting to watch a show. He gets the remote, comes to one of us, looks in the eye and says, "Watch Barney, please." And, he's figured out that a smile makes us a little more likely to say yes. He has a long way to go on eye contact, but it's definitely improving. Another exciting moment was when we were at the doctor's office (not the HORRIBLE visit I mentioned on Facebook!). There was a toy car in the room. Josh pushed it around and made car sounds. Typically, he pushes cars back and forth to watch the wheels turn around, or picks them up to spin the wheels with his hands and watch them spin. So, this is a big step in "appropriate play" in our new world lingo.

He's been throwing out several longer phrases. He was playing with a toy vacuum recently. He wanted it on and said, "ON." I told him, "You can turn it on." He said, "I can turn it on" and proceeded to turn it on. Very exciting! The most exciting verbal expression from the last two weeks was last week. There was a small package at the bottom of the swim diaper box. It had a small blow up beach ball in it. I set it on the table while I got him dressed to swim. He pointed to the package and asked, "What's that?" He asked me two times! This is exciting because Josh initiated the conversation and asked me something. For all of the language Josh has been building, it is usually naming objects or requests for things he wants. So, for him to initiate conversation was extremely exciting!

I mentioned that Josh is starting to imitate a lot more. Emma hurt herself last week can came over to me crying. Josh was right behind her copying her every sound and move. Emma touched her head and cried. Josh touched his head and cried. Next thing I know, I am hugging one child on each leg, with echoing cries. I chuckled my way through that situation.

I have been reading about Texas laws on insurance coverage for autism treatments. For years, parents have been avoiding getting an autism diagnosis because it shut the door on insurance coverage. It was treated as a mental disability that was not treatable. Texas and several other states have passed laws in the last two years to require insurance companies to cover autism treatments including ABA therapy. Our insurance covers 30 visits/year without the diagnosis, but with a diagnosis will cover 60 visits/year and that can possibly be extended depending on how much is spent on our other therapies. One of the ladies at the ABA therapy center Josh is at, helped us work through insurance coverage and with his autism diagnosis, we are currently approved for 60 visits! I cannot begin to explain what a relief this is and I just know God is walking me through this journey we're on.

The last few months have been an absolute blur. We went from picking up on there being more going on with Josh than a speech delay, getting metabolic testing, to starting to read about autism, to realizing he had it, to figuring out what that meant for us and how we were going to deal with it. As a mom, there is such an emotional connection to your child, that when something isn't right with your child, you feel it too. We got this diagnosis from the pediatrician and were given a packet of resources and told that she'd write referrals if we needed them for the therapies we decided on. I was so lost. There were so many things to understand, so many decisions to make, all while grieving for what this means for Josh's future. I feel like a switch turned on inside of me. What mattered the day before didn't matter anymore. Nap time and after getting the kids to bed, I was online reading about autism, reading books from the library and just absorbing everything I could. I had a pit in my stomach and waking moments at night would flow countless autism words and treatments through my head. I prayed, but even that was a blur. At some point in this, God gave me peace. I hit a point of overwhelming peace and knew that Josh would be okay. I don't know what "okay" will look like, but I know we'll be fine. God took over at some point and as we've hit critical decision points, I get these overwhelming feelings that tell me what to do. I can only explain it as faith. I find this important to share, as you have all been so complimentary of our treatment path for Josh, but I have to share that it has been nothing I have done. I have felt lost quite a bit of the time and if it weren't for all the angels God has sent along the way, I would be a total mess. God sent me angels to help me research, listen to my theories about new symptoms and rashes, talk through treatment options, figure out how to fund treatments, give me words of love and encouragement, and also to treat me like I am still Bonnie.

Lastly, we got Josh's "official" diagnosis from a developmental pediatrician. We weren't going to bother with the label since we were just worried about getting Josh help, but with Texas laws, the label helps us get additional insurance coverage for Josh's therapies. The diagnosis for Josh is PDD-NOS which stands for Pervasive Development Disorder-Not Otherwise Specified and is on the autism spectrum. He scored a 10 on the assessment. The cut off for the autism spectrum is 7. 12 and over is considered classic autism. The doctor was extremely nice and took his time with us. From the emotional side, it wasn't a shock to us and based on my reading, I knew the diagnosis. He was very complimentary on the treatment paths we have chosen for Josh as well as how early we have been able to intervene. He also found merit in the theory that malabsorption and digestive issues can cause kids to end up on the autism spectrum. He said Josh was extremely analytical and smart and was very optimistic about his prognosis for recovering and progressing in his development. We will benchmark again in a year and he felt hopeful that "Josh will be a different child the next time I see him." He recommended some genetic testing to rule out some of the potential causes of autism and also so our kids will know if they are carriers for one of the genetic causes of autism. He also recommended some testing to further confirm malabsorption issues. I'll review all of that with Thoughtful House when we head there next month.

Kate is turning into Laura P. Laura P. is a little girl I used to babysit. Simply, when her mom was gone, she cried. When I babysat her, I would attempt to comfort her and walk her around as she cried for her mother. There was little I could do to make her happy. I had figured out at some point that turning on home videos of her parents settled her down. Well, Kate has been screaming for me when I have been getting out of the house. She cried for Danny for 45 minutes on Sunday when I went out with Emma. My mom watched her while Danny and I took Josh to the developmental pediatrician. She screamed for my mom. Both times, she stopped when I walked in the house. It makes me feel sad to be apart from her if that is what she does. I remember babysitting Laura P. and it was stressful. I don't want to put others through that. So, we'll keep working on it and hopefully this is just a phase. Kate is laughing quite a bit more. She has rolled over a couple of times and we're trying to convince her to do it more!

Emma has been continuing to work on learning the value of a dollar. She earns $3 per week for doing her chores. If she complains or doesn't do her jobs, we take money off of what she'll get for the week. I like the amount because she can't get a significant toy too frequently (a $10-$15 one). She has to save a few weeks and our hope is that she'll learn to save her money. Emma is not a natural saver. If she has money, it's burning a hole in her pocket and she'll find something that costs less than what she has. I regret the day she learned about the dollar section at Target. I grit my teeth and refrain from buying her any toys so that she'll learn to save and value what she buys. She has been dreaming about American Girl dolls for months. I explained to her that they are $95. If she can save half of the money, we will pay the rest. I figure that if she wants it bad enough to save that much, she'll understand the value by that point. We have also showed her the similar dolls at Target that are $22. After Easter, she had enough money to buy one of those and she did. She occasionally goes back to American Girl doll magazines and talks about saving up $45 (I rounded down for her) for one. Last week, she resolved to save. At $7 in her bank, she knew she had a way to go, but really wanted one. We went into Bath and Body Works together and she spotted a pink rubber duck. Yes, a pink rubber duck. She wanted it. I told her I was not going to spend $4 on a rubber duck that we didn't need. She said she could use her money. Really, Emma? Sigh. I feel defeated. "It's my money, Mommy," she told me. I sighed another breath of defeat, "Fine, Emma. It is your money and if you find value in a pink rubber duck, whatever." I can only hope that some day, she'll learn to value a dollar, or else appreciate being able to bathe in a rainbow of rubber duckies.

Over and out. No promises on my update schedule, but it can only get better, right?