Start of ABA Therapy

Hello! We've had a good week, starting with more smiles, giggling and talking from Kate. She really lights up when she has someone to talk to. She has to start early with the talking to have a chance to get a few words in between Emma's. I'm really enjoying my sweet little girl! Josh started his ABA therapy on Tuesday. I had explained to him that we were going to a "new school" and the names of his teachers. We got there too early and I didn't realize the doors wouldn't be open yet for us to go in, so we ended up standing outside the door for 15 minutes. Josh remembered playing there and wanted to go in, so there was no getting him back in the car and he wouldn't even go with me to practice climbing stairs. When we went in, the therapist took us to a big play room and started playing with him to get him comfortable before I left. He clearly could care less if I was there or not. After 10-15 minutes, I explained to him again that I was going to leave and pick him up in the afternoon. He gave me a hug and kiss goodbye and went back to playing with the toys. I got a call after lunch to let me know he was doing well and loving the attention there. When I picked him up in the afternoon, they carried him out to me asleep. He was pooped! Thursday was much of the same. He was happy to be there when I dropped him off and went straight to the therapist and didn't look back. He was in a great mood when I picked him up. There isn't too much to tell about what he's accomplished or how he is doing. This week, they completed a detailed assessment and worked on making Josh feel comfortable there. They'll meet with us to go over the development plan they put together for Josh based on the assessment. They'll also have a parent training for us to learn and follow the same teaching methodologies they use, as well as have monthly meetings with us to follow his development. On Thursday night, we were out in the front of our house and our neighbors were walking with their daughter, who is one month older than Josh. Josh ran right up to her, made eye contact, waved and said, "hi." I figure they were probably practicing that with him at ABA. I want to ask that because I haven't seen him deliberately do that to a child he hasn't known. He greets friends and family he knows, but it was neat to see him go out of his way like that! All in all, I feel really good about having Josh in the ABA therapy center. I think that it, in conjunction with healing his digestive system, will do wonders in catching him up. I did have a hard time seeing most kids there being far worse off than Josh is. Quite a few are not speaking at all and I could see the envy in the eyes of some of the parents with Josh speaking nouns galore when their children weren't talking at all. In some ways, I feel caught a bit between two worlds: 1. the "typical" world where it became really apparent earlier this year that Josh was getting farther and farther from the norm at daycare. I got "the looks" from other parents and shared concerns with his teachers. 2. the development disorder world where Josh is relatively highly functioning. I guess the sympathy I am feeling for the other families in the ABA center is similar to the sympathy the other parents were feeling toward Josh and our family at our daycare. I guess we're still absorbing the feelings of being in this new world. I am looking forward to their assessment findings, as I often find myself still talking myself out of there being an issue with his development. Danny and I did reflect this past week on more improvements with Josh. On the down side, we're having some milder head-banging again and he wakes up every single night for an hour some time between midnight and 2:00. He is itching like crazy. We usually have to give him Benadryl for relief and he gets back to sleep within an hour. On the up side, he is doing a great job of walking with us holding hands (mostly with Emma, but we'll take what we can get!), gross motor skills have improved greatly (balance, climbing, jumping), he's much more compliant with diaper changes and bath time, he is eager to communicate with us, and he is adding several more phrases to his vocabulary! This coming week, we only have his ABA on Tuesday because of the 4th. Our other therapy sessions haven't started since they are still getting pre-certification from our insurance for his speech therapy. Hopefully, we'll get that scheduled out this week. In other family news, poor Danny got in a car accident yesterday afternoon. Thankfully, he is okay and none of the kids were with him when it happened. He was driving in the right lane, about 40 mph. The two left lanes were stopped, but his lane was clear. A truck headed in the opposite direction was waved to turn left into a gas station by a stopped car in the left lane. He pulled right in front of Danny and Danny's car t-boned an F-150 truck. The truck flipped over. Danny and the other driver both walked away. Several people from the gas station ran over to help them out and a cop was there when it happened. Danny's hand has been hurting and that's been his biggest complaint so far. I'm sure that the emotional tie to his car will be more to deal with tomorrow when he starts to deal with the collision center. Everyone who knows Danny knows he loves this car. It's the first new car he's ever bought and it's just over a year old now. Hopefully, they can repair it to be just like new again. Here's a picture of the damage... :(

Have a great week! Have a great 4th if I don't make it back before then.

-Bonnie

A calmer week

This past week was wonderful! We had no appointments for Josh and his therapy sessions have not started yet. I called the ABA (Applied Behavioral Analysis) therapy center on Monday and got the ball rolling to enroll Josh on Tuesdays and Thursdays starting June 23rd. Once we got over the idea that Josh would fit in a school like this, we got excited. I went to the parent orientation on Thursday and have all the information to get him started. We bought him a backpack, sleeping bag (in case he can't survive the day without a nap) and lunch bag. I've been telling him about his new school and I really hope he understands and that eases the transition for him. We had also started epsom salt baths this past week to help draw the toxins out of his body. We saw a definite regression in his progress. He was wide awake itching in the middle of the night. Danny and I were up with him for about an hour each night. By Thursday, he was really grumpy, had pox-type bumps on his body, was flapping his arms again, toe-walking and tantruming. On Friday, we were at my parents' house for the day and spent some time outside to help him sweat. I think that must have made a huge difference in helping him get that crud out of his body. That night, he slept the entire night and was just amazing on Saturday! My gut says we got some of the toxins out of his body. I'm looking forward to future lab tests to see if there are improvements in his toxin levels. There has to be! We have also started the process of getting Josh in to see a DAN (Disable Autism Now) doctor in Austin. I am filling out all the entry forms and we should hear from them this week to get his appointment set up. The doctor we are going to see is Dr. Bryan Jepson. He has been a pioneer in treating autism and my gut says that's the way to go so we can have him oversee Josh's treatments. I think our pediatrician is on the right path, but she's new to treating autism biomedically and pediatrics is still her primary focus. I also feel uncomfortable that she and the nutritionist are not agreeing on some of his treatments. I would like to have someone who just treats autism oversee this. Since we are working with mega-doses of vitamins, I want someone who really knows what they are doing. I would never forgive myself if Josh were to receive the wrong dosages of vitamins. Emma is signed up for Vacation Bible School at our church, which starts tomorrow. She'll be there each morning this week and I'm really hoping she enjoys it. She can be such a home body, but definitely likes to be entertained. Crossing my fingers. I am still waiting to hear back from the scheduling department for the rest of Josh's therapies. Our schedule will be to have Josh in ABA therapy 9:00-4:00 Tuesdays and Thursdays. His remaining therapies will be scheduled on Mondays, Wednesdays and Fridays and I'm hoping they can group a few therapies so we'll have one day off to just enjoy and visit grandparents! He'll have physical therapy 30 minutes/week, one-on-one speech therapy 30 minutes/week, then a combined occupational and speech therapy session 30 minutes/week. If they can combine the PT and one-on-one ST to be back-to-back, we'll only have to go there twice a week. In terms of supplements, our regimen looks like this: Breakfast:

• Custom vitamin blend + cod liver oil mixed in sunflower butter (thanks to my mom for the suggestion of the sunflower butter since he has no idea what I put in it!)
• Herbal anti-histamine chewable
• Prescription anti-fungal (this is his last week on that)
• B-12 cream

Lunch:

• Digestive enzyme

Between meals:

• Custom amino acid blend

Dinner:

• Digestive enzyme
• Custom vitamin blend + flax seed oil in sunflower butter
• B-12 cream

Bedtime:

• Probiotic
• Herbal anti-histamine chewable
• Epsom salt bath 3-4 times/week

Today is Father's Day! Happy Father's Day to the few dads who read this. :) Poor Danny had to leave on a business trip this afternoon, but I told him he didn't have it too bad today. The kids were great in church today, he got to watch golf, get lunch from Cane's, then get away to himself and sleep through the night in a king size bed. Not a bad deal. His gift is a guilt-free day of weekend golf, a rare commodity these days. He'll be going with another friend in a few weeks once they return home from staying with a sick relative. Danny and I have been enduring a lot this year, but the great thing about Danny is that he loves our kids and always wants to be good to me and them. He is great emotional support for me as I have been flip-flopping constantly about what I think is best for us to do with Josh. He's taken off of work to go to assessments with me and he hasn't complained when my experiments in trying to make our new diet palatable don't go as well as I intended. I'm very blessed to share parenting, the fun and trying parts as well, with my best friend.

I can't let today go by without a shout out to my dad. I have always been close to my parents, but the last few months, I have really leaned on them. My dad has always been the type of person to just do what needs to be done, no to-do about it. He listens so well when I share my thought process about Josh and how we should get him treatment, and finds how he can help without being asked. Almost daily, when I check e-mail, I have e-mails with links and information related to the latest Josh topic I have mentioned. He has saved me HOURS of research. Then, there are the little nice things that don't go unnoticed. Whenever I go over with the kids to visit, he greets us at the car and helps me bring in the bags of stuff that go with three kids. He makes the kids laugh with his silliness and they all show much love for him (even Kate loves to giggle for Grandpa!). I am very blessed to have a dad who still knows just what I need to feel better, even now that I'm married with three kids.

I'm so blessed to have these wonderful men in my life and I love them so much! I pray that with these great examples around, Josh will grow up to be a loving, patient, faithful man.

Assessments Gallore

So, I assumed I would be able to update throughout the week, but that didn't happen. Last week was a whirlwind. So, I'll start with a cute picture of Emma and Josh with Uncle Chris. Great picture!!! They love playing with him. Now, I'll just jump right in...

Monday we met with the nutritionist and eye doctor. Josh's eyes are developing fine and the eye doctor has no concerns. Good news there. The nutritionist was amazing. She was a wealth of information and has so much experience dealing with kids like Josh. I went in with no idea what to feed him and left with several ideas. She also went through all the supplements with me and told me when each should be given to him and how they should be given to him for maximum absorbency. Great information to know!

She was very optimistic about Josh and further explained the results of the nutritional testing we had done through our pediatrician (this nutritionist used to perform this testing for our pediatrician). Some of the things she noted are that Josh is not absorbing the animal fats that he's eating and that head-banging is usually linked to a vitamin E deficiency. She also looked at his poor legs, which are covered in sever eczema patches and scabs. She said that his foods on his allergy test that were rated on the lower end could be introduced next week one at a time. We'll definitely be trying eggs back first tomorrow. That's been a thorn in my side!!! I have many failed attempts at trying to make baked goods for Josh that just failed. Before we went to Austin last week, I stayed up Thursday night to make waffles to have for breakfast on our trip. I expected it to take me about 30 minutes. I spent 1 1/2 hours, mostly prying the waffles off of the waffle iron and they were not the best consistency. Previously, I had attempted blueberry pancakes that wouldn't burn! The middle stayed gooey, so we let them stay on the pan longer. Then it became a curiosity for me and Danny. After 20 minutes the stinking pancakes wouldn't burn. Sigh. Another batch for the trash. Apparently, many "allergy free" mixes are not friendly with egg substitutes and actually need the real thing. I had several types of alternative flours made by the same company that makes an egg replacer and most of their recipes on the box have an asterisk saying they don't work with the egg replacement and require real eggs. Unbelievable. Anyway, I digress. I finally found some options and you'll be glad to know Josh hasn't been starved to death. :)

Overall, the appointment with the nutritionist was the best of the week and she added some supplements to our regimen to help Josh rid his body of the mercury. We'll meet with her again next month to have her adjust his custom vitamin blend and to more aggressively work to get the mercury out of his system. To give context, Josh's issues are all related. The yeast in his digestive system and his body's lack of digestive health causes everything that enters his body to not be properly absorbed. So, a lot of toxins leak from the digestive system into the bloodstream, leading to neurological issues. High levels of mercury and high levels of digestive yeast are common traits of autism. You can't just clear out the yeast and have all be well. Until the mercury is out of his system, the yeast will continue to overtake his digestive system. We have been working on ridding his digestive system of the yeast, then next month we'll more aggressively go after helping his body to detox from mercury, then continue to help his digestive system balance out the levels of good bacteria and handle detoxifying itself.

Tuesday, we went to an ABA therapy center for an assessment and tour. It was a nice place and they work with kids individually to teach them social, play and communication skills. We went home and felt in turmoil a bit. Seeing kids that seemed worse off than Josh made us wonder if it was too extreme for him to spend two days a week there, or were we just wearing our blinders again? We often find ourselves talking us out of Josh having any developmental issues. I had read about this center at the beginning of all my research, but since then, they became in-network for our insurance. In Texas, a law was passed last year that requires insurance companies to provide treatments for autism spectrum disorders, including ABA therapy (previously autism was handled as an untreatable mental illness). So, now some of these centers are taking insurance which was not the case as recent as a few months ago. After back and forth, and some clear signs after prayer, we feel it is definitely worth a try. I'm now very excited about the prospect of him getting individualized treatment, their parent training program (so I can follow the same methodology at home), and am hopeful that this could be the treatment to help Josh turn the corner he's so close to right now.

While the lady who did Josh's assessment talked with us, the director started to work with him rather than just letting him play freely. They were working on taking turns (which I've tried at home) and Josh was not too pleased with her, but she didn't worry about whether or not he looked like he was having the time of his life. She worked so well with him and it gave us a taste of what things he would do there. We were impressed by the interactions between the therapists and kids during the tour. Once we got over our acceptance issues, we've become more excited about this opportunity. I will be getting the referral from our pediatrician tomorrow and schedule when we can start.

Wednesday and Thursday Josh had is occupational and speech therapy evaluations. Nothing too surprising came out of that except more realization of Josh having more motor skill weaknesses than I realized. We've been given many exercises to build his arm and leg strength, work on balance, as well as his fine motor skills. It's amazing all the things you notice once some one points them out to you. I feel I have to be much more careful with Josh when we leave our house now. On one outing last week, he took a spill on steps that I don't think he even saw. I get comfortable with what he can do at home and it is a little scary when we get out how quickly things can turn.

In terms of speech, she assessed him just below the "normal" bell curve. First of all, he's made HUGE progress in the last few months, and significant leaps since we've started his dietary and supplement changes. His eye contact is clearer and he has a strong desire to learn what to say for situations. I expressed my concern about his language not seeming conversational and natural, but memorized. He has an outstanding memory and attention to detail, but seems to lack the understanding of emotions. He knows when he sees a candle, fire or flame that he says the word "hot", but I don't think he understands what "hot" means. He bites, then says, "no bite," but he doesn't seem to understand that it hurts to bite. He can see a fan and will say if it is on or off and that it goes "round and round and round," but if we were to ask him if he saw a fan we wouldn't get a yes or no. For his speech therapy, they are going to do a combined occupational/speech therapy session and one individual speech therapy per week.

We ended our week on Friday night with a reception for our college friend who was ordained a priest the previous weekend. He said Mass at our friends' house and we had dinner afterward. Yesterday, we had a baby shower for my good friend, Jennifer. Our daughters were in daycare together since they were 1 and have literally grown up together. She is expecting a girl next month and we can't wait to meet her! I always enjoy baby showers and we had a good time!

Saturday evening, we had some friends over for dinner who hadn't met Kate yet. The husband went to high school with Danny and was in our wedding. They just moved to Dallas from Atlanta and we've enjoyed getting to know his wife more. During dinner, she asked more about Josh and it turns out she used to be an ABA therapist in college! We were able to ask her a few questions and some of our concerns were addressed. It was great to catch up with them and we'll enjoy having them back in Dallas.

This was an exhausting week, but a great one. It's nice to have things moving on treatments for Josh. Danny and I have had some wonderful talks and have been getting each other through the ups and downs of accepting the situation. Mostly, I feel a sense of peace that things will be fine. It has been so hard to go through the process of accepting this diagnosis and trying to figure out how we are supposed to treat it all at the same time. We have been faced with so many decisions to make without a checklist of what we are supposed to do next. I truly believe that God has just taken over for me the last few months. I have had really strong feelings on calls to make or places to go, and each has led me to the next step. People have said things to us that have filled puzzle pieces we needed, referred us to resources, shared information they knew and have lifted us up in prayer. Our college friend who was ordained a priest last weekend gave the most beautiful blessing to Josh Friday night. He didn't know many details of what we've been going through, but his carefully chosen words to bless Josh brought tears to our eyes and an overwhelming sense of peace. Particular words he said were straight from my recent prayers and God has really been showing me that he is in control and will take care of us.

The schedule for this coming week is currently a blank slate. Ahhh.

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!