Headlines - M turns 2, Life races on

Greetings! This is a quick post without much effort because I've been wanting to blog for weeks but haven't had the time to put more than two sentences together (aka Facebook). Things are going well, but not without the rollercoaster drama that seems to encompass us all. I hope to elaborate later. In the meantime, if you don't use Bloglines or Google Reader to follow your blogs (and mine), please check it out... then you can keep up with me without checking in everyday and eventually giving up on me for a dead blog.

In summary, M has been doing so well with her ABA sessions. She's paying attention, following directions, interacting, playing with toys, and becoming affectionate. I've also had her on the GFCFSF (gluten free, casein free, soy free) diet for 6 months and I believe this has helped some too. We just had some additional biomedical testing done and found that she does have food sensitivities... beans, for example. So for the last week I stopped feeding her egg whites, beans (even green beans), and peanuts. And I think she's been doing even better. I know I don't feel like doing anything when my tummy hurts... I wonder if this may be something. Even with a a cruddy-nosed cold this week it seems like she's doing better.

Given that, the doctor (a DAN doctor... DAN for Defeat Autism Now) told me I should put her on a rotation diet. Huh? There aren't enough types of milk even! I'm seeing a pediatric gastroenterologist Monday to see what she says about M's test results and if this rotation diet is necessary. The gastro has a nutritionist on staff that might be able to help me more than the DAN doctor (he said, "It's easy.. grind your almonds at night and soak in water overnight.").

M had her two year checkup... she's 90th %ile in height and 75th %ile in weight. Not bad for coming from an orphanage a year ago. Her gross motor skills seem right on track. Fine motor a tiny bit behind. Social/developmental skills about a year behind, in my estimation. I don't know if this is normal for a child adopted from an orphanage at 11 months. No one I have consulted with has had any experience with institutionalized children. My expectations were always that she'd be caught up by now, but it hasn't happened. I have to keep in mind that she's making forward progress and focus on that. I have more hope now than I had 6 months ago.

Now for a few pictures...

The birthday girl! M turned 2 last week.

M and her sister and brother. Cute as a button!

Fun in the tub.

C and his barfkin for the Cub Scout pumpkin carving contest.

C cutting metal reinforcements for the post holes of the tree house Dad is building.

Squeegie Milestone

I saw a huge milestone reached tonight.

Earlier when I was using the squeegie to clean the glass in the shower, M wanted the squeegie and she tried to clean the glass too. This may not seem like a lot for a toddler to do, but it's the first time M has ever taken a tool and copied its use from watching me and letting me show her what to do. It's huge! I think she's starting to get it.

We all went to Raging Waters today in San Jose. It was a loud, wet and sunny place where you spend a lot of time waiting in line to go on each waterslide. (I could go on and on about how poorly managed the place is.) Surprisingly, there were so many little play pools that is was a lot more fun for M. She had a great day outside in the sun today and tonight I have never seen her before in such a playful affectionate mood, even though she was laying on the floor, exhausted. (It makes me think we need more sun on our property. Oh, and a pool. With a waterslide. That would be nice.)

In her sessions this week she has been repeating some sounds during sound pairings. A month ago she wasn't repeating any sounds. This week she has also been working on pointing, and she is reaching for things now. She just doesn't have the proper closed fingers, index finger out hand position. I have also noticed that she is looking for her sippy cup and reaching for it when it's on the kitchen counter. She has never searched for it before this week. Instead she would just have a roll-on-the-floor tantrum when she was thirsty. The other thing she did today was a small, simple match bowl with bowl.

Tonight was special because I think M realized even more that we are her family. She seemed so at ease with us and was very happy to be with us. It felt really good.
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Longer Out Than In

As of last week, M has now been with us longer than she was in the orphanage. We met with our social worker last week for our 1 year post-placement report and after explaining all the hell we've been through the past four months she was very reassuring and helpful. She told us she noticed M paying attention to myself and the kids more; she wasn't closing her eyes. At the end of our time the woman said 'Bye bye' to M and she received a huge arm wave! It hasn't been repeated since then, but that's the way of this thing we're going through right now. Once in a while we get a word or wave from M, but nothing is consistently repeated.

Returning from our Tahoe vacation was hard. It took M two weeks of crying through her sessions before she started to warm up to her therapists again and get back into the program. But then she took off! Last week and this week she has been doing so well. Last week she was babbling even more. And she started doing something new, she started babbling in response to Kevin (M's favorite person) and our housecleaner, C (her other favorite person), who she only sees once every two weeks!

We went to dinner at our friends' house this weekend in San Jose and we heard a distinct, "All done" when she was being held by "Bob", squirming to get down. Jawdropping for me. She also climbed into my lap while I was sitting in a regular chair... another new thing. And yesterday, after her afternoon session, she demonstrated a very deliberate "high five" to both her therapist and I. Kevin watched her do it to me when he came home from work and I saw his jaw drop.

M's program director dropped by yesterday after not having seen her for two weeks and was ecstatic about her progress. It is so good to hear from others who recognize the great gains that she is making.

What is interesting is that while M is making great progress upstairs with her basic non-verbal imitation skills, I'm finding that she doesn't have as much energy left for me when she comes down. I was talking to one of her therapists yesterday about how I felt like I keep having to rebuild her trust in me. It comes in waves, and when I get busy and don't have consistent one-on-one time with her, she really doesn't want me holding her or playing with her. Some may say that it's normal behavior for a toddler to not want to spend time with the main caregiver when there are other people (like Dad, C and the kids) who are more fun. But I think it's more than that. I cannot discount the fact that M had multiple caregivers coming into and leaving her life for the first 11 months... whom could she trust then?

I get the feeling that a lot of her refusal to make a social connection with us is because she has some deep-seated trust issues. Maybe there are organic issues too... but I just have a sense that she still doesn't trust us completely. And that is the difficult part for me... the twins are home all day now and I'm torn between spending time with them and time with M. M and Legos don't really mix well, although less and less little bits are in her mouth these days. She's more of a babyzilla, coming to destroy the Lego city. I'm learning that if I raise my voice in reaction to something the twins have done, or even when M decides to sweep all her highchair food onto the floor and stand up for the 99th time and I get frustrated... there goes the trust. This is hard!

She may also just not have the bandwidth to do well upstairs with her therapists and still have lots of attention and affection for us at other times. Her two sessions take a lot of concentration and energy. I understand that.

At any rate, she is slowly, very slowly, starting to communicate with us. I am thankful for that. As the director was leaving yesterday, I asked her if it was typical for children in the ABA program to go through cycles of progress or if once they start making gains they sustain the momentum of the learning they have achieved. She said that usually, except in cases of illness or vacation, the momentum is sustained. I hope that is the case.

Interview with Dr. Federici

This is a great interview with Dr. Federici that I discovered through FRUA. He has extensive experience in the field of neuropsychology and how adopted children have been affected by their early time in institutions. I highly recommend anyone who has adopted a child from an orphanage setting take a few minutes to listen to this.

Dr. Federici also has a website with several articles he has published over the years on the effects of institutionalization. I originally discovered his website by googling institutional autism. He also has a book, "Help for the Hopeless Child" which I haven't read but am going to look into.

Two months progress (and a trip to Tahoe)

My favorite activity at Tahoe... isn't that what Kevin and I seem to do with everything we do?

Thank you all for your kind comments on my 'coming out' post. It's encouraging and liberating to be able to share what has been going on. I wanted to share some good progress that M has been making, plus some photos of our recent annual camping trip to Tahoe!

The car was packed so full we couldn't see daylight out the back. It was worse on the way home... laundry expands!

In June we increased M's ABA therapy hours from 50 to 100 per month, which works out to about 2 2-hour sessions per day. We usually do one early in the morning and another in the afternoon. There have been several rough points where either she didn't have the stamina, or simply didn't want to follow the instructions given by her interventionists. Thankfully, M's whole team communicates with each other daily and when she is having a hard time one of the Ph.D.s comes out to help and make adjustments to the program. As soon as they introduced a little chair for M to sit in for the work part of her sessions she stopped crying so much as she was able to distinguish better the difference between play time and work time. A good day is when I hear the interventionist whooping it up, giving her lots of loud verbal praise because she is starting to imitate sounds or follow very simple directions.

In the past two months I have seen M's attending skills improve (awareness, paying attention, tracking sounds, eye contact) tremendously. She looks at us almost all the time now when we call her name. She was tracking her cousins when we were all at Tahoe last week.

The kids on the hike from Vikingsholm to Bliss State Park... a total of 4.6 miles, their longest hike yet.

The major change has been that she is starting to imitate very simple tasks. Shake bells and push car... but as she makes progress the tasks will become more complex until she develops the ability to imitate and learn on her own. She is also starting to vocally imitate during her sound-pairing. She babbles all the time now. If she's not babbling then I know something is up... she's hungry, thirsty, tired or not feeling well. These are all good signs!

One of the spectacular views from the Rubicon Trail.

On the attachment front, yesterday I had some time to sit down and hang with her all morning because she only had an afternoon session. (The sessions keep her so busy... I feel like frequently I only have time to dress, feed and put her down for naps between sessions and shuttling C and K around). I had to go down to the car to get something and for the first time she stood at the gate at the top of the stairs and cried like a normal 'separation anxious' toddler. She was needy yesterday too... always wanting to be near me and touching me. It was such a great thing for her (and me). (If only she'd taken a nap....)

M doing one of her favorite activities during camping. She loved the freedom to run around!

educating Sandy

I've been sitting on this post for a long time, unsure of how to relay the tumult that we have been through the past two months. Or if I should even relay it.

I left off the last post with two calls out, one to a child psychologist and the other to the early intervention program in our county. I am so glad that I made those two calls. While it may not be fair to compare M to C and K at the same age, I am so glad that I pulled out those old tapes that day. While I thought I was only seeing a learning delay, it quite possibly was more.

Our visit to the child psychologist was eye opening. Both Kevin and I took M and were hoping to gain some insight into what the root of some of M's behaviors were. She was withdrawn. Her eye contact was spotty. She rarely responded when we called her name. She wouldn't engage with us when we spent time on the floor with her trying to teach her how to play with her toys. She wasn't talking, and had stopped babbling. She didn't point. And she still hadn't learned to wave bye-bye, after 6 months. She hadn't learned to copy us doing anything. Was it attachment? Effects of institutionalization? The psychologist shot straight from the hip at us. She thought M was showing signs of autism. We were shocked. In denial. We frantically searched for some other reason. Perhaps institutional autism? With some attachment issues? When I finally had the courage I got on the internet and started searching. Reality started to sink in as I recognized that some of M's quirks matched with the symptoms described in autistic children. After a couple days of blackness, I realized that I would need more time for acceptance but that I would also need to act quickly.

So we did.

The early intervention program sent someone out to assess M that had a Ph.D. in Psychology and ran an ABA program here in the area. While it was hard seeing how low M scored on the assessment, I was glad because it confirmed my worries when I made that first call. As a result, M initially qualified for 100 hours per month of intensive behavioral therapy. We started her out at 50, or 10 hours per week. The program started after Easter and we are in our 5th week now. M has a team of 4 people, plus our EI case manager. She has at least one two hour session every day with an interventionist whose job it is to teach her how to learn through repetition and positive reinforcement. The first two weeks were hell. She cried through each session in anger and despair. Finally toward the end of the second week she started to settle and by the end of the third week she didn't cry at all. Already we have seen improvement in her eye contact and responsiveness to her name. Even in the first two traumatic weeks we saw her come out of her sessions with more interest in her toys than we had ever seen.

We started M on a GFCF (gluten-free casein-free) diet by removing all dairy, gluten and finally soy. We saw good improvement in her responsiveness when first removing the dairy, and her big tummy flattened out. Not much of a difference with gluten removed, but again we believe she's been more interactive with the recent removal of soy. It's subjective. Our next step is to double her hours of ABA treatment so that she is receiving the 100 hours per week, which is around 2 2-hour sessions daily. We also have an appointment with a biomedical physician next month who will evaluate her health and determine if she has any problems with vitamin deficiencies or heavy metal poisoning.

M has no official diagnosis of autism. We have just been fortunate that our early intervention program recognized her delays and decided to treat her symptoms with ABA therapy. We don't know the real cause of her delays. It could be genetic or environmental. Certainly spending the first 11 months of her life in an orphanage didn't help and it very well could be a form of institutional autism, where the symptoms slowly fade over time. We also don't know the effects of the vaccinations she received in Russia, nor possibly the ones she received since she arrived home with us. We did delay her 18-month vaccinations until after she reaches the age of two. But whatever this is, we are aggressively treating it in as many educated ways as we know how. She is very young, and studies statistically show that many hours of intensive ABA therapy produce the best results for children with these symptoms. Our ABA team was encouraging when their goal from the start was to have M mainstreamed into preschool by the time she turned 3. I think her progress just in the past two weeks has us thinking that this could be reality. I certainly hope so.

My reluctance to blog about this stemmed originally from my own uneducated perception of autism. From the first moment we heard that word our lives and our future swirled around us like we'd been flushed down the toilet. We felt despair and isolation. Honestly, my attachment to M took a big hit because I didn't know if I would ever really KNOW this little girl that I had hoped to raise. Finally I realized that God has given us this little girl for a purpose... why otherwise did we see the miracles that took place to pull our dossier together and bring us to Russia successfully three times last summer. In all my skepticism I cannot deny that M was meant to be with us. In my darkest hours during the past two months, M has given me glimmers of hope, like when she started babbling back to me 7 weeks ago. When she started pushing her activity walker around last month. Yesterday when she quickly turned around and looked at me smiling when I called her name.

In a way I feel like I'm still waiting to meet her. Waiting for her to come out. Every milestone now is sweetly savored. I take great joy in her accomplishments. Today she ran while pushing her baby stroller from room to room. She is babbling now with intonation... there are thoughts behind those sounds! I swear that when she starts talking I hope she never stops.

We have a long way to go, but I am thankful for each little bit of progress. I hope that sharing our journey with M and some of what it entails will help and encourage others. My own hope grows because of others who have shared their stories with me.

Big guns

This is just a quick follow-up to the last post. I probably shouldn't even be blogging but I am so appreciative of the last few comments and I have some thoughts I'd like to share.

A large part of M's regressive behavior that we saw I now believe was due to the fact that she was miserable with her cold and the teething. As soon as the cold released it's hold upon her ears and nose, and the final eye tooth broke through it was like we had a different child. She was so happy! She started babbling again. Her favorite thing to do right now is to run-walk back and forth through the house. I've been taking her out more now that Little League games have started and she loves it! She can march around on the black top at school or play with the grass. She's not running her mouth on the ground any longer so I feel comfortable setting her down and letting her go. I've also pulled out the "activewear"... (the denim) so that she can get dirty and not destroy her good clothes. With the warmer weather I've been opening the doors and letting her run around on the deck and she loves it! I've decided that I need to get her out to see her own kind, so we've been to the park, for walks and yesterday to a Music Together demo at the library. That's a pretty cool program and I think she liked it, but she wasn't engaged with the activities... she loved having a rattle and a scarf to run around with. But while all the other children sat with their mommies she kept trying to run off.

I wonder if she's getting sick again (sigh) or there are hills and valleys in this attachment process. The wall came down briefly and now she's building it back up. Kevin was away for 2 nights and I wonder if that had anything to do with it. I've been the one to put her to bed at night so I wouldn't think that it affect her too much but I don't know. When he gets home at night he has so much energy with her and plays with her with enthusiasm that I can't seem to muster. (I have to pace myself or I won't make it through the day! Can you say even-keel?) So perhaps she missed that. But this morning she's already asleep at 9:15 am after being whiny and avoiding me for two hours this morning. I hadn't "worn" her in the ergobaby for a while so I stuck her on my back to make the kids breakfast and then again later when she was fussy. She fell asleep so that tells me I've either exhausted her with activities or another bug is coming on.

I did something this morning I probably shouldn't have done. I finally pulled out the videotapes I have of the twins when they were this same age... 18 months. Can you say, "Night and Day?" They were responsive to their names. They were laughing. They were naughty. C was trying to talk with great inflection in his babbling. There was eye contact. And I was 6 years younger. Was I a different mother to them? Or is it that M is just a wholy different child? When bringing home an adopted child to a family with older siblings that have been raised since birth... is it not even fair to make any comparisons?

Alarmed at the difference between M with C and K, I resolved to bring out the big guns. I immediately went to the phone and called the Early Start program. No more mincing around because she seems like she's making progress when she's happy. It's not enough. I'm pushing for an evaluation now. I then gave another call to a child psychologist that I'd been trying to get ahold of. Divine providence intervened... she picked up the phone!! We have an appointment to go see her next Monday with M.

I know that there are ranges in development with toddlers. I've seen talking, command-obeying 17 month olds at the park that blew me away. I also saw quiet, non-participating 17-month olds at the music session. But as I slyly always sneak in the "So hold old is your little one?" so I can make my comparison... it seems that the connection between that mother and child is more defined than we have with M. Give me patience, give me consistency and give me all that is love.

The videotapes were hard to watch... it was hard to watch C and K at that age because they were so adorable! They are adorable now but not quite as innocent as babes. And it was hard to see our favorite dog, Kona, who we lost only a few months after the film was taken. And finally my grandmother was there on tape, sitting in her chair with her glass of wine, chattering with the twins. We are so blessed to have experienced the love of that time. I only want to give that to M too.

Looking forward to a good day today!