Adoption Bloggers Interview Project

Next month I'm going to be participating in the Adoption Bloggers Interview Project in honor of National Adoption Month. I'm very excited to get acquainted with a new adoption blogger and to be able to highlight their blog on mine. If any other adoption bloggers are interested in participating there is still time to sign up. Just click on the button at the top of my blog and fill out a registration form and you'll be contacted with the name of your partner.

Speaking of National Adoption Month. . . . I was searching the online card catalog at Hannah's school library and I realized they only had 2, count them, 2 adoption related books and neither of them were current or what I would call quality adoption books. Think using the words "real mom" and "gave her away". So, I decided that rather than complain about it I should do something about it. I emailed the school librarian and offered to donate some quality adoption books to the school library. She was very responsive to this idea and so I set about purchasing copies of some of our favorite adoption books and also one I had heard good things about, but never read. The books we bought were How I was Adopted by JoAnna Cole, Tell Me Again About the Night I was Born by Jamie Lee Curtis (this is one of my favorite), A Mother for Choco by Keiko Kaza, and Lucy's Family Tree by Karen Schreck. The last one was the one we'd never read before and I must say that after reading it I'm glad I bought it as it has significant importance to school related personnel in handling adoption. How about you? Do you you have a favorite adoption book you'd like to share? I'm always up for good book recommendations!

Photo Notes: I just found these pictures on a memory card in my purse from MAY! They are of Hannah and her birthfamily when we visited on our way out to Nebraska from Rhode Island. The first one is of Hannah and her birthsister, Kayla, and the second one is of the two of them with their Grandpa Charlie.

Auditory Sensitivities

It's interesting how when you are consciously thinking about something you notice that thing everywhere. Of course, whatever it is, it was always there in the same amounts, but you just didn't see it.  Like how a woman who desperately wants to get pregnant or who has recently had a miscarriage notices pregnant women everywhere. Or, how when we first started suspecting Hannah had Asperger's I started seeing people on the spectrum everywhere I looked.  Well, the past few weeks as I've been thinking about SPD and all the strategies we use to help Hannah overcome it's challenges I've been noticing others out in the community who probably also have SPD or at least show marked sensory sensitivities in one area or another.  For example, the other day at the mall we were walking along behind a family of 3-a mom and a dad and a son around age 10.  The mom and dad walked hand and hand together while the boy walked several feet ahead of his parents running his fingers along the walls and store windows.  He was aware of his parents though because he periodically checked over his shoulder at them and when they stopped, he stopped or at least slowed his pace.  The besides the sensory seeking of touching the wall, the other noticeable thing about this boy was that he wore sound canceling headphones-the kind you see people at racetracks wear.  He wasn't wearing your garden variety earphones in his I-pod. These headphones had one purpose and one purpose only-to block out sound. It appears they were doing their job well because the mall was quite loud and he seemed perfectly content to cruise around with his parents.  Then, today we were at McDonald's and a young woman and her parents sat down at the table next to us.  Besides obvious physical disabilities (she was in a wheelchair and had limited use of one of her hands), it was clear to me that she too had some auditory sensitivities because she spent much of the time during the meal with her fingers in her ears.  She would take a bite or a drink and then immediately place her fingers back in her ears.  She wore an almost pained look on her face and you could tell the whole experience was quite stressful for her.  While I didn't consider the restaurant terribly loud, at least not the way McDonald's can get on a Saturday at lunchtime, because I have been thinking about sensory sensitivities lately I stopped and listened for all the things I DIDN'T hear. Then, I heard it-the ice machine clunking, the lights humming, the chairs scraping, the crackle of wrappers, the hum of conversations, the occasional baby or toddler shrieking. It was all there and no doubt it was quite overwhelming to her.  Hannah was fine with the main restaurant, but I knew our time was about to come because we planned to visit the play place.  It was raining and yucky outside so the play place was packed.  As soon as we walked through the door the chaos and noise hit us.  Hannah stiffened and I knew we wouldn't be there long.  The poor thing tried to tough it out because she absolutely did not want to go back home and nap, but there was no playing going on and she was clearly uncomfortable so we left quickly.  It was interesting to me how there were two people with auditory sensitivities right next to each other, but the noises that were bothersome to them were quite different for each of them. That just illustrates how individual SPD can be and why it can be so hard for teachers, family members, and strangers to understand what our kids struggle with even if they already know someone else who has SPD. I guess that's why awareness is so important. Each new person we make aware is one more person who will hopefully be more understanding the next time they notice puzzling behavior by someone they think is inappropriate or overreactive.

My Little Terrorist

While I've often complained that the airline industry took security as far as what was and was not allowed onto a plane a bit far in the post 9/11 aftermath, I now believe they were completely justified in banning toenail clippers from carry-on baggage. They can (and have now been used in my house) be used as a terrorist device. Confused? Remember this post? Apparently I should have been more specific in my post "beautification" lecture. Instead of stressing that she should NEVER cut HER hair with SCISSORS, I SHOULD have hammered into her little brain that she should NEVER EVER EVER attempt to cut ANYONE'S hair with ANYTHING. Are things becoming clearer now? Ready for the full story? Lately I've been even more exhausted than usual so Hannah has been allowed to come into our bedroom when she wakes up and watch PBS until I'm coherent enough to tackle the day. This morning I was struggling more than usual with getting myself moving so apparently Hannah tired of TV and decided to make her own fun. I felt her climbing around me, but didn't think too much of it. Then it felt like something pulled my hair. I opened my eyes to find toenail clippers poised less than an inch from my eye being wielded by a newly turned 3 year old! I was so startled I bolted upright and nearly knocked Hannah off the bed. Once I recovered I asked her what she was doing. She calmly replied, "I'm cutting your hair, Mommy." Seriously, do other people's kids do this or am I the only lucky one?

Lately I've been doing battle with the local school system (while simultaneously researching private preschools in case I lose) since they have deemed Hannah too high functioning to qualify for their preschool unless she scores poorly on their language pragmatics test they want to perform next week. The problem I have with this is that only one person on the eligibility team has seen Hannah in the environment that gives her so much trouble. Not only that, but the observation lasted only 30 minutes and was during a highly structured group circle time that required little to no peer interaction of Hannah. When I discussed my concerns that although Hannah is highly capable of using advanced language, she is unable to do so with peers even when she is distressed and wants a child to leave her alone and the only word she need utter is "NO" in order for a teacher to intervene and her therapists reiterated this concern many times over, the eligibility team assured me that if there really was a problem then it would show up on the language pragmatics test they intend to administer. Um, I'm not a speech pathologist, but I DO know my daughter and I'm positive that she'll ace whatever language test they give her if it's administered one on one by an adult. It's not that Hannah doesn't understand HOW to use language. Her problem is the practical aspect of using that language effectively (or at all) with peers or often even with adults when she's in a socially overwhelming social environment. Whether they choose to believe it or not, those who really know Hannah know this is a problem. Though the defender of justice in me wants to make them provide her with what I firmly believe that by law she is entitled to, I'm growing weary of this fight and I'm not altogether convinced that this classroom (taught by the person who observed her for 30 minutes and proclaimed to know all about her) will be the best place for her. I'm not sure that this particular teacher will be able (or possibly willing to after all the fight I've put up) to meet her needs IEP or no IEP. I've found a private preschool near our home (recommended by her speech therapist) that seems like it would be a perfect fit. It's fully inclusional, has OTs, PTs, SLPs, and a nurse on staff, and is taught by the teacher that USED to have the job of the lady who observed Hannah and who would teach her class should she qualify and attend the school system's program.

As Hannah becomes more and more willing to and interested in interacting with other kids I've begun to notice a troubling pattern. Take today for example. Hannah and I walked down to the beach to play in the sand. Shortly after we arrived a father and his two daughters (aged 4 and 5) showed up to swim. They tirelessly engaged with Hannah until they finally broke through her defenses (aided I'm sure by all the sensory input the ocean provided!). All of a sudden Hannah was playing happily with the girls. As she became more comfortable with the girls she swung 180 degrees from refusing to interact to completely being in their faces and just generally being too close and not respecting their personal space. It wasn't long before the girls who had been actively trying to get Hannah to play with them were now trying to get away from her and Hannah was clueless as to the change of events. I felt so bad for her. She really thought they were all having fun. I tried to remind her to give them space, to not shout in their faces, to keep her hands to herself, but she just couldn't understand. They wanted to play with her. They were being nice to her. Why shouldn't she play with them in the only way she knows how? I see this pattern happening over and over again. Nearly every time Hannah manages to break out of her anxiety and make an initial connection with another child, it almost always begins to go south as she becomes more comfortable and attaches herself at the hip to the other child. Right now she doesn't get it that these other kids don't want to play with her anymore, but what I'm worried about is that if we can't teach her how to sustain the initial positive interaction she will eventually begin to notice that kids don't want to play with her and be hurt by it. I just don't want to see that happen to my little girl. What I don't know is how to teach her how to do it and how long I have before she starts to notice when the kids don't want to be around her. So, for all you veteran parents out there, how old are kids usually before they start to notice what other kids think about them?

The Tie-Dye Project

Last May a kindergartner named Alex Barton was voted out of his classroom based on a suggestion from his teacher because his Asperger's Syndrome made him a nuisance in the classroom and landed him in the principal's office often. His mother Melissa started the Tie-Dye project to help connect kids across the world with Autism Spectrum Disorder. Hannah received a T-Shirt from Nigel from Oregon last week and was thrilled. She wants to meet him and play with him! The way the tie-dye project works is after you receive your shirt, you make 5 more shirts and mail them out to other kids (or adults, since adults need love too) on the spectrum. Hannah has 4 t-shirts left to give out. If you or your child would like a shirt please leave me a comment on the blog with your email address and I'll contact you to get your mailing address and t-shirt size. Hannah is really excited about making shirts for other people so please don't be shy about asking for one since I'm worried we don't know enough others on the spectrum who don't already have a shirt to fulfil the 5 shirt requirement.

First House Guest

We had our first house guest here in Rhode Island this past week. My dad came to visit on Sunday and stayed until Friday. Hannah was so happy to see her Grandpa and it was nice to see a familiar face. We did lots of sight seeing and got to see a lot of neat things. Hannah loved the Mystic Aquarium which she consistently refers to as the "accordion" :) It's a smallish aquarium and we went mid week before the local schools were out for the summer so it was a much nicer experience for Hannah than it potentially could have been if it was crowded. She did quite a bit of running around and dragging us from exhibit to exhibit. We also finally checked out some of the local beaches. We've been to the beach here by our house loads, but we decided to travel to the big beaches along the coast instead of just the bay. Hannah had a blast running up and down the beach and loved the excitement of fighting to stay upright as the waves crashed against our legs. She wore herself out so badly that day that she fell asleep in her car seat on the way home with goldfish crackers in her mouth and still chewing!

Lately Hannah has been doing a fantastic job socially. She's been engaging with other kids her own age, initiating play, and responding appropriately when approached by another child. It's just been so fantastic to watch her blossom these past few weeks. She has been doing such a fantastic job in fact that I had begun to consider the possibility that she was just a late bloomer socially. Maybe the doctors had gotten it wrong when they diagnosed her with asperger's. Maybe all those people who insisted time and time again that she was just quirky and shy were right. All this fell just on the heels of our first meeting with the local school system where they pretty much told us that they didn't feel Hannah would qualify for any services because she tested too well on their academic tests and she was considered too high functioning. BUT THEN yesterday happened and I was painfully reminded exactly why the doctors have it right. Yesterday we went to our city park beach. The weather was beautiful and Hannah was pumped to be out in the sand and water. As luck would have it, there happened to be 3 other 3 year old girls near us on the beach who wanted to play with Hannah. One little girl repeatedly tried to engage Hannah with no success. The poor little girl was so confused and I think possibly a little hurt. Several times I tried to prompt/coax Hannah into playing with the girl or at least playing beside her, but Hannah could pretty much care less about the other girl. Occasionally I'd prompt Hannah to share something she was doing with the little girl and Hannah would obediently do so, but it was much more like talking at the girl with no concern over whether or not she was listening or even looking at what Hannah was showing her. There were several times when the little girl was talking to Hannah and Hannah would just start telling the other girl about something completely unrelated to what the girl had been trying to talk to her about. The thing was though that Hannah was blissfully happy. She wasn't missing this girl's companionship at all. She was perfectly happy doing her own thing. Still my heart broke. She had been doing so well socially that this felt like a huge kick in the teeth. I've been thinking about it a lot today and I've been trying to figure out why it made me so sad since Hannah was obviously enjoying her time at the beach. Was I sad for Hannah because she was missing out on a potential friendship (or at the very least playmate for the afternoon) or was I sad for myself that Hannah marches the beat of a different drum and I'm constantly having to explain that to other parents when they see their children being ignored, brushed aside, or viewed as fearful dangers by Hannah? Maybe I'm sad for a combination of both reasons. Who knows.

Hannah has been doing some amazing (to me anyway) things lately that I had no idea that she was even close to doing. Academically she had seemed to have hit a plateau and hadn't had much interest in reading or writing and I hadn't pushed it. Then, just this last week she sounded out the word "ballet" and spontaneously wrote the numbers 1-4. I know she actually sounded out ballet and didn't just recognize it from another book because she pronounced the "t" at the end. As for the numbers, it's been probably 6 months or more since we've even attempted to write any numbers and then all of a sudden she wrote perfectly recognizable attempts of all four! Then tonight she did something that was a bit odd, but slightly amazing as well. She had some fruit on her plate and one piece was significantly larger than the other. She pointed at the smaller of the two and said "muhroona" small and then pointed to the bigger piece and stated "burawnka" big. It was like she was presenting a vocabulary lesson for a foreign language to Kyle and I only this language was one of her own creation. She's always making up nonsense words, but she's never before paired them with any meaning, at least not that she's ever told us.

PS. By looking at that last picture can you totally tell that autism lives at our house?!? :)

What We've Learned

For those of you who are new to the blog, I'm going to give you a brief rundown of our story, Hannah's story and then I'll go into my thought for the day about autism and link to another one of my favorite autism blogs.

Hannah is 2 1/2 years old. She has Asperger's Syndrome (on the autism spectrum) and Sensory Processing Disorder. Hannah is extremely high functioning and also very bright. She began reading at 2 years old and has a crazy vocabulary. People often have a hard time believing that she has autism unless they've spent a lot of time with her and know her very well in multiple situations. Though this is wonderful because it means that Hannah is high functioning and that she is coping relatively well with her challenges, it also leads people to be less tolerant when she is having challenges because instead of seeing a child with special needs who is struggling they see a child who appears to be older than she really is (drat that big vocabulary and the 95th percentile in height!) who is behaving unacceptably in their eyes. They see a child who is spoiled and who needs more discipline. They see a child who is rude. They see parents who allow this misbehavior to continue. They see parents who coddle their child.

This leads me to what Hannah's Asperger's and SPD has taught me. I've learned to be less judgemental and more tolerant of other children and parents. I've learned that there just might be more going on than appears on the surface. I've learned that maybe that parent or that child is doing the best they can and maybe they could really use an understanding smile and an offer of help. Every time I get that "look" in a restaurant or store I think about how I used to feel before I was a parent when I saw a child in the midst of what appeared to be a tantrum and I think about how I've come full circle. I won't lie and say that I don't occasionally get angry at the "giver of the look" for thinking anything other than wonderfulness about my daughter, but in general I just feel sorry for them because they have no idea, no idea what it's like to parent a child with challenges outside the norm of a typical child and ignorance is never a good thing. That's why it's important for us to raise awareness, but not awareness in the way that the media and several high profile organizations do using scare tactics and sensationalism. Not programs and articles warning parents of the evils of vaccinations or the blame and finger pointing, instead we need awareness of what it's really like to live with autism in all of it's forms, from the mild to the severe. We need awareness of how individuals with autism (and the people who love them) feel when they are ridiculed or discriminated against. We need awareness about the fact that many families cannot afford the therapies that would most benefit their child because many health insurance companies do not cover therapy for developmental delays. We need awareness to the fact that there is little support out there for adults with autism to lead productive and independent lives. We need awareness about the fact that those with autism are often excellent employees because of their attention to detail, respect for the rules, and intense loyalty and should be sought after for employment instead of shunned in the workplace. What we need is awareness that if the world was just a little more tolerant of all kinds of differences then we'd all be blessed beyond belief through the relationships we could form if we gave them just half a chance. Now, what you've all been waiting for, another one of my favorite blogs Diary of a Mom. If you want to hear some real inspiration check out this post and this one and this one that she wrote. She frequently brings me to tears with her eloquent tales of life with her two daughters, one on the spectrum and one not.

Now, moving on to the point of this blog, Hannah! Since the move (well always really, but especially since the move) Hannah has been having a difficult time with all the transitions that occur throughout the day. Simple things (to me anyway) like just getting out of bed and getting ready for the day, stopping an activity and sitting down to eat, getting ready to leave the house, and going to bed really throw her for a loop. Because these are all things that happen pretty much every single day, it's been a huge roadblock in our life. So, we've started using picture schedules to get her through some of the rougher spots in her day. The early intervention agency printed up and laminated for me some picture symbols (affectionately called PECS by those in the special needs world) that stand for the individual steps needed to complete the routine that is difficult for Hannah. I cut them out, put Velcro on the back of each square and attached the other piece of Velcro to a clipboard. Now as Hannah completes each step of the process she pulls off the task and starts on the next step. Though Hannah is able to remember and verbalize all the steps needed to get through each routine, she has trouble actually focusing and staying on task long enough to complete them without going into a meltdown. This schedule helps her visually track what she's done and what she still has left to complete before she's "free" to do her own thing. It lets her see that the end really is in sight if she can just stay on track. If she makes it through the entire schedule (for going to bed the tasks are PJs on, brush teeth, wash face, brush hair, go potty, get into bed) and is compliant with each step and no meltdowns then she earns a penny to put in her money bag. Once she gets 25 cents then she can use her money to ride the horse ride at Walmart. So far we are seeing more compliance and a greater sense of responsibility with the picture schedules. They aren't a miracle cure, but they do seem to be helping. Tomorrow we meet with the autism specialist, whom I've been calling the autism whisperer-a term I ripped off from Mama Mara another fabulous autism mom blogger, for the first time. I am cautiously optimistic that she will be able to give us some insights into Hannah's behaviours and some ideas on how to make her more successful as well as more at ease in social situations. The bad thing is that the meeting is at 11:00am, lunch time for Hannah. The whisperer is only at the center twice a month and every other available time slot was booked for the month. If we didn't take this appointment then we'd have to wait until May to have our first meeting and I really didn't want to wait that long, especially since we only have until July (when Hannah turns 3) to make use of her services. I want to be able to suck every last bit of knowledge out of her head that might be helpful for Hannah that I can while I have the time. Please keep your fingers crossed that I have success altering Hannah's eating schedule so that she will cooperate during the appointment.

Yesterday Hannah experienced what may just be her idea of the best day of her life. We started off the morning by going to the mall. She loves to people watch. She's all about people in theory. She loves to observe them from afar and even interact with highly approachable adults. It's just kids that she doesn't want to interact with. She got to get her feet measured at the shoe store and tried on practically every shoe in the store while we waited. She adores getting her feet measured and trying on shoes. I'm not sure what the appeal is, but hey, it's good cheap fun. Then we had lunch at the food court. She got to do some more people watching and even see a birthday party in progress. The food court at this particular mall has a full sized indoor carousel. Hannah had never been on a merry-go-round before, but desperately wanted to give it a try. We decided to let her have this special treat and she was in heaven. We haven't seen her look so relaxed since we moved. The constant up and down motion of the horse and the spin of the carousel was just what her body was craving. We ended up letting her ride it twice. After the mall we headed to the local zoo. It was a free day for city residents so even though it was cold and windy we decided to give it a try. Hannah is a definite animal lover so she had a blast at the zoo and we even got to watch two snow leopards fighting and see the elephants come when they were called by name by the keepers when it was time to close the zoo for the night. After the zoo we explored the park further and found that it had an amazing playground and ANOTHER indoor carousel. Our zoo pass got us a free ride on the carousel so Hannah got another turn on the merry-go-round as well as some much needed heavy work on the playground. After the playground we came home and had dinner then headed to the pool to try out her new arm band floaties. She was cautious at first about not having something or someone to hold onto in the pool, but soon grew to like the freedom it gave her to move around in the water unassisted. All in all she had a great day and ended up falling asleep before I even left the room. I truly believe it was her idea of a perfect day.