Adoption Interview

Adoption Bloggers Interview Project 2012

Sunday, April 26, 2009

Nurtured Heart Update and other Random Stories

We are now a month into the Nurtured Heart Approach and fully implemented as far as all the steps go. It has been very interesting for me to see the changes that occurred in Hannah even after beginning the very first step. For those who don't know, the Nurtured Heart Approach is all about giving a ton of energy for every little success and no energy what so ever when negative behaviors are happening. The first several steps are all about what they call Time-Ins. Time-Ins are all the positive attention you give to your kid whenever things are going right. This is basically all the time that a rule is not being broken. The thought is that kids learn that breaking the rules gets a bigger payoff (more of our energy even if it is negative energy) than following the rules. When we started recognizing Hannah for just random moments throughout the day in which she was not breaking any particular rules she really started to perk up and actively tried to do things that would get more of our attention. We implemented all of the Time-In steps for several weeks and then moved on and introduced the final two steps, the credit system and consequences, together a week ago. The gist behind the credit system is that the child earns credits for not breaking the rules and for displaying certain positive behaviors you value as well as by doing certain chores and responsibilities. Credits are not taken away for breaking the rules, instead only partial credit is earned for any given rule where that rule was broken during the day. Each day starts over with a clean slate as far as earning potential goes. Those earned credits are then used to purchase basically everything in the child's life that is not food, clothing, or shelter. For Hannah she has to buy TV time, playtime, outings, bedtime books, etc. That has taken a bit of getting used to for me, but it seems really motivating for Hannah. She loves her credit review time at the end of each day and she's really getting into counting out her money each time she goes to purchase a privilege. The consequence step is simply a time-out. They call it a reset. A reset is the consequence for any broken rule (except for in very serious cases, but I'm hoping my 2 1/2 year old won't venture into those waters) and lasts only a brief period of time as long as the child is quiet and calm during it. At first Hannah was quite hostile during her resets and they lasted a long time. Other times she refused to take them and was charged credits for the privilege of being helped to complete her reset. For the first 4 days or so of starting the credit system and the consequences, Hannah had no credits left at the end of the day for any bedtime privileges because of being charged for her resets and this affected her deeply. Then one day it finally clicked in her mind that the reset would be over faster and she wouldn't lose any of her credits if she just walked over and took her reset. Once she began doing that we found that the reset really did serve as a reset to her behavior. After only a few seconds of reset we were able to release her from the consequence and the problem behavior was over and she was back in a positive frame of mind instead of spiraling out of control which is what usually happened with any other form of discipline. The change in her behavior really has been amazing. Though today was a rough day, it was nowhere near what it could have been if we were using any of the old methods we have previously tried to manage Hannah's behavior. I am pleasantly surprised with the results even though I was quite the skeptic while reading the book. I was pretty desperate for something different though so I was willing to try just about anything that I didn't think could actually do my daughter any harm. If you've tried everything and just don't seem to be getting anywhere and you are frustrated and your child is frustrated then I highly recommend checking out the Nurtured Heart Approach and possibly giving it a whirl. I was pretty skeptic, but it seems to be working amazingly well for Hannah.

Now for a few Hannah stories. Last week Kyle was out of the country traveling for work and Hannah was really out of whack because of it the first day he was gone. We were only 3 days into the credit system and consequences of Nurtured Heart and I was still getting used to the new way of dealing with problem behaviors and having a hard time resisting giving lectures or more severe consequences for what I considered worse infractions. At one point we were playing with Hannah's pattern cards and she had to go to the bathroom. She wanted to take one of the counters/pattern blocks, a yellow school bus, into the bathroom with her, but we have always had a pretty strict No Toys in the Bathroom rule. When I told her that she could not take the school bus with her she glared at me, grabbed the bus and bolted to the bathroom. I was after her like a rocket, but I was sitting on the floor and it takes me a bit to get up and she had a head start so she beat me there easily. Just as I was rounding the corner to the bathroom I saw her (imagine a slow motion movie scene here) chuck the bus into the toilet and flush before I could stop her! I was so angry I wanted to scream! However, Nurtured Heart says absolutely no negative energy to negative behaviors and the same consequence calmly given for any infraction. So, instead of lecturing, picking her up and plopping her butt in time-out, or even showing with body language that I was angry or acknowledging what action she had done that was wrong, I had to calmly and neutrally say, "You broke a rule. Time-out," and then never mention the infraction again after the consequence had been served. It was so hard for me to let that go because I get very anal about keeping all the pieces of a toy together and there are very rarely lost pieces of anything in our house. When Hannah was younger I used to count all the pieces of every single toy as I cleaned up each night and if a count didn't come up right I knew immediately what piece was missing and would not stop searching until I found the missing piece. So, for Hannah to purposely lose a piece of one of her toys, it felt like she had thought to herself, "what could I do that would make Mommy pay the most for not letting me have what I want?" and then putting her plan into action. Isn't that insane of me to think? What's worse is the fact that I was more angry about the fact that that stupid yellow school bus would forever be missing from the set and that every time we tried to do a pattern that required the yellow bus we would not be able to complete it and I would be continually reminded of the incident than I was angry that she had disobeyed me, ran away from me, and flushed something she knew did not belong in the toilet down the toilet. All of the things that she did wrong in that incident and I was more concerned about the stupid bus! What kind of horrible Mommy does that make me? I managed to keep my cool though. I showed no emotion (at least I think I didn't) and I calmly informed her that she had broken a rule and to go to time out. As one final stab in my back, instead of fighting the time-out like she had been doing, Hannah blithely turned on her heel and practically skipped off to time-out like it was no big deal! Are you kidding me?!?! It was like she was conspiring to drive me crazy while Kyle was away and I had no respite. She completed her first time-out/reset sans resistance for an action that I desperately wanted to punish her for. I wanted a reason to charge her heavily for her time-out, to make her pay for the mental anguish she had caused me by flushing that bus, but if I was to follow the plan I couldn't. How childish and insane is that of me to want to make my 2 year old pay for losing one of her own toys? Surely the fact that she would no longer have the toy should have been enough. It wasn't though. I wanted restitution as crazy as that sounds. During her reset, I took a reset as well and God showed me how immature I was being and helped me see some of the changes I needed to make as a parent to parent Hannah in a more Biblical manner. He also taught me about forgiveness with this incident. Hannah paid her consequence by doing her reset and I was not to bring it up again. She was completely forgiven. Just as Jesus paid our consequence for our sins by dieing on the cross and we are completely forgiven. God will never bring it up again. As parents we are to strive to love our children as Christ loves us and that means parenting biblically. God definitely uses the Nurtured Heart Approach as he parents us and I think that as I take a closer look at how God treats me then I can see just why the Nurtured Heart approach is working so successfully with Hannah. We screw up, we ask for forgiveness, forgiveness is granted unquestionably as long as we mean it (AKA we comply with our consequence), or we make bad decisions and God withdraws his peace from us (removes His energy), obedience brings us blessings beyond anything we could imagine that we might want (lots of credits earned for good behaviors and not breaking the rules), lather rinse and repeat as often as we screw up or obey-each day is a clean slate with endless potential for obedience and success. Yes, God is truly Transforming the Difficult Child by using the Nurtured Heart Approach on me.

The weather here has been absolutely glorious. Friday it was in the 70s, Saturday the high 70s and 80s and today it was actually in the 90s! Consequently we've been shaking off our cabin fever and getting outside. Friday Hannah and I went out exploring to find a new park. Rhode Island is odd in that most parks don't seem to have playgrounds. They seem to value large open green space more than play equipment. That's all well and good. I like nice green space, but when you've got a 2 1/2 year old with SPD that desperately needs a swing it can get annoying! We found a beautiful park with an interesting playground situated along the water's edge. The playground was packed since everyone wanted to enjoy the beautiful weather. The weather was such a change from what we had been experiencing that the news crews were out in force interviewing people about what they planned to do with their weekend. AND guess who they chose to interview at the park?!? Hannah and I earned our 10 seconds of fame by being featured on the evening news! Here's the link if you want to be jealous of our new found celebrity status! Just click play to watch the video. Unfortunately you'll have to watch a commercial before you get to the actual video. I'm the one in the pink fleece jacket and Hannah's the kid in the flowered sun hat on the swings. Saturday we went exploring again, this time with Kyle in tow since he was home from England and found an awesome park and beach. We walked up and down the shore picking up shells and tossing them back into the ocean. It was awesome. I've never seen so many shells in all my life. It was actually more of a challenge to find a spot on the beach to walk that you weren't stepping on shells than it was to find a shell. I think I had as much of a blast digging through the shells as Hannah did. I can't wait until the water temperature catches up with the air temperature so that we can go wading or swimming as well!

As we prepare to close on our new house on Wednesday (YEAH!) and have our things delivered on Friday, we've been trying to prep Hannah the best we can about what will be happening. While I'm so excited to be getting out of the apartment and into our house finally, I dread the transition of moving AGAIN and having to start from square one with Hannah again. At least this time some things will remain constant. We can go to the same parks, she'll have the same therapists, we can eat at the same restaurants, attend the same church etc. Still, it will be another big change and there will be lots of chaos as things are being unpacked and organized and there will be little time and attention to give to Hannah as we direct the movers and unpack the essentials. I'm bracing for another rough several months (just as things have begun to settle down a bit). I worry about the stress this will put on my little girl so soon after the stress of our initial move. Once again, I know the end result will be positive for Hannah because she will have more space to move around, can run and jump and crash into things at will, her swing set will be in the back yard and we can set up her sensory play room again, but we have to survive all the rough stuff before we can reap the benefits of the move. Please pray for us if you will that we will be able to equip Hannah with the tools she needs to cope with the very big changes ahead of her and that we will not just realise intellectually that we need to be patient with her, but that we will be able to put that patience into practice.
Here's my autism blogger of the day, ghkcole writes at Rooster Calls about her life as a mother, teacher, and wife. She's the mother of two children, Rooster and Peaches, who currently attend the same school that she teaches at. She shares the struggles she has as a full time working mother juggling the demands of caring for her two children, fitting in all of the therapies that Rooster attends, meeting his needs when he's having a rough day while still completing the requirements of her job, and giving Peaches a chance to be a regular little girl outside of the shadow of Rooster's autism. Her posts are always honest, thought provoking, and easily relatable to. I highly recommend stopping by and reading a few. If you only have time for one post, this particular one highlights the struggles that so many families with special needs children go through just to make things work and get through a single day.

Monday, April 20, 2009

I Have a Question

Lately Hannah's been saying, "Mommy, I have a question. . . . " and then proceeding to either ask me something or tell me something that is on her mind. Sometimes she uses it as a stalling technique to delay doing something she doesn't want to do, but other times it's just her lead in to tell me what is rolling around inside her little head. The cute part is that before each new question or thought that she wants to tell me she repeats, "Mommy, I have a question. . . " Tonight before bed she asked about an unusual sound we heard coming from the apartment next door, decided it might be either a dog or a wolf, asked where wolves live and when they live there, asked if wolves lived in apartments, if they just lived in forests at night, why they also lived there in the daytime, told me wolves were like dogs, but they were scary, that wolves howled and woke up bunnies (have no idea where the waking up bunnies part came from), and finally declared that wolves were cute and that it was most definitely a cute wolf next door that would wake up a bunny and her when she tried to sleep. All this transpired just in the space of brushing her teeth and washing her face and of course before each new segment came the words, "Mommy, I have a question. . . " She even pauses for dramatic effect which cracks me up.

Yesterday at church Hannah had a fantastic day. She sat quietly and read her Bible or colored during the whole first part of the service before they released the children for children's church and then walked by herself with the class over to the other building where their classrooms are. After church there was a whole congregation lunch and hymn sing. Kyle told Hannah to find one of her friends to sit by. She immediately said, "I want to sit next to Jasmine." I was blown away. She actually chose a child to sit next to and then when we walked over there she really did want to sit right next to her. All throughout the meal she chatted with Jasmine and colored with her and shared her books with her. At one point Jasmine turned to me and said, "Can Hannah come to my house and play?" Hannah just got asked on a play date by another child!!!! It wasn't orchestrated by me or Jasmine's grandma, JASMINE asked if Hannah could come play and then several minutes later she asked Hannah, "Hannah, will you come to my Ariel birthday party?" (Jasmine will be 5 next month) and Hannah answered, "Sure!" I was almost in tears. During the hymn sing, Jasmine asked to sit next to us and she and Hannah read her Bible and Hannah's church social story together and Hannah kept scooting over closer and closer to Jasmine and then she started giving her hugs! She must have given her 15 hugs! Then she said, "I love you Jasmine." and kissed her on the arm. Jasmine just smiled and they both giggled. Then Hannah, sensing acceptance pushed it a bit too far and kept on hugging and touching Jasmine over and over and finally Jasmine had had enough and moved to sit next to her grandma instead of Hannah. She must not have held it against Hannah too much though because when it was time to leave she waved at Hannah and said she'd see her next week. I was so happy for my little girl. I think she has a genuine friend. We'll definitely have to continue working on boundaries and appropriate touching, but it was a big thing for her to even want to touch or show affection for someone other than family and an even bigger deal for her to do it unprompted. We worked for almost 2 years to get her to hug her best friend from Indiana either prompted or unprompted so for her to just decide to hug (repeatedly) a girl she has only known a month and only seen on Sundays was a HUGE deal.

Today Hannah had both speech and OT. At speech this morning the SLP gave her a standardized language test that they need to pass along to the public school system once she transfers out of early intervention at 3 years old in July. Hannah did a fantastic job and scored well above age level on the test. It was funny because Tracy, her SLP, was giving the test without even looking at the testing booklet until she reached a certain part and then she said, "In all my years working here I've never made it past this part. I'm going to have to read the book now!" She intended to test Hannah until she hit the ceiling of the test (basically maxed out as far as what she knew), but Hannah grew antsy and needed a break before that since she'd been testing for almost an hour straight and we were also out of time for her session so Tracy just ended the test there. When she stopped Hannah was at 4 years 7 months. Tracy said that she guessed (in her professional opinion) that Hannah would have maxed out at 5 or 5 1/2 years old! She's only 2 1/2! That really blew my mind. I knew Hannah was ahead of other kids her age verbally and even had an inkling that she was way ahead of other kids, but I had no idea that she was light years ahead of the curve. Three years ahead in language skills is quite a bit ahead I would say. The interesting thing is that although verbally Hannah has such a firm grasp on language, she has very little ability to decode (or even notice) nonverbal communication (this doesn't count sign language though, she's quite good at sign). Another thing Tracy discovered that she said is very typical of people with Asperger's is that she interprets language very literally. Idioms, metaphors, sarcasm are things that she will probably have trouble with down the road. She already displays a below average grasp of idioms. For example, Hannah coughed a really nasty sounding cough (remnants of the pneumonia) and Tracy said, "Do you have a frog in your throat?" Hannah looked at her like she was an idiot and said, "No, I have a cough in my throat." She was dead serious. Tracy explained to me that while at Hannah's age she wouldn't be expected necessarily to know exactly what "a frog in your throat" meant, she should understand that Tracy did not mean did she literally have a frog in her throat. We've noticed Hannah's literal interpretation of language for a long time, but never thought too much about it. I always just figured that it was developmentally appropriate for her age and left it at that. Apparently not in all the cases.

At OT Hannah got to try out several of the swings they had in their OT room. Kyle and I had planned to buy Hannah one of the therapy swings once we got settled into our new house and had even picked out one we thought would be good for Hannah. It turns out that they had that exact swing, along with several others and they let Hannah take them all for a test drive while they did a few informal tests on Hannah to get a sense for where her sensory needs lie. Hannah swung or spun on one of 3 swings (mostly she gravitated towards 2 of them) for 50 minutes straight without ever wanting to stop! They asked me if she can ever get too much swinging or spinning input and I told them that I had never managed to give her enough that she wanted to stop. I always wear out well before she does! I had told them before that she was pretty much insatiable and I don't think they believed me. Now they are definitely believers! For one of the tests they did, the OT spun Hannah very rapidly for several minutes and then stopped her suddenly and studied her eyes. I don't remember all the technical words she used to explain it to me, but basically in a normal person your eyes would continue to shift back and forth for a little while after you stopped until your body caught up with the fact that you had stopped spinning. If your eyes either don't shift back and forth at all or shift for too long then it is a sign that there is something off with your vestibular system. Apparently Hannah's eye shifting was very delayed and minimal. The OT said this explains why Hannah craves that kind of input and can tolerate all that spinning and swinging without getting nauseous or dizzy. When we were leaving the OT's assistant said good-bye to Hannah and asked her if she could see her again next week. Hannah shook her head and said, "No, I just want to see Stacy." Stacy is the head OT. The assistant, Katie, made a sad face and said, "Aww Hannah, that's too bad I really wanted to see you again because you are very intriguing." That made me smile because I thought it was a very good way to describe my little girl. It seems like all medical professionals, therapy providers, and educators find Hannah intriguing in some way or the other and I definitely find her intriguing! She intrigues me every single day!

Yesterday we finished fully implementing the Nurtured Heart Approach to discipline with Hannah. The consequences part of the approach has been rough for Hannah. The past two nights she has managed to spend all of her credits that she had saved up for bedtime privileges (books and song) on refusing to go to or stay in time out and having to be escorted there or helped to stay in the chair. I do think her empty bag of pennies each night has been effective and quite the eye opener for her. She has known each night why there were no books or song and I haven't had to be the bad guy by taking away privileges. She simply hasn't had any credits left at the end of the day to buy any bedtime privileges. It's too soon to say exactly how this is going to work for Hannah, but I have a hunch that it's going to work quite well. I'll keep you all informed on how it goes.

On a positive note, we've had several nights in a row where Hannah has stayed in bed once we left the room. There have been no incidents of intentional wetting, pooping, or throwing up in over a week and screaming has slowed down a bit too. Again, it's too soon to say if this is a definite trend or not. She tends to cycle through rough and easier(I can't say easy, but at least easier) patches of bedtime behavior, but maybe just maybe we are starting to get a handle on this and maybe the surgery actually had the physical effect we were hoping it would have.

Now, for my autism blogger of the day, JoyMama who writes Elvis Sightings. She writes about her two daughters and their life. Her youngest daughter, Joy has autism and is mostly nonverbal although she communicates quite effectively with picture cards and a switch with prerecorded choices programmed in. Her posts are always eloquent and sometimes even heart wrenching. Please check her out. Today I also have another favorite autism blogger to give a shout out to because her most recent post today made me bawl like a big ole baby. I honestly don't know how anyone can read it and keep dry eyes. So, please also head on over and check out Rhema's Hope who writes at Autism in a Word. I can promise you that you won't be disappointed.

Friday, April 17, 2009

Cleaning Frenzy

Today Hannah has been on a cleaning frenzy, however she has managed to instead only make huge messes. Both incidents have occurred in the bathroom and I discovered them after I determined she was taking an awfully long time in there and went to check on her. She may soon be losing private bathroom privileges! During the first cleaning adventure Hannah decided to use lotion to scrub the lid and tank of the toilet as well as the counter in the bathroom. We calmly discussed how lotion is not soap and that she should not use it to clean anything. We also emphasized that if something needs cleaning then she should come tell me. I cleaned up the "cleaning" residue and we went on about our day. Then, during lunch she had to go to the bathroom so I let her go alone and sat and finished my lunch. When I was completely done eating and she had not returned I got worried. I entered the bathroom to see Hannah, with pants down to her knees, dipping toilet paper into the toilet bowl and scrubbing the seat of the toilet! The floor and the toilet seat were soaked and their was an unimaginable amount of paper already in the toilet bowl. I attempted to flush it down, but water went in and nothing went down! I plunged for a good ten minutes to no avail. When I asked her how all the water got all over everywhere she said she scooped it out of the toilet with her hands! UGH! We had another lengthy discussion about not taking it upon herself to clean up anything but her own toys and clothes or something Mommy or Daddy had specifically asked her to do as well as touching upon the fact that we should NEVER put our hands into the toilet water because it could make us sick (and just for those who want to be grossed out, it wasn't clean water she was sloshing around in-it had pee and poop in there along with all the toilet paper!). Her bathroom is now off limits until Kyle comes home and attempts to plunge the huge mass down or we call maintenance to fix it. I'm just hoping I can keep her from doing any more damage today than she's already managed to accomplish. If this were our own house I don't think I would be as freaked out. I'd be frustrated and exasperated, but not freaked out. However, since this is a temporary furnished apartment that rents out for an insane daily rate (one week is more than our monthly mortgage was in Indiana!) I'm terrified she's going to break something that we are going to have to pay to replace or have fixed and we just don't have the extra cash floating around right now to do that. Along that lines, we found out yesterday that someone threw a rock through our dining room window at our house in Indiana. Apparently another realtor called our realtor to tell her because she discovered it when they went to show the house. Now we have to pay to have that fixed before we can either sell the house or take the buy-out. To top it all off, the car wouldn't start for Kyle yesterday evening so Hannah and I had to go give him a jump to get him home. It looks like we need to get a new battery for it too. Everything seems to be happening now when we are trying the hardest to cut back on spending and save money until we get into our house and are able to get reimbursed for all the relocation stuff we had to pay for out of pocket. UGH! Moving really is a pain. I can't wait to get into our new house though. I am super excited for it. Provided everything continues to go as planned we should close on the 29th of this month and be able to start moving in the next day! YEAH!

Ok, so I just got interrupted while writing this. Hannah, in perfect line with her creativity today, decided that instead of sleeping during her nap time she would read. That's normal, but what's not normal is that she decided she needed to pee and instead of calling for me to let her out of her room or just peeing in her pull up she decided to pull her pants down, place a tissue on her bed, and pee on the tissue and consequently also the bed! OMG! What has gotten into this girl today! Where is she getting these crazy ideas? Now I have one more thing to worry about since the bed doesn't have a mattress pad on it. I'm not sure how I'm going to get all the urine soaked up out of the mattress or even how to get rid of the smell once it dries. I wonder if it will make a stain on the mattress. UGH! Mattresses are expensive. I sure hope we don't have to buy a replacement. This is turning into quite an interesting day.

Here is my autism blogger of the day, Christa at Hyperlexicon has a son named Ben who has hyperlexia which is considered to be on the autism spectrum. She writes about Ben's struggles and triumps and her emotions that arise from helping her little guy be the best he can be.

Wednesday, April 15, 2009

First OT Session

Hannah finally had her long awaited first OT session and it was glorious. I am so excited and hopeful for what is to come. The OT introduced us to a technique that she felt would be beneficial to Hannah called The Wilbarger Brushing Protocol and joint compressions. When she first did it to Hannah she visibly relaxed and just seemed more comfortable than she had been all morning (it was another rough morning!). She kept requesting that we do it more and more and gladly sat while I did it to her before nap time. Once again she seemed much more calm after the brushing. The technique uses this funny looking plastic brush with flexible bristles. What I am supposed to do is firmly brush up and down her arms, hands, legs, and back with the brush every two hours and follow each brushing session with joint compressions to her wrists, elbows, shoulders, hips, knees, and ankles. I think Hannah likes the joint compressions the best. I am really hoping that this will help Hannah and that today wasn't just about the novelty of it for her. I'll keep you all posted on how she's doing. We are also going into the OT facility on Monday to try out several of their swings. Another possible thing we might try is something called therapeutic listening. I don't know much about it at this point, but the OT thinks it also might be helpful for Hannah. I'm game to try anything that might help. I'm going to do some research on the therapeutic listening though since I've never really heard anything about it.

Here's my autism blogger for the day Good Fountain. She writes about her daughters Charlotte (formerly known as Chee) and Sarah (formerly known as Ess). Charlotte is currently in the process of receiving an autism spectrum diagnosis. She brings up many wonderful thoughts and emotions related to dealing with parenting a child on the spectrum as well as one who is neurotypical. She always makes me smile. Go check her out.

Tuesday, April 14, 2009

Pneumonia AGAIN

Yes, Hannah has pneumonia AGAIN! The poor little thing seems to be a magnet for bacterial pneumonia. This is the 7th time she's had it in the past 2 years. Her most recent case was only 2 months ago right after her surgery. UGH! Besides the pneumonia, this time she also has a partially collapsed lung. That scares the begeezus out of me. The urgent care doctor says we don't really need to worry about it unless she gets worse, but I'm worrying anyway. Scarring also showed up on this most recent chest x-ray. The radiologist said it was from past cases of pneumonia. I worry that all these cases of pneumonia are going to permanently damage her lungs and I'm also concerned about WHY she gets this pneumonia all the time. What is causing her to be so susceptible? I know that Tiffany (Hannah's birthmother) has severe allergies and asthma and Chase (Hannah's brother) battles croup and ends up in the ER for breathing treatments from it frequently, but neither of them get pneumonia. Please pray for my little girl that she recovers quickly from this and that we can get hooked up with a pediatrician here quickly and get to the bottom of all of this. On a side note, I am also sick. Somehow I managed to get strep throat and pinkeye. Thankfully Hannah didn't get either of those from me and Kyle seems to have mostly escaped it too.

Lately Hannah's defiance and sassiness has gotten out of control. She is blatantly disobedient and speaks very disrespectfully to us. It's like she's 2 going on 16! We've tried several traditional systems of behavior management and discipline, but nothing really seems to work well with Hannah so we are going to go out on a limb and give one of the more unusual methods a try. It's called the Nurtured Heart Method and was pioneered by Howard Glasser. Kyra at This Mom first introduced me to this method. At first pass I thought it sounded fine, but that it was not my kind of thing. It was way too involved for my way of thinking. However, as things slowly spiraled down hill after our moved it became apparent that Hannah needed something more. It couldn't hurt to give Nurtured Heart a try. So I checked the book out of the library and set to work reading it straight through. We are all set to give it a try as soon as Hannah is feeling better. Wish us luck. If you want to know more about the specifics of Nurtured Heart, click on the link to Kyra above. She's done an excellent job through several posts of the basics of Nurtured Heart and how they've applied it at their house.

Here's my autism blogger of the day Full Soul Ahead written by Michelle. Michelle's oldest daughter has Asperger's Syndrome. She writes about daily life as well as some of Riley's challenges. They are currently in the process of getting an autism service dog for Riley and she has written several wonderful posts about how service dogs can help those with autism. Check her out. She's a great read.

Wednesday, April 08, 2009

Sweet Giggles

Yesterday Hannah and I went to the library for story hour. The story time starts out with several stations of toys and activities for the kids to do as they choose. Then after the activity time comes the actual reading of the stories. Yesterday there were 17 kids plus their accompanying parents at the story time! ACK! That was a lot of people and A LOT of noise. Hannah did ok though. She mostly stayed around the margins of the group and did her own thing. She played and did activities and was next to other kids, but didn't give them much interest. Still, she shared the space without seeming too anxious and didn't automatically vacate whatever area she was in when another kid showed up to share the activity. A few times she went off to play behind the bookshelves alone where it was quieter and less crowded. I think that was a good thing. Hopefully she was self-regulating. That's what it seemed like anyway. During the stories her eyes were glued to the librarian and she shouted out the answer to every question asked. All the other kids were fussing and fidgeting and talking, but not Hannah. She only had eyes for the story. After story time officially ended, the room cleared out, but 4 parents (and their kids) stayed behind to talk. I chatted with them since Hannah wasn't quite ready to go yet. Once the room quieted down Hannah became much more animated and lo and behold she started to actually play with one of the little girls! I was practically in tears watching them. This little girl was 4 and quite shy herself so she gave Hannah plenty of space. She was interested in letters and numbers and "intellectual things" in a preschool sort of way which is also the kind of stuff Hannah likes to do. The two of them stood shoulder to shoulder at an easel discussing how to spell their names and how old they were. Hannah taught Sophia how to write the letters in her name and the two of them just stood there and wrote and drew on that board for a half hour! I could hear them giggling and see them both smiling. It was AMAZING!!!!! Hannah looked so happy and comfortable in her own skin. That's a sight we rarely see around other kids. I was thrilled. I ended up getting the contact number of Sophia's mom so that hopefully we can set up some play dates for the girls. I want to capitalize on any interest Hannah shows for another kid and this little girl seems just perfect for Hannah, just the kind of friend she needs! :)

On Monday Hannah had a really rough day. REALLY ROUGH. Hour long meltdown. Lots of hitting and yelling. Defiance out the wahzoo. Still, somehow we made it to therapy to meet with the autism whisperer. While there Hannah played with the speech therapist while I was able to talk with the woman and get some really helpful ideas about how to deal with Hannah's meltdowns and how to age appropriately teach her the consequences of those meltdowns. She behaved beautifully during my session with the whisperer, but when it was time for us to leave and everyone was gone she had another huge meltdown. She took off like a rocket away from me and I had to sprint after her down a long hallway that lead to the elementary school housed in the building. I ran past parents in the lobby waiting for their kids to get out of therapy, the receptionist, and a whole lunchroom full of teachers, aides, and students eating lunch from the elementary school. The funny thing is that in any other place I would have been getting all manner of disapproving looks and possibly mean comments as I chased Hannah down and tried to wrestle her out of the elementary school and back to our coats, but here I got nothing but acceptance. I heard comments like, "She's just making sure you get your exercise for today." "She must really love it here since she doesn't want to leave." and even a "Been there. Last week I ran down that same hallway." That just goes to show you what a difference awareness makes. Not awareness that autism and other disabilities exist, but the awareness about what it's like to live with it and manage it. I might have been in tears and possibly mortified by this public meltdown if it had been any other place, but here I didn't feel the need to explain or apologize or make excuses. I just nodded and kept on at my job of corralling my daughter. No one thought I was being rude. They just accepted. It was wonderful.

Now for my autism blogger of the day The Incipient Turvy. M is an adult living with Asperger's. He was not diagnosed until adulthood and has been spending the last several years sorting things out. He's candid about his experiences and occasionally posts transcripts of therapy sessions he's had. It's a great read and I encourage you to check him out and tell him I sent you!

Sunday, April 05, 2009

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.

Thursday, April 02, 2009

Autism Awareness Month

Today is Global Autism Awareness Day and April is National Autism Awareness Month. Several of the blogs I read have already begun to post entries that highlight some of the most crucial points that the general public needs to learn in order to make life for those with autism better. As the month progresses I intend to link to several of my favorite autism blogs as well as highlight some of the things we have learned from our brief (officially) stay on the spectrum. The most important thing we have learned is that autism is a spectrum. No two individuals on the spectrum present the same way and range from mildly affected and high functioning (Asperger's Syndrome) to severely disabled and unable to perform basic self care or even communicate verbally (severe forms of classic autism). Autism is commonly referred to as ASD (autism spectrum disorder) in the medical community and is a pervasive developmental disorder. It is neurological and is not something that a person can grow out of or be cured of. With treatment, significant improvements can be made, but the individual will always struggle with the challenges of their disorder. That's all I'll say today on autism, but stay tuned for further facts and personal anecdotes from our experience living with Hannah's Asperger's. Here's my first blogger writing about autism. His name is Cale and he's a college student living with autism himself. His blog is awesome and has tons of great information about autism. So, without further ado, I present to you Spectrum Siblings.

The past several weeks have been really rough for Hannah in the sleep department. Instead of getting better the longer we stay in the apartment, Hannah is having more and more trouble getting to and staying asleep. For most of her life Hannah has disliked going to sleep and has always seemed to sleep much less than other kids her age. Starting at around 6 months of age her sleep issues started. She began resisting sleep more and more. Once she moved from her crib to a big girl bed things got even trickier. To her normal screaming and crying she added banging on her door with her hands and head. She has wonderful stamina when it comes to resisting sleep and could go on for hours (her record is 3 hours 15 minutes after which I put a end to the torture-both hers and mine!). Once arriving in the apartment Hannah added a new trick to her repertoire-deliberately wetting her pull up to get us to come in and get her a dry one and take her to the bathroom. You might say, "how can you know it's on purpose?" The reason I know is that every time she had been taken to the bathroom only minutes before, she has not had a waking accident in ages, and the accident always happened within two minutes of us walking out the door of her room without fail. It was most definitely deliberate. Once that trick ceased to get the desired response she upped the ante. Next came deliberately having a poop accident. She hasn't had a poop accident expect for diarrhea attacks due to antibiotics since she became potty trained nearly a year ago! This was most definitely deliberate as it happened right after us leaving the room as well. Finally, her most recent tactic is making herself throw up on the carpet right in front of her door! She's done this twice now. I'm pretty much at my wits end. Things absolutely cannot continue like this, but I don't know what else to try. Reasoning with her, cracking down hard, just ignoring her, we've tried them all over the past 4 weeks and none seem to help. I'm sure this is somehow rooted in the move, but I'm not sure what to do about it or what the real issue is. Has anyone had something similar to this happen after a big transition such as moving or a new sibling? I'd welcome any advice you could give me. Please, just no suggestions such as a consistent bedtime routine or soft music. We are sleep issue veterans and have tried just about everything over the past 2+ years and this is not your average sleep problem. This is new even for Hannah.

Since we've been in Rhode Island our entertainment has been a bit different than what we are used to and it's been limited to what I've managed to find in my limited exploration. We've spent the most time at the Children's Museum which Hannah calls the adventure museum. She LOVES her adventure museum and asks to go to it practically every day. We've already recovered our membership dues twice over and we've only been in the state for just under a month! Though she's being exposed to lots of kids there, I still haven't been able to persuade her to interact with any of them really. We'll keep working on it though since she really does have a ton of fun going there. Another thing we have been doing quite regularly is going swimming in the pool here at the apartment. Hannah loves watching Kyle do dives into and out of the water and really wanted to be able to do a "dolphin whale" AKA a dolphin dive herself. Since she has tubes in her ears she's not able to go under the water without ear plugs. I ordered her some plugs and a band to go over them to keep her from picking at them and we waited eagerly for them to arrive. Hannah desperately wanted to be able to go under so we checked at the front desk every single day until the coveted package arrived. Hannah was so excited to put her ear plugs in and go swimming that first day. We took her down and she immediately wanted to go under. Once she did she was not keen on doing it again. Though we prepped her extensively about not breathing in while under water and taught her how to take a deep breath before going under, she came up sputtering and flailing from her brief under and up dunk. I figured it would not be a happy experience given how upset she gets when water gets into her eyes in the bath, but we gave it a try because she REALLY wanted to be like daddy. Another fun activity that Hannah has been enjoying is helping us prepare meals. She loves it so much that losing the privilege of helping, even if it's just pressing the buttons on the microwave to heat up leftovers, is the ultimate punishment. Unfortunately it's not enough to create a positive change in behavior, but it certainly makes her fighting mad!

Hannah is anxiously awaiting the arrival of the Easter Bunny. She's sent a constant barrage of questions towards me about the particulars of what the Easter Bunny does and how he does it. Since the bunny visited her last year and hid eggs around the house (and yes she does remember hunting for them even though she was only 18 months old!) she is convinced that the Easter Bunny lives in Indiana and will have to fly on a airplane to get to Rhode Island to hide her eggs this year! It made me laugh the first time she told me that, but my laughter has not deterred her from her insistence that the Easter Bunny will be arriving on an airplane. She's also informed me that the Easter Bunny is like Santa since he comes in secret at night. Since he is like Santa we will have to leave him carrots to eat like we left cookies and milk for Santa and carrots for Santa's reindeer. That little girl never ceases to amaze me.