Chairs and Swings

We had a lovely visit with our RDI consultant Christine yesterday. We love it when we get to meet in person as it always gives us new motivation and energy to keep running our marathon. We have days with our RDI program that we just "don't feel like it" and those days are the ones where we need to remember that it is a long process, but if we are diligent we (and Morgan) will succeed.

Yesterday we had a great lesson in limit-setting. It was something that Christine was going to bring up that session, but just was we were getting started a perfect opportunity presented itself to us. As we were sitting down, I decided to give Morgan and Piper some cookies and milk before their "quiet time." As I placed the cookies on their small play table they both went for the same chair. Piper got there first, but Morgan tried to sit on it too and grabbed at Piper's cookies. Chaos ensued and somehow I was able to extract Morgan from the seat and give Piper her cookies back. Thus the major meltdown began. Morgan refused to sit on the other chair. I sat there and held her a bit and tried to get her to settle down, but she'd already passed the point of no return.

Christine jumped in and gave us some advice. She reminded us that Morgan was mad, but she was OK. She also told me not to coddle her as she needed to learn to "self-regulate" on her own. Children with autism do not do this easily. So, then I slowly backed off and let Morgan sit by herself on the floor. Meanwhile Piper finished her snack and David took her upstairs to her room. As happens when Morgan is upset, she also went upstairs to her room on her own. This is a kind of coping mechanism she uses. We had originally planned on keeping Morgan with us during the session, so once Piper was in bed, David coaxed Morgan back downstairs. Christine had started to review some material with us and I had placed myself in the chair that Piper had been sitting in. Morgan's snack was still there, so at that point she could choose to sit and eat...but she didn't. She saw me sitting there and got very upset again. She had not really calmed down upstairs, so it didn't take much to set her off. She went back and forth between trying to push me off the chair and just lying on the floor crying. Christine told us to leave her be. We could remind her at times that her snack was there, but she needed to try to calm down by herself.

Christine told us this was not about Piper, the cookies, or even the chair specifically... it was about control. I then realized that most times I give them cookies for snack Morgan does sit in that particular chair. Why? I don't know. It just is. There are plenty of times she sits on the other chair, but somehow she has it in her head that for eating cookies she must sit in that chair, on that particular side of the table. She was being unreasonably rigid about this. This is something kids with autism do. Certain things must be done certain ways...and if we let them, the rigidity will continue or possibly get worse. The fact that we held our ground with this threw her into a tailspin of uncertainty and anxiety. It was the unknown and it made her very upset. Now, most people can rationalize that it's just a chair and if you sit somewhere else, the world will not end...but Morgan cannot yet do this. Her brain short-circuits somehow and tells her that something is not right. Then she goes into fight or flight mode. Another important point is that at no point did we take away her cookies and milk. They were there for her if she chose to eat them, but she could not sit in the chair she wanted. After a period of time, and it was quite a while, as we continued to work with Christine on some other items and viewed some videos, Morgan eventually calmed down, sat in the (previously rejected) chair and ate her snack. Success!

This is something that we need to tackle now. Setting limits in these situations will help Morgan to slowly learn that doing things differently is OK. This is more of that "dynamic" intelligence we are working on. Morgan cannot live in her "static" world, she needs to become more flexible in her actions and her thinking to allow her to grow emotionally and socially. Christine shared an example of a thirteen year old boy she worked with who at that age was still very rigid in his thinking. There were circumstances at school where this very thing happened. He wanted a particular chair, and he physically pushed another child off it. At that point, being bigger and stronger, this is viewed as extremely aggressive and is not only unacceptable, it's stigmatizing for the child. Now is the time to work on this and help Morgan not only be less rigid, but when she gets into a meltdown mode, to help her to quickly "regulate" her thoughts and feelings so she doesn't react in a negative way.

We had another great example of this today at church. While playing on the playground after the service Morgan wanted me to push her on the swing. I did this for quite a long time, then switched with David when I had to use the restroom. When I came back Piper was taking a turn on a different swing (Morgan was still on hers) and she wanted me to push her. When I started to push Piper, Morgan got very upset and refused to let David push her. We told her that she could stay on the swing, but Mama was pushing Piper this time. Again, for whatever reason, she was trying to control the situation and we had to set the limit to not allow her to be so rigid. She sure stuck to her guns though and eventually David had to pick her up off the swing and carry her to the car to go home. She cried the whole time and even once we were heading home she kept asking to go back to the playground. She did calm down on the ride once she realized we were not giving in.

It is so easy to accommodate in many ways to keep everyone "happy", but we now realize for Morgan this is detrimental to her development. I know there are many times in the day that I ask Piper to do things that are really unfair to her to make Morgan happy. And sometimes I do the same thing for Piper. We will be working on better recognizing these opportunities for Morgan to learn to increase her flexibility. I think it's a benefit for Piper as well as she cannot get away with some of her two, almost three-year old behaviors just because we want to keep the peace. Christine said to expect it to get worse before it gets better, but if we are diligent we should see things get better after several weeks.

Please pray for us! :-)

It's all fun and games...

...until you run into your little sister with your new bike!

Piper's fine...just a few small scratches. Oops. But things we a little more successful later...

If you notice some odd behaviors or language in these videos, we are trying to help Morgan to learn to ride her bike using some RDI (Relationship Development Intervention) language. We're not great at it yet, but we are try to use much less "command" type language and a lot more non-verbal communication. This was our first try at this with the bike, so we found it was difficult to stay consistent when Morgan veered off course, or wouldn't stop...but we'll get there.

In the last video Morgan was upset because our neighbors just left to go out of town for a few days. She really wanted to play with her friend Mya. Our goal of this riding session was to get her to ride her bike from the sidewalk all the way across the street. This task was interrupted by her friend leaving. We wanted her to push through this upset state and complete the task (without sending her into a meltdown). One of the many goals of RDI is to help Morgan become more flexible and be able to regulate her emotions better. Also, note that she gets a little help along the way from Piper!

We thought it would be fun to show some progress of Morgan on her bike. We'll keep posting more as she gains confidence.

RDI and Star Box

Last week we took a, somewhat impromptu, trip to the Tri-Cities to see our RDI Consultant, Christine. We had been on a bit of a "break" from our program when Christine had unexpected surgery. We kept our activities status quo for a bit and then got back in contact as she was feeling better.

Christine had planned on making a visit to our neck of the woods this time, but with some scheduling conflicts we decided a few days ahead of time to head down her way. Both Morgan and Piper LOVE visiting "the hotel" and sleeping in their peapods (mini tents). They were so excited to make the trip!

We have been in a phase of our program where Morgan, David and I were all assessed on our skills and current status of many things such as, our mental health, obstacles that may be in the way of making progress, as well as Morgan's areas of "deficit". I know that terms sounds odd, but this is something you hear a lot when kids with autism are evaluated. Common areas of deficit are social skills (can be a wide range), referencing, joint attention, etc. It is different for every kid. A bit of great news is that Christine didn't see any "outside" areas that needed to be addressed with additional therapies. Some kids need help from an Occupational Therapist or Speech Therapist for specific issues that can be obstacles to progress in RDI. Sometimes these things can show up along the way, but for new we are grateful to not have to consider this.

I also fully appreciate how this program really takes into consideration of the whole family, not just the child with autism. Since it is to be parent led, we need to be in a place where we are able to guide Morgan in the optimum way to help her make progress.

When we met with Christine she gave us a report that included her assessments in all these areas. We reviewed videos that had been previously recorded and discussed the positives and negatives. In the end we received our first three goals. We scheduled meetings through the end of July and are taking new steps forward. David and I have quite a bit of homework to do on our own in addition to working with Morgan. It's going to be busy summer in so many ways!

The picture above is on our scheduled stop at Starbucks on the way home from the Tri-Cities. Morgan refers to this lovely place as "Star Box." Usually the girls get a treat of pink donuts...but that day they didn't have them, so they chose to share a chocolate chunk cookie (see Piper's right hand). Happy girls, make happy car trips!

Plateaus and Connections

Sometimes I think there is a bit of a pattern to Morgan's development. It is possible that most kids develop this way, but I'm not sure. Piper may more of a sure and steady girl, taking a gradual approach, but Morgan is a bit more complicated. But, how can we expect anything different from her?

Currently, I think Morgan is in a "plateau" stage at the moment. In this stage, in the past, she sort of levels off for a while before she makes a big jump forward. Preceding the jump is usually what I call a "crisis of frustration" phase where we seem to struggle more with communication and see more outbursts and tantrums. I know we are not there right now, though she has her moments, so now is the plateau.

During last summer she had a huge jump forward in her expressive language and once she started school in the fall, she took another leap. She has much more spontaneous language, less scripted, though some is still there. I find she makes these leaps as schedules/routines change, as this is where she is challenged the most. She likes her routine and fights to stay in it...but that is not life and she is forced to make changes, thus she takes jumps forward, whether she is willing to or not. Thank goodness!

Now we are back in the school year as our winter break is done. Maybe we'll see another jump forward soon? Dare we say there is a "pattern"? Once we think we figure something out, it changes again.

We are taking steps forward in our RDI program as well. In just the last week I have worked very hard with Morgan to incorporate techniques and "activities" into our routine. Though it is hard work to keep her engaged, when we do it there are great rewards. I must admit, that at times I have a hard time "connecting" with my girl. She is high-functioning enough that she never completely retreats into her own world, but she is satisfied with more playing on her own and loves to watch her favorite TV shows (again and again). Since I have been working with her more consistently I have felt more "connection" with her. When we are in the midst of what we call our "projects" she often will stop to give me a hug or kiss. I'm sure she feels much more connection with me as well. Some of this is due to the one-on-one attention she gets and I am down on her level...but some of it is due to the strategies of helping her to become more dynamic in her communication.

With RDI we try our best to use more "dynamic" communication with her. We avoid questions and commands. These things require rote answers, not forcing her to think and make more dynamic pathways in her brain. We use "experience-sharing" language, talking in detail about what we are doing and seeing, whether we are sorting laundry or putting away the dishes. We also work side-by-side in a way that we are dependent on each other, no one working completely independently. It is truly what the name is "relationship development." We are still at the beginning of this journey, but I am thrilled with the progress so far.

I'm off to work with Morgan some more and hopefully lots more hugs and kisses along the way!

Lots of Language

Both Morgan and Piper are making nice progress with their language lately. This is encouraging for us in so many ways.

Piper, at 23 months is consistently using combinations of words. The other day I swear she said to me "I want eat a hot dog." Really. Oh, and "hot dog" is what she says when she means any kind of food. She also has finally decided to call Morgan "Boo Boo." I think she attempted "Morgan" for a long time and it finally dawned on her that "Boo Boo" was way easier to say. Last night she made her way around the dinner table pointing at each one of us saying "Mama eat," "Dada eat," "Boo Boo eat." Very cute. Even when she wakes up in the morning she'll call out "Boo Boo, Boo Boo!" until Morgan comes in her room to see her. It's nice to see Piper hitting her milestones with language. Obviously we did not see this with Morgan. It still amazes me that this happens naturally with "typical" kids. We've had to work so hard with Morgan to help her language along. It's nice to see Piper might just do it on her own.

Morgan has been using a lot more spontaneous, descriptive language lately. She is talking a lot about what she sees and even a little about what she feels. Last week I was playing a game of catch with her. I wanted her to come closer to me, since we were not doing well with her standing so far away. She refused and I "pouted" for a bit. She then said "Mama want to be happy!" This meant she wanted me to smile, I think. She's said this more often to all of us and is very satisfied if we give her a big smile. I'm not sure if she's really understanding the emotion or just wanting the smile instead of a frown. Doesn't matter, it's nice that she is recognizing the expression. She still is using a lot of repetitive and "scripted" language, but that is OK as long as new language is happening too.

Morgan is also talking more directly to Piper. She tells Piper that she is doing a good job and encourages her when she does new things. She is recognizing the words Piper is saying and often I hear, "That's right Piper, that is a ...." Too cute! If she doesn't want Piper to play with her she says "Piper, you go play with the...." She actually looks at Piper when she says these things, instead of looking at me to do something, or help the situation. This makes sense, since kids with autism tend to have a slower processing speed with language. She is able to keep up with an almost 2 year old and interact. Hopefully as we continue our RDI program (still in the parent education stage) this will improve and she will be able to interact with older and older kids. I'm feeling better, as we get closer to the school year starting, that we're making some progress this summer.

Update on RDI

So...we made our first trip to the "Tri-Cities" (Pasco, Kennewick and Richland, WA) last week and it went well! The drive was two hours, so not bad. We (meaning me and both girls) made a stop halfway on the way down for Morgan to go potty. As we left the Starbucks restroom I told Morgan we were getting back in the car. She said "No, I want lunch!" Apparently she thought we were stopping for food too. She had already had her lunch at home and we were purposely making the trip during "nap" time so Piper could sleep. I managed to get both of them back in the car and Morgan seemed satisfied with a special scone I got her.

When we got into town we met up with David (who had made the trip early that morning and had some sales calls), had some dinner and went to meet with our consultant, Christine. She runs the Responding to Autism Center in Kennewick and it was an impressive facility. In addition to RDI, they do all sorts of autism assessments and therapies as well as running social skills groups.

That evening we went over the basics of the program and got to know each other a bit. Morgan and Piper played nicely with some toys and who can resist a long hallway to run up and down?! The next morning we did our first RDA, a baseline assessment of where Morgan is at as well as how both David and I interact with her. Christine had us do some specific activities with her and videotaped the sessions. This will be used for comparison when we do future assessments to evaluate how our interactions improve.

David and I have started our first homework assignments. Since RDI is a parent-led program, the first few months are all about educating the families about the program and preparing us to work with Morgan using what they call "Guided Participation." It was wonderful to hear that this program will really be working to change how we interact with Morgan on a day-to-day basis, not any specific time that needs to be set aside for "therapy." We can use the taught techniques any time of the day, eating, playing, any activities outside of the house, etc. We will be helping her to learn the basic communication and social skills she didn't naturally learn. As we have not yet learned the techniques to do this, I don't have examples, but I will share bits and pieces as we go along.

All in all the driving, overnight stay and sessions worked out well. Our next session will be via Skype, so it looks like we will need to make the trip about once a month, which is totally do-able for us. We are also fortunate that Christine has family in the Spokane area too, so she will be able to make some trips our way as well.

Game On

We've finally got dates set to start the RDI (Relationship Development Intervention) program. We will be traveling to the Tri-Cities (Pasco, Kennewick and Richland, WA) on Thursday, June 30. We will combine this with a work trip for David and stay overnight. Thursday evening we will have our first session with our consultant and continue with another session on Friday morning that will include a base assessment of where Morgan is at. This will give the consultant the tools she needs to determine where we need to start.

It should be pretty intense. We need to meet with the consultant every two weeks. Hopefully she will be able to come to us once in a while so we don't have to make the drive every time. I think as we get further along in the program we'll be able to do some sessions via skype, so there will be less travel involved. Traveling that often may be difficult with school in the fall, but we'll take it as it comes. Sometimes I get a little annoyed that we don't have a consultant here, but I tell myself not to dwell on it and we're grateful that she's as close as she is.

So far, we're getting into a summer routine. I've been getting myself back to the gym and the girls have been adjusting to going to the gym child care. There are a lot of activities and toys we don't have, so it's fun for them. Piper is still having a little trouble when I drop them off, but today she was fine when I made the pick up. I heard some crying as I approached, but was glad when I realized it was not Piper. Overall it's a good social atmosphere for the girls and really good for my attitude as I know I'm working to get myself healthier and more fit. The endorphins sure help a lot too!

Other days we go on errands in the morning and we're hoping to plan some play-dates. Swim lessons start this Saturday and I'm researching some ballet classes for Morgan, either through the Y or elsewhere.

I think this summer is going to fly by, and that sounds really good.

The Isaac Foundation

We just learned that we have received a grant from a local organization called The Isaac Foundation. Yahoo! It is for a specific type of therapy called Relationship Development Intervention. I've mentioned this before as it was one of the recommendations from our child psychologist when we received Morgan's diagnosis.

The Isaac Foundation is a local organization who provides grants to families with children with autism in five surrounding counties. The couple who founded it had a child with a diagnosis similar to Morgan's and they understand the financial strain on parents as insurance does not cover many autism services and therapies. Please read their story in the link provided.

I attended an orientation last night and had the privilege of meeting Holly and Reed, who founded this organization. They touched my heart as they explained that this is their passion. Though they lost their son (due to an undetected heart defect unrelated to autism), this is their way of keeping his memory alive. Isn't that amazing?

I spoke with the RDI consultant, Christine, today and we are getting started with some basic information and "get to know the family" type paperwork. Christine lives in central Washington, about two hours from us, but she is working with The Isaac Foundation to work out a plan to come to Spokane once a month to meet with families. We will also be able to consult via Skype as well. This therapy is wonderful in that it is primarily parent-led, so we do not have to take Morgan to therapy "sessions." Our sessions will be conducted at home at specific times and throughout our daily routine while checking in with our consultant a few times a month. There are some initial assessments and parent classes that we will also begin soon, and she is hoping to be able to conduct these in Spokane with a few other families in early summer.

We are SO excited about this opportunity and can't wait to get started! So you know, the grant does not cover the therapy in it's entirely, but will help us get the ball rolling and make it more do-able for us. The program itself on average takes about two years, so we will have another opportunity to apply for an additional grant along the way (they are only awarded once every twelve months).

Newly Diagnosed and Mommy Guilt

Since Morgan's "official" diagnosis I have spent, what feels like, every waking hour researching websites on autism, blogs and therapies. There is so much to learn and I want to learn it all as fast as possible so we can help our Morgan girl learn. She is at such a crucial age now so I want to take advantage of it while I can.

In my research, I find the blogs of so-called "Autism Moms" the most compelling. It's nice to read the stories of others out there like us. Moms who have dealt with the questions, the diagnosis, diets, therapies...to really find what works best for their child(ren) and their families. There are many opinions out there on what works and what doesn't (more on that in later posts), but mostly I like reading about these women for inspiration and their kindred-spirits. As we have yet to dive into the autism community in our area, these blogs are my connection to families like mine and kids who "look" like my girls. They are surviving and many are thriving. It's about holding on to hope for a good future for my little girl.

As I slog through all the information out there, there is some Mommy guilt too. I was reading through some milestones for Piper for her age and came upon the statement "can name one body part." I thought, oh, we've got that covered. I put Piper on my lap and said, Piper, show me your nose! To my surprise she totally ignored me, busy looking at the book she had in her hand. I quietly freaked out a little. A few months ago she had this down, ears and eyes too! Did she forget? Possibly. Oh, no, more freaking out. Since then I've gotten her to show me her nose once and she says very sweetly, "no-, no-". OK, so she can say it, that's good. We're not out of the woods with her yet on the neuro-typical (NT) front so that fear is still there.

I'm also feeling guilty for not moving forward more quickly with the RDI therapy for Morgan. Per the book we have, we're working in the first few activities into our overall communication, but looking ahead I'm a little intimidated by the lessons and whether I'll be able to execute them well enough for her to learn. We've been given a contact in the area who consults on this therapy...though it may cost us some money, we may give it a try to use the consultant. It's not as costly as some therapies who require many hours of one-on-one time, but at least this consultant can make sure we're on track and Morgan is making progress. More research on that to do...

This is what is keeping me busy lately. Very busy.