A New Year, A New Reality

Pervasive Developmental Disorder - Not Otherwise Specified (PDD-NOS). This is the overall diagnosis we received for Morgan on Wednesday. Huh? What is this? Why does autism have to be so complicated? I'll see if I can explain how they came to this conclusion.

Morgan was evaluated using the Autism Diagnostic Observation Schedule (ADOS), Module 1. I quote, "It is a standardized observation instrument used to assess social and communicative behaviors in children with autism. The ADOS, Module 1 includes activities such as free play with toys, response to name, response to joint attention, bubble play, anticipation of a routine with objects, responsiveness to a social smile, anticipation of a social routine, functional and symbolic imitation, participation in a birthday party and snack time."

The ADOS is scored in two sections, Communication and Reciprocal and Social Interaction. In the Communication section Morgan scored a 4... which put her in the "Autism range of 4-10" (the Autism Spectrum range was 2-3). In the Social Interaction section she scored a 4 as well... which put her in the Autism Spectrum range of 4-6 (Autism range was 7-14). So, overall the final score was an 8 which put her in the overall Autism Spectrum range of 7-11 (Autism range was 12-24). A "typical" child would score anywhere from 0-6.

So, if that made sense, Morgan is on the higher functioning end of the spectrum, which we feel very fortunate about. They said if she was older she would be diagnosed with Asperger's Syndrome, but not knowing where she will end up in her language development, for now it is PDD-NOS. Basically this means she does not have all the traits required to make her "classically" autistic, but she has enough of them to put her "on the spectrum."

Overall, if we have to have a child on the spectrum, we are grateful that she is where she is. The recommendations we have to move forward include the combination of "typical" and "developmental" preschool that we already have in place (Yay!). There is also a possibility of a special program through Eastern Washington University for the next school year. They did not recommend additional speech and language therapy, but we will revisit this if needed in six months. They also recommended what is called Relationship Development Instruction (RDI) therapy at home. They gave me a book to review that gives instructions on how to work one-on-one with your child to teach them basic body language and other non-verbal communication.

Finally they gave us a great list of contact information for local resources and support groups, such as the Inland NW Autism Center and the Spokane Chapter of the Autism Society of Washington. There are lots of learning opportunities for us through both of these groups.

Aside from the test scores they did tell us that we have some other things going for us as Morgan is both smart and strong-willed. Other autistic children can be more passive making motivation difficult. As much as her being strong-willed is challenging to us i.e. stubborness and tantrums, it can only work in our favor in the future.

So, this is our new reality with our Morgan. I think we feel as good as possible about knowing what we are dealing with now and look forward to learning better ways to communicate with our daughter and help her reach her full potential. Also, during our meeting with the psychologist and SLP (speech therapist), they were able to observe Piper and noted that she had good communication and social skills for her age. They did say the key time frame for some kids with the onset of autism is 18-22 months (though I think Morgan showed signs all along). I think we'll breathe easier in Piper's case once she reaches her developmental milestones at age two.

Have you hung in there? We are off to a NYE party with friends tonight. Looking forward to ringing in a whole new chapter in our lives!

Santa Claus Came to Town

Santa Claus is Coming to Town was one of Morgan's favorite songs this Christmas season. She would always request "sing Santa Claus!" And by Christmas she was singing it all by herself. Those people we skyped with on Christmas day can attest to this.

As soon as the girls came down the stairs in the morning they headed right to this new little car. Piper opened the door and hopped right in. This is later in the day when Morgan decided it was her turn and Piper didn't want to be left out.

I think Morgan had enough of Piper sitting on her and she quickly exited the car. Now Morgan likes Piper to push her around the kitchen in it.

Both girls got lots of new toys to play with. I think they were both a little overwhelmed. Even after a few days they go from one new toy to another, not quite deciding what they want to play with the most. We certainly have a challenge ahead of us regarding storage. Some toys are going to have to be "cycled out" somehow. There is just too much that they don't play with anymore.

Check out this sweet fairy princess. Several times a day Morgan wants help to put on this beautiful costume her Aunt Cristen bought for her. She loves the crown the best which sometimes is left on long after the rest of the costume has been removed.

A little blown out, but I love the expression on Piper's face. She is giving us all sorts of funny and expressive looks lately. She also tilts her head to the side in a silly/coy kind of way that makes us laugh every time. She also has been giving us the BEST hugs! She'll walk up to you with her arms up. Once you pick her up she leans in, puts her head on your shoulder, wraps her arms around and actually "hugs" you. Sometimes she throws in a few pats on your back too. Grampa is totally smitten!

Our sweet girls. Notice the bow on Morgan's head. She had many colors of bows on her head throughout the day. Cracked me up.

We had a wonderful day of enjoying Gramma's wonderful cooking. Sausage/egg casserole and coffee cake for breakfast...yum! Then Aunt Trudy and Uncle Dan came over for an amazing dinner that night. We had a lovely fillet roast with broiled tomatoes and orzo pasta, topped of by creme brulee for dessert. It was divine!

So, considering our news earlier in the week we managed to have a wonderful Christmas. Diagnosis or no diagnosis, Morgan is our sweet girl and we will love her to no end no matter what. This marks a "new reality" for us, a challenging journey ahead, life with an autistic child. We will take it day by day and do our very best for our girl.

Also, Gramma and Grampa A had to leave to head home this morning. So sad. We had a wonderful three weeks with them. We were so spoiled by Gramma's cooking and their generous babysitting services. We were able to enjoy several holiday get-togethers sans kiddos. They just really wanted to spend time with the girls anyway.

It was also invaluable to have them here while we had Morgan's testing and initial results. Having that emotional support was amazing. There are so many decisions to be made in these situations and having confirmation that we were doing the best we could really helped.

David is "off" work this week so we are planning lots of good outings and family time (he is taking calls, just not traveling or visiting clients). I am also thinking this blog needs a design overhaul...not sure when that will happen, but a "new reality" needs other changes as well. So much to talk about...so little time...

The Email

From an email sent from the child psychiatrist:

"...we are seeing her on the autism spectrum..."

And after a few more short emails back and forth to schedule a meeting to discuss...

"Have a nice Christmas."

Sure.

Hyperlexia

This is a new word in our family vocabulary. Morgan had her long-awaited evaluation with the child psychologist last week. The evaluation is still in progress, but in the interim we were introduced to this new concept. Hyperlexia is simply defined as a "precocious reading ability in very young children." We've been fascinated with Morgan's early abilities to recognize and name numbers, letters, shapes and colors. In the information on Hyperlexia I've read so far I've seen the term, "an intense fascination with letters and numbers" several times. This is definitely the case with Morgan, who will announce any letters and numbers she sees...anywhere, the sign on a store, a highway speed limit sign and even the page numbers in a book. She's lately taken to spelling out a word on a page and then asking us "what's that spell?" I couldn't say she's actually reading yet, but I could see it happening anytime.

In some kids Hyperlexia is just a higher level skill and they go on to develop "normally" ("neuro-typical" or NT is what I see a lot lately). However, in many children Hyperlexia is often seen as a "splinter skill" that is associated with autism. Some other professionals think that Hyperlexia in some children causes "autistic-like" behaviors, but the child may lose some of those behaviors as their communication skills improve.

With Hyperlexia many children can read, but unfortunately there is a lower comprehension of what they are actually reading. There can also be significant problems in understanding language. This makes sense to me as many times I've tried to explain something to Morgan or ask a question and I just get nothing back. Many times I've said to David that I just don't think she understands what I'm saying to her. Expressive language is delayed and with early speech, what they do say is often "echolalic," repeated words and phrases. There is little spontaneous language.

The psychologist did say that she saw red flags for autism during her evaluation, but she felt she needed more information. We now have her scheduled to observe Morgan's preschool class in early January. She wants to observe how Morgan behaves in a class of NT children. I'm encouraged that she wants to do this. Though we still may come out with an autism diagnosis, I feel like the evaluation will be thorough and we will have something concrete to work with.

There is much more to it...I could write forever. If you are interested, here are a few links to articles on Hyperlexia that have been helpful for us. Much of it surprised us that the more we read the more "it sounds like Morgan.":

http://www.brighttots.com/Hyperlexia

http://wisconsinmedicalsociety.org/savant_syndrome/savant_articles/hyperlexia

http://www.k12academics.com/disorders-disabilities/hyperlexia

No matter the outcome, we know we have a lot of therapy and special education ahead of us. She is in a good place with both of her current schools and therapy schedule. It may not change much even with an official diagnosis, but it will give us more detailed information to use so we can help her maximize her potential.

School Girl

Morgan started her new (and second) preschool on Tuesday. I just looked back in my posts and realized I haven't talked much about Morgan's developmental issues much lately. On her birthday she aged out of the Early Intervention program (EI). Back in September we had a "transition" meeting with the psychologist from the school district as well as a representative from EI. They told us what the options might be for continued therapy as well as a possible preschool program. We then scheduled her evaluation for mid-November, so she would be able to start as soon as she turned three.

The evaluation was pretty intense. There was a speech therapist, occupational therapist (fine motor) and the psychologist all taking turns asking her questions and asking her to perform tasks. There was woman who also tried to test her hearing and vision. Morgan did not cooperate well with this (tell me what almost three year old would want to put earphones on their head?!), but it was determined that her hearing and vision are fine. Finally she met with the physical therapist who put her through her paces... and let her jump on a trampoline a lot, which she loved!

A week later the psychologist called to discuss the results. She said Morgan had been "keeping her up at night" because she wanted to figure out what was best for her. Morgan (at that point) didn't have any qualifying scores. We were afraid of that. She is behind in all areas, but not enough to qualify for services at this time. The psychologist had one more score to collect and she called me back the next day. That day we learned that she had just qualified in the area of occupational therapy (OT - fine motor skills). I wasn't surprised. This is one area she had not been fully evaluated on with EI and I always have trouble keeping her interested in things like coloring. With the score she received she also needed to qualify in another area to attend the preschool. The psychologist made a "professional judgement" to allow her to attend based on the area of social skills, since Morgan did seem to be challenged in this area. She said that she does this only once or twice a year with a child that doesn't have all the qualifying scores, yet somehow seems like they would benefit from the preschool. This is what they call a "developmental preschool." There are kids there with various developmental issues that need early assistance and therapy so they are ready for Kindergarten when they are older.

I was very grateful that they were able to make an exception for Morgan. It is easy for kids like Morgan to fall through the cracks in the system. I think the developmental preschool will especially help her in the social area. She will still attend her "regular" preschool on Mondays, but will attend the developmental one Tuesday, Wednesday and Thursday. It is a lot of school, but I think having the teachers and therapists there will help make sure she is getting the extra assistance she needs.

There may also be an option of her attending a program called AIM early next year. It is the Alternative Instruction Model. It is a program for autistic kids. Currently they have lower-functioning students in there now, but there may be kids more at Morgan's level starting early next year. We still do not have an official diagnosis of autism for Morgan, but the school psychologist confirmed that she thought this was a strong possibility. We are scheduled for the official evaluation with the other child psychologist next week. I'm nervous about it, but ready to know what we are really dealing with so we can tackle it head-on.

So, for the report on school this week, Morgan is doing well. It was a long week and two of the four mornings I had to wake her up she said "no school!" Once she was there she did great through. They did say she seemed kind of out of it today, but she really was pretty tired after such a busy week. She'll adjust to the schedule. Since they go by the school schedule we have one more week until Christmas break, then she'll be back in school the week of January 3rd. I spoke with the OT about her first session today and she said she did great! They think she's really going to "take off" with it. I was really excited to hear this. I also got some tips on things we can work with her at home.

Since Morgan did not qualify for speech therapy with the disctrict I'm thinking of continuing with some private therapy after the holidays are over. Her teacher is really impressed with her language skills, but I think it is compared to the other kids in her class. She is still quite behind typically developing kids.

Thanks for sticking with my long post, but this should catch you all up on Morgan's progress. Overall we are so proud of her for the progress she's made. Despite her struggles, she is such an awesome little personality. We just want the best for her.

Morgan is THREE!

Morgan turned THREE on Sunday! She woke up to see streamers and balloons. We told her it was her birthday and she said "Birthday time for Morgan!" She always gets a huge smile on her face when we sing happy birthday to her. She started opening a few presents in the morning. She really like to play with each gift after opening it, so the presents lasted her most of the day.

We had a nice, casual gathering of friends and neighbors in the afternoon. It was the perfect size for Morgan to handle, a few kids she knows as well as Gramma and Grampa A who arrived on Saturday. We had such a good time! Here are a few pictures of the kids at cake time.

Such a pretty Birthday Girl

Blowing out the candles (with a little help from Mama)

Mmmm, the frosting on this candle tastes good, but where's the cake?

Believe me, she enjoyed it. She savored it so much she was the last kid at the table and she devoured every bit of it and the ice cream. Her friend Taylor (and her Mom and Dad Trevor and Amy) stayed for dinner. As usual, Taylor didn't want to leave that night and Morgan didn't want her to leave either. All in all she had a great birthday! We can't believe she's three. We are blessed that we have such a wonderful little girl!

Piper's 15 Month Well Baby Appointment

Monday Piper had her 15 month appointment with the pediatrician. It was quite a challenge as David had work obligations so I had to take Morgan and Piper with me to the doctor's office on my own. Morgan ended up behaving very nicely. My biggest challenge was that Piper is still in her "mommy only" phase and did not care for anyone else touching her. Poor thing was exhausted by the time it was over. Here are her latest stats:

Height: 31 inches (68%)
Weight: 23 lbs 4 oz (57-58%)
Head Circ: 18.3 inches (64%)

So, she's evening out a little since her 12 month appt. She's in a higher percentile for height and a lower percentile for her weight. Still smaller than Morgan, but her body type seems completely different so far. Even though she's not in a high percentile for her weight, this girl has got some thighs! But, what's cuter than a chubby baby?!

Developmentally she's doing well. The only thing we are getting a little impatient on is that she's still not walking!! She will walk anywhere from 6-10 steps between us when David and I sit on the floor with her, but she won't yet commit to full time walking. The Dr. and Morgan's physical therapists say she's got all the skills to do it, she just needs the confidence. That's why David and I are doing "walking practice" with her whenever we can. Morgan LOVES watching Piper and cheering her on, it's so cute! We think it could happen any day. She is showing improvement every time we work with her, so it's really only a matter of time.

Piper was due for more immunizations, so we had that trauma to deal with. Poor baby was screaming even before the nurse touched her. I know they are necessary, but it's sure hard to watch.

We went right from the appointment to Morgan's preschool. One positive from the appointment is that Piper was much more mellow and I didn't have to chase after her as much. It was nice to be able to participate in the parent's discussion this time.