Monday, March 25, 2013

Weekend Getaway to Rochester


Some pictures from a recent trip to the Children's Museum in Rochester, New York. The kids had a great time and Lauren surprised us all by exploring a lot of areas on her own and trying new activities as well. Kayla's favourite part was the grocery shopping at the mini Wegman's grocery store and Lauren enjoyed Sesame Street.









No ASD

I had brought up the question of whether Lauren might be autistic at her developmental assessment last year because she seemed to be exhibiting some autism red-flags like no expressive speech, no social interaction, poor communication, seems to be in her "own world" at times, etc. At the time, the developmental pediatrician did a developmental assessment and a partial ADOS (Autism Diagnostic Observation Schedule) and concluded Lauren would not receive a diagnosis of autism based on the fact that she did not exhibit any behavioural traits like walking on tip toes, lining up cars, flapping, etc. The developmental ped did agree that Lauren had a lot of the speech and communication disabilities that were similar with kids that had autism, but this alone was not enough for an autism diagnosis.

As a follow-up Lauren went for a full ADOS (Autism Diagnostic Observation Schedule) exam 2 weeks ago. Some of the testing elements I remember from a year ago. I remembered when she was 2, the report remarked that Lauren did not show any joint attention with parents. There was a table full of toys in the room, and during the assessment Lauren walked straight to the table and proceeded to play for 20 minutes or so, without once "checking in" with us (i.e. looking at us, bringing a toy to show us or coming over to us and taking us to the table). This time, a year later, same table with the same toys, she walks right up to the table, takes a toy and immediately brings it over to us to show us! She then went back to the table, played a bit and came back to us to "check-in". Long story short, her communication skills have improved since last year. She is pointing alot more, showing us things and using her eyes alot better to get our attention and to communicate. The assessment and report concluded she does not have Autism Spectrum Disorder (ASD). She is diagnosed with global developmental delays (GDD) which was already known to us.

We weren't really surprised with the final ADOS report. As her communication skills have improved and she is beginning to show more social interaction with both adults and kids, I think my initial thinking of autism was due to the developmental delays. My primary reason for inquiring about whether Lauren might be autistic was more to do with therapy options and schooling options than the actual diagnosis. There are specific therapy approaches such as ABA and IBI which are often used with autistic children and that have shown great success. To receive such therapy and/or to get government assistance for this therapy, you need a diagnosis of autism. Also, in Toronto, there are specialized schools and kindergarten programs available only to autistic children.

We spoke to the developmental pediatrician at length about Lauren. We know she is severely delayed in expressive speech, but I am happy to say we are starting to hear some word approximations and attempts to imitate verbally! When we ask Lauren what her name is, or we tell her to answer "say Lauren", Lauren will say "La-len". Well kind of. Its only really us that hear it and she doesn't articulate well so sometimes it sounds like "La-La", other times "La-en". But at least its a first step! So we've been working with Lauren every day, asking her what her name is, and of course what her sister's name is, and my name. We haven't worked on "dada" because she can't do "D"s. Its funny though, even though we know she can say "mama" as she will babble it now and then on her own (without meaning), and we know show knows how to make the "m" and "a" sound, she cannot say "mama" when we ask her what my name is. She uses her tongue and it sounds like "nana". I think she has a hard time with motor planning of her mouth and tongue, to get her mouth and tongue to coordinate, to do what she wants it to do. We have also been singing alot of nursery rhymes with her and she is starting to fill in some of the basic sounds like in Old McDonald: e-i-e-i- O. She will say the "o" part. She has also started to imitate "uh-oh". Part of the challenge is she only has a few consonants/vowels under her belt, so you can only make so many sounds with the same letters.

Overall the development report stated that Lauren has a really happy and easy going personality and the pediatrician said that was something we should be thankful for. Steve and I absolutely agree, as I've read and talked to other parents who also have kids that are special needs, but they also deal with behavioural issues like hitting, biting, and punching..and one mom actually showed me the bruises on her arm from her child!! So we are absolutely counting our blessings on Lauren's happy, easy going, lovable personality. We were told that Lauren will continue on her own path and will do things in her own time. Over the years, we have become more accepting of this, and while we know Lauren will need help along her journey, we know we have a really good support system of family and friends who are always there for us and supporting us.

I've finally stopped the comparison to friends who have 2 typically developing kids around the same age as Kayla and Lauren and the wonderment of what life would have been like. Its been mind over matter, but also as we have friends and family members going through difficult times with health, we know that we should be thankful for what we have today as life can always take very unexpected and sudden turns. Lauren and Kayla are happy and healthy and that should matter more than whether they are able to pull off their own socks, tie their own shoes or make a lasagna co-operatively.



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