Sunday, March 2, 2014

Results of the Eval

The girls and I survived our solo trip to Billings this week; three years ago I would never have imagined I'd travel 5 hours alone through the middle of nowhere in my 3rd trimester with two toddlers.  Now... eh. Box of extra blankets/winter gear/kitty litter in the back, DVD player propped on the armrest for the kids, box of snacks in the front seat... And I've got the getting into the hotel alone down to a science! I was so thankful, though, that the roads weren't as bad as I'd feared they'd be.  Billings got over 6 inches of snow just a couple days before we arrived, and was supposed to get another 6-12 inches the day we left, but I only drove about 15 miles with scattered ice/packed snow, except for the side streets which were still completely covered.  Thankful for prayers and sunshine!

So, the autism evaluation.  I'd been dreading it since November.  But I left completely happy with the results, which were... nothing!  They didn't make a single diagnosis.  No label.  *happy dance*

Here's what we did learn. (Which, I must brag... is exactly what I'd said after my own research.)  She's delayed.  Well, duh.  She has several red flags for autism spectrum disorders.  That is what people who are only around her briefly focus on.  However, there are two categories required for an ASD diagnosis.  One is social interaction/communication.  This is where her red flags are.  She definitely has problems in this area.  The second is behavioral rigidity.  This is where we find the classic sign of lining toys up instead of playing with them.  And while she does show a few problems here, she displayed none while she was being evaluated.  So they do not feel they can diagnose her with ASD at this time, and feel doing so or putting any other diagnosis on her would be premature, since she'll be having surgery that may impact her delays. 

I am perfectly okay with this.  Normally, I want answers.  But in this case, I want the treatment first and then we can consider if answers are actually needed.  They would like to see her back 6 months after her surgery to re-evaluate and see what's happened.  I'm all for this and think it's great that her progress (which I fully expect to see) will be documented so well.   

So a bit more detail... my report on her behavior does indicate some of the behavioral rigidity that is needed, but I didn't feel she exhibits enough to put her on the spectrum and they agreed with me.  I frankly feel that the difficulties she has in this area have been caused by us as parents.  I mean, you can't take a child through 4 different houses in a single year and expect her to come through completely unscathed.  In addition, she is my child.  And she's her daddy's child.  And we both can be a little OCD.  We're talking the child of a mom who sorts her M&M's by color.  The child of a dad who breaks his fries into two even lengths and then swirls them in the ketchup in a very certain manner, twice one way and once the other, before eating them.  So if she wants to line up her Teddy Grahams before eating them and insists on all doors being shut, I think she's entitled to do so without being labeled as autistic! And for once, the medical world agrees with me.  *sigh*  What a refreshing change! 

As for the social communication area, this definitely needs some work.  I knew she was weak in this area and that's why I was willing to go through this eval, in hopes of getting some tips on what I can do to help her.  She needs a different mother.  I'm a very reserved, sedate type of person.  But Ladybug doesn't respond well to that.  As the child psychologist discovered, she is perfectly capable of totally ignoring that type of person.  But the more animated and dramatic she got, the more Ladybug responded and interacted.  So I am going to have to work on that myself.  Ah, what we do for our children... =)  This will also be important for me to keep in mind if we ever have a choice in her teachers/therapists.  

Her communication is of course a problem area, but I was pleased to hear they feel she is "primed for language development."  It pains me that we are in an area where there is no speech therapy available until age 3; if we were in TN, she would be in speech no doubt.  But since we are where we are, they gave me some tips and resources that will let me help her myself until she's old enough for professional speech therapy.   At this point, despite the fact she is very difficult to understand, they said not to worry much about articulation but to just focus on expanding her language.  I've always practiced the "no baby talk" rule because I believed that was best for language development, but apparently, at least in Ladybug's case, I need to revert to toddler-speak.  Because she will repeat back anything I say, I'm to break my sentences down to 3-4 word phrases.  Then, when she repeats back 2-3 words, I can repeat what she said and add a word, and so hopefully get her to build her phrases.  

This sounds incredibly easy, but it's hard to put into practice!  For example, she's no longer in a crib but if she were, I'd go get her and normally say "Are you ready to get up?  Are you hungry?  Do you want to eat some breakfast?"  Instead, I need to break that down to the bare essentials.  "Ladybug want out?  Ladybug hungry?  Ladybug want eat?" And give her time to repeat back each phrase if she will, repeating back with correct pronunciation what she said and adding an additional word.  And at some point practicing "me" vs "you" and trying to connect those prepositions for her.  Perhaps this comes naturally to some people, but after speaking to her in full adult language for 2 and a half years, this is a hard habit to change!

Her weakest area was actually pretend play.  You never realize until you go through this with your child how important pretend play is for development.  When they told me what she's "supposed" to be doing I was floored.  I've been thrilled to see her imitate any pretend play at all.  But, the heartbreaking yet awesome thing is her play peer would be ~18 months.  Well, I have one of those built in!  I expressed concern about the complete lack of interaction with other children, despite how well she interacts with adults, and they explained that if I have her in a room with a child her age, they are so far ahead of her in their play skills that they are going to ignore each other.  What I need to do is focus less on age and more on skill level.  This isn't a case of the child 4 steps ahead of her being able to help her along like I thought; I need a child who is at most one step ahead.  Turkey is the perfect play partner for Ladybug.  And the examiners showed me some very practical ways that I can encourage interaction between them and help Ladybug to that next level of play.  

Overall, I was very impressed with the evaluators.  Not once did Ladybug show stress by her hand/mouth movements or biting herself.  She actually had fun.  I could tell she was mentally worn out towards the end, but the way they handled everything meant no meltdowns.  They provided excellent care for Turkey, thankfully by a retired RN who recognized that she was really sick and had the developmental pedi take a look and listen to her to make sure we were safe to head home.  (Pretty bad reaction to her 2nd flu vaccine I think)  And they explained their decision about diagnosis so well and gave me lots of practical tips to take home.  We kind of wondered if we were wasting our time since we're having surgery done no matter what at this point, but I definitely feel it was beneficial.  Plus, the developmental pedi fully agreed that surgery out of state is the best option for us, which was nice to hear. 

1 comment: