Tuesday, December 9, 2014

Developmental Pediatrician

Over the summer one day after the horrible CPSE report was received and I was feeling some pressure, I called and referred Landon to Upstate Pediatric Development/Genetics and asked for Dr. Dosa; 1) I like to see females 2) I had her she was kind and listened to parents.  They sent a self addressed stamp envelope and I had to fill out a huge packet on Landon.  My little envelope they sent would not open, so I had to send my own and I called at least 5x this summer because it got lost somewhere in the hospital mail, but one day, I got a letter saying he was accepted and had an appt on 12/8 at 9:15.  The way my brain works is such, ok, that is three months from the day he starts school, I will take him if I need to.  I have since subsequently filled out paperwork for Logan as well and he has an appt on 2/23/15.  Landon hates doctors, so I always feel bad.  We parked at the hospital parking garage and he was whiny.  We have been to this hospital twice now, to see my dad, and to see Aunt Loo Loo.  We were going neither spot and he knew it. We got into the office, they took his height and weight with not much struggle, a little more difficult time getting his heart beat, but he did it.  I brought a bunch of toys and books and we waited.  The doctor entered; Landon shook her head and was pleasant.  He touched her head how he does to acknowledge people.  She was patient from the start.  She read through old records, had at least 50 questions for me, and acknowledged what I am doing for now.  She said: "There is nothing more you can do."  "He needs time."  We discussed his early difficult getting on solid foods as a precursor for apraxia, as well as a hard time feeding himself, and low tone, and really, everything led me to here.  Landon was about 15-16 months and I said to the other SLP at my building, Landon can't say "up." I don't know why I focused on that word, but I did. She gave me more ideas and off I went working with him.  A few months later, I realized he can't say up and everything became "dah."  He was whole hand pointing and he would say a word once. I remember at 17 months, he said "Water" clear as day as he asked for it, but I have never heard it again.  Anyways, Dr. Dosa listened.  She is a mom of a child with special needs and kind of teared up as she told me "You did nothing wrong. Look at him- he is so healthy, happy, and making progress. You are doing everything right."  So nice to hear.  She had him run, kick, jump, squat, she watched him do some fine motor tasks and listened to him speak.  At the end, she diagnosed him with : verbal dyspraxia, developmental coordination disorder, and mild generalized hypotonia.   She said he does not fall on the ASD spectrum at this time because he has intentional communication, and has since forever, is social with anyone who understands him, has great receptive language, and any deficits can be characterized under the "dyspraxia" label.  She told me he will be in a whole different spot in 2 years.  She recommended increasing the speech and getting a 1:1 aide.  I felt supported.  I felt like someone looked at Landon and got him and didn't just start judging because he can't speak well.  And so we continue on, but I have a paper now that can help me get the services he needs.

It was a hard day, but so much better than I expected, due to one doctor taking time to listen to a mom who aches for my children to just catch up, and I know she saw that.

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