We had another Developmental Pediatrician appointment yesterday. The hope was that we would get a more concrete diagnosis for Trevor, but that didn’t happen. This was a follow-up appointment scheduled a few weeks after the ADOS test was administered by an OT (if you’re unfamiliar with the ADOS, it is a test for Autism). The basic conclusion of this appointment is that Trevor is a puzzle. Our Developmental Pediatrician is confident there is something more going on with Trevor than just his chromosome disorder, but that he doesn’t know what “it” is. He feels like he’s missing something and wants to get to know Trevor a little better. I do appreciate his honesty, but I would much prefer having an answer.
Trevor scored one point below the cut-off for ASD on the ADOS. The doctor said that should be encouraging, but when he actually observes Trevor he sees those major red flags for Autism. The OT who did his ADOS eval seemed to think Trevor’s social delays were completely due to his trouble with sensory integration, but the Developmental Pediatrician (and I) don’t think that’s the case. He truly has social deficits that you can’t chalk up to Sensory Processing Disorder. And his communication is atypical as well. He can name all 50 states and their locations, but he can’t tell you he’s hungry or tired. He still uses a lot of echolailia as well. But Trevor also has these other wonderful qualities that make it hard to say that “it” is Autism.
In addition to the “is it Autism or not?” question we had hoped we’d get an answer regarding his motor delays as well. Trevor has right-sided weakness and we thought we may end up with a hemiplegic CP diagnosis because of this. But his MRI was clean and the doctor doesn’t see his motor issues as a clear-cut case of CP either. We will be hearing more from the Developmental Pediatrician by the end of the week (he wanted to consult with a colleague before he gave us all of his recommendations) but it looks like we’ll be adding a new specialist to the mix: a pediatric physiatrist. The physiatrist should hopefully have better insight into Trevor’s delayed and asymmetrical motor development.
My boy is unique. And while I would usually consider that a good thing, when it comes to the medical community, unique is not good. It is nothing but frustrating. I don’t want to force a square peg in a round hole. If he’s not Autistic and/or doesn’t have CP, then I don’t want him improperly diagnosed. But I want to know what is causing my son’s atypical development. Why does he have skills that kids twice his age don’t even have yet, but at the same time not have skills that kids half his age have already mastered?
So for now we just keep plugging along. We go to therapy and follow through with it at home. We go to whatever specialists the doctors think he needs to see. And we live our lives. As frustrated as I am with living in limbo I know that whatever diagnosis Trevor ends up with will not define him. It is just one part of him, and we need to remember that (although it’s much easier said than done!).
And on a side note, wish us luck tomorrow. We have yet another doctor appointment tomorrow, this time with a pediatric dermatologist. Because apparently even his rashes are atypical and can’t be dealt with locally. We have to drive out of town to a children’s hospital to have him checked out. Hopefully it’s not another big waste of time and they can actually help us.
A lot of the gross motor therapy and sensory activities I do with Trevor require body awareness. While Trevor is great at labeling pictures in a book, he struggles with motor planning and so he has a hard time knowing where his own body parts are. To work on this I came up with a fun activity for us to do this morning.
What You Need:
- Large piece of paper (I used the paper roll from his easel)
How To Make It:
- Cut a piece of paper large enough for the child to lay down on.
- Tape it to the floor.
- Have child lay down on the paper.
- Trace child’s outline with a crayon.
- Have child help you label body parts on the drawing, and on the child themself.
After we played with the drawing for awhile I taped it to the wall. I’m planning on doing more labeling activities with Trevor, maybe using stickers to help motivate him as well (put the sticker on the head, tummy, foot, etc.). Hopefully the more aware Trevor becomes of his body parts, the easier it will be to work on motor planning games and activities with him.
Trevor had his testing for the school district today. Because we live in such a tiny district they don’t actually do the testing themselves, but contract with our local EI center to do the testing. This makes the transition process even more drawn out that usual. Although his testing was done today, we don’t meet with the school district to get the results of the evaluation for another 3 weeks. And so the waiting game continues…
Trevor did a great job throughout the evaluation. He showed just how damn smart he is. The evaluators remarked as they were doing the cognitive testing that they never get so far along in the book. He was doing some 5 year old skills! However, when it came to motor tasks he conversely showed just how behind he is in those areas. He was so frustrated with the fine and gross motor tasks. It breaks my heart to see him struggle like that. Although we didn’t get the results as far as the school district goes, the EI team doing the eval did tell me whether or not he would qualify for continued EI services with his scores. He continues to qualify in gross motor, fine motor, adaptive and social/emotional. He doesn’t qualify in cognitive (which I knew he wouldn’t), but surprisingly he doesn’t qualify in communication either. He has such scattered communication skills – he is obsessed with labeling and therefore has an amazing vocabulary, however he doesn’t communicate basic wants and needs (never says if he’s hungry, thirsty, tired, wet, needs to use the potty,etc.) So even though he has some wonderful strengths in the language department (which of course I’m thrilled about, I love seeing his hard work pay off), he does still struggle with functional language and uses a lot of echolalia. I was glad that the SLP told the school district rep that while Trevor’s scores don’t indicate a communication delay he does have communication issues and that they need to keep a close eye on this area.
I think the most frustrating part of this whole ordeal, even more frustrating than how long it takes to go through the entire evaluation and IEP process, is that the school district rep constantly reminds you that his delays have to affect his ability to access his education. So even though his scores show he is globally delayed and needs help it’s not a guarantee he’ll get the help he needs. And on the flip side there are areas (namely his significant sensory processing issues) that they don’t even look at during the evaluation. And his sensory issues have a huge affect on his ability to access his education. He would not be successful in a typical preschool classroom based solely off his sensory processing deficits, without even looking at his other delays. I feel like all I ever do is fight for Trevor to get the help I know he needs. The help the numerous doctors and therapists have told us he needs. I am so tired of being an advocate for my son. I really hope I’m over analyzing the situation and the rest of our transition process goes smoothly. I hope that I don’t have to fight to get goals in his IEP, and that he is successful in the next part of his journey.
Trevor has a diagnosis of Sensory Processing Disorder. As you all know, it greatly affects his (and our) daily life. Unfortunately SPD isn’t a recognized diagnosis in the DSM. This means that Trevor and other people with SPD are not getting the support they truly need. The APA is taking public comment about the inclusion of SPD in the latest revision of the DSM. Well known SPD advocate Lucy Miller wrote this letter, giving the latest status report on getting SPD in the DSM. To find out more about what you can do to influence the APA’s decision, just go here. Please help support Trevor and all of the other people who are affected by this disorder.
Last night I decided that since I’m a big, sappy, hormonal, pregnant mess this Mother’s Day I wanted to start a new tradition and write to my sweet Trevor and this unborn baby today.
I love you so much. You made me a mother and I am forever grateful for that. No matter the heartache and hardship we have faced together, being your mom is the best thing that ever happened to me. I am so proud of all you do. You have to work harder than most kids, but you do it with such vigor and grace that you inspire me to face my own life in the same way.
Yes we have our hard times. And apparently Mother’s Day is no exception to that. Today you woke up having one of your rough mornings. You are having a hard time communicating your wants and needs, instead reverting back to a lot of perseverative speech, echolailia, and tears. But through it all you are still wonderfully you. We played in the sandbox and you had a breakthrough, instigating some pretend play all on your own! Then we enjoyed the sunshine even more and turned on the sprinkler. My heart was filled with joy watching you play outside. You have come so far being able to walk on the uneven grass. I love more than anything watching you bloom. Seeing you smile and your hands flap with happiness makes me so incredibly happy too.
And to our Little Turkey,
I feel so blessed to be starting a new journey through motherhood with you. I can’t wait to meet you and watch you grow into the person you are meant to be. I love you already, though I do have to admit I’m a little nervous about having two little lives to care for. But if there’s anything I’ve learned from your brother it’s that you learn as you go. There is no sense in worrying about the future. I hope I can teach you and your brother as much about life as I know you’ll teach me.
After watching an episode of “Curious George” with Trevor in which George designs a car wash for his toy cars I was inspired to set up a Car Wash for Trevor. George’s Car Wash was pretty elaborate, but I decided to go simple. I filled a plastic under the bed storage container with water and dish soap, then added in a sponge, a cup, and Trevor’s plastic trucks. He had a blast playing with his Car Wash and it couldn’t have been an easier project for this tired pregnant mama to assemble. The Car Wash is a great way to work on pretend play skills, do some fine motor work (pouring water, squeezing the sponge, etc.) as well as to do some sensory exploration with the water and bubbles.
Checking out the Car Wash:
Squeezing the sponge:
Washing a truck (Trevor does so much better at pretend play when he has a concrete idea in his head. We watched George wash cars, then he was able to do it too):
Rinsing another truck:
He washed his cars a few times, but mostly he enjoyed putting the trucks in and out of the Car Wash. He loves to move his toys around:
Proud of his work:
Enjoying taking them back out again:
Some nice sensory and fine motor play popping bubbles:
In light of Trevor’s delays and chromosome disorder we were faced with some decisions to make during this pregnancy. My doctor suggested we do some extra prenatal testing to give me peace of mind about this baby’s development. Todd and I decided to go ahead with the non-invasive testing (the NT scan and some additional blood work).
Last Friday I went in and had the ultrasound done, as well as the first-trimester blood work. It was wonderful to see Baby #2 moving all over the place! Baby has a strong heartbeat and at least to my untrained eye everything looked great. Today we got the confirmation that all of the tests show that this baby is developing within normal limits so far.
I know that a normal NT scan doesn’t guarantee that this baby will be neurotypical, but it does make me feel much more confident. I love Trevor more than anything, but seeing him struggle is really hard. I hope that this next baby won’t have to struggle like he does.
And to add to the good news the measurements taken during this ultrasound caused the doctor to move my due date up a week. So now I’m 14 weeks along and officially in the 2nd trimester! Hopefully this means more energy and less nausea 🙂