Tuesday, October 15, 2013

Early Intervention, Speech Therapy, and Sensory Processing Disorder

It's been three months since I've updated the blog. Partly because I stopped doing monthly updates and photo shoots after Whit turned 1, partly because we've been so busy that blogging is low on my to-do list when I actually have free time.  But I feel like it's time to explain one reason why we've been so busy lately...

Just before Whit's birthday I was sent a large packet of development surveys from the UNC-Chapel Hill Pediatrics Research Dept. It was the university chosen by the Education Department to fulfill a study on the behaviors and development of children at one and two years of age. The surveys were voluntary, but I decided to fill them out and send them in- you know, for the sake of research.

I expected he had a speech delay since by 12 months of age Whit had yet to say a single word, didn't seem to babble much at all, wouldn't look where we pointed, didn't seem to understand basic sign language, wouldn't respond to sign language or voice commands, didn't wave hello or goodbye, or even look at the right person when we said "Mama" or "Daddy". About a month after his birthday, though, I got a call from the study's head child psychologist informing us that Whit qualified for further evaluation based on not just speech development, but two other developmental areas! One, I was prepared for, three, I lost it.

In the same week (Whit was around 13 months old) I had an hour-long interview with a specialist about his habits and development, I spent around 4 hours filling out more in-depth surveys, Whit met with a speech therapist from the children's rehabilitation center (based on the recommendation of his pediatrician), and had a three-hour in-person, taped assessment for UNC. Needless to say, I spent the week feeling really terrible as a mother. How would Whit know the word "spoon" if he still didn't understand "eat"? Should I be teaching him "spoon"? Does Whit exhibit social behavior towards other children? No. Do you do anything to change this behavior? Well, I don't like it, but what the heck am I supposed to do about it?? Ugh... what a nightmare. But I was equally grateful to be in a state that provides this assessment and help so we can become more aware of Whit's needs and how to help him.

The results of his in-person assessment took a few weeks to be reviewed and get back to us, and gave a very thorough analysis of his current development. He had perfectly average 13-month problem solving skills, but 6-month speech development and 5-month social skills. In addition, he had many factors from the Autism spectrum, and they recommended a separate evaluation from our local Children's Developmental Services Agency because they noticed a significant lack of motor skills- especially in how he carries his body when walking and moving and how he uses his hands (he keeps one hand closed and pulled toward his side at almost all times).


Fast forward two months:

We see a speech therapist once a month for now, but will go more often once he hits 18 months.

We were randomly assigned to a group of research participants who would receive in-home intervention for eight months, then get re-assessed at two years along with the group of participants who will not have in-home intervention to decide if they were able to pinpoint and help pivotal behaviors and what difference it might make. I was thrilled to be assigned to this group- bring on the experts! We now meet twice weekly for an hour session with an early interventionist. She is a really friendly woman, and Whit really enjoys having her around. We talk while he plays with his toys, and each session we talk about what is new with him and she explains a new pivotal behavior technique we can work on together. We have learned and practiced things like mimicking Whit's behaviors, mimicking his speech, taking turns while playing, making eye contact, and other things to help Whit develop his social and communication skills. I am so grateful for this extra advice! I guess I just didn't know how to play with my child. I didn't realize that these basic interactions will build Whit's confidence and teach him about the give and take necessary for both speech and social interactions.

One thing we have really focused on, so far, is Whit's sensory input. After these couple of months of observation it seems pretty apparent that Whit is not on the Autism spectrum (at least not classic Autism), but that his behaviors and attitude are a result of a Sensory Processing Disorder. Basically, he doesn't process the stimulus around him, so he isn't understanding and interacting with his environment very well- which frustrates him. He has a combination of Hypo- (has a very high threshold for understanding, so he craves more stimulus to experience) and Hyper- (has a very low understanding threshold so too much stimulus is upsetting) Sensory conditions. He seems hypo-sensitive orally, for instance. He loves spice and sour foods, foods with textures, things he can bite, using a straw, and a recorder or other toys meant to be blown or chewed on. He keeps food squirreled away in his cheeks because he likes the feel of something in his mouth, and spits out anything smooth because he doesn't sense that it exists as easily. All of those behaviors point to him seeking out ways to experience more with his mouth.

Unfortunately, he seems hyper-sensitive with his touch. He loves his stuffed animals, will rub his head against the couch or a blanket, wants to touch everything, but hates when I hug or kiss him. I think he is the cutest thing in the world and am addicted to touching him, but he recoils from human touch! I think he's come to associate me with rough, random grabs and smooches, so he cries when I try to pick him up now, and roughly pushes or slaps me away when I try to come close to him. I've been saying since I was pregnant that I was most excited for my child to run up to me, give me a tight hug, and say "I love you", but now I feel like that may never happen. I try not to make a big deal of it, but it really breaks my heart that he won't let me touch him and greatly prefers being with Ben to being with me. I think it has to do with losing Eleanor- I really want to squeeze my love into a child, but can't. I know we are blessed in so many ways, so I hate complaining, but honestly- it's a huge challenge for me.

Besides Whit's 2 or 3 appointments a week, we keep him on a strict schedule- which I think really helps. He still takes 2 2-hour naps a day, so I'm pretty inflexible to see friends. Oh well... I don't think he'll always need so much attention!

Does that give you an impression of our daily lives?