Elliott’s been going to speech and occupational therapy for almost 4 months now and it’s been a topic that I’ve really wanted to blog about. I’m kind of glad that I didn’t post about this sooner though because we’ve learned so much in the past few months about Elliott through therapy, that my perspective on things are very different compared to the beginning of this journey.
“Journey” really is the best word to describe things and God has been very good to us along the way.
Leslie and I both knew that Elliott wasn’t talking at the same level as other kids his age. We know lots of kids both the same age and younger than him who were talking up a storm. At 2 and 1/2, Elliott was still struggling to say 2-word sentences and couldn’t answer questions with a “yes/no”. We weren’t certain that he could understand what we were saying to him. People would always tell us that boys talk later than girls, kids in bilingual households talk later, kids all catch up eventually – all well-meaning comments meant to reassure us that Elliott was fine. I appreciated their encouragement, but there was always this nagging thought in the back of my mind that something wasn’t right.
Then about a month after starting preschool, Elliott’s teacher, Teacher Janet, suggested that I get a speech evaluation for Elliott, because she noticed that he wasn’t very verbal and that she’d seen some of her previous students benefit a lot from help at an early age. So I scheduled a consult with Elliott’s pediatrician and she referred us to a clinic just a few doors down from her office called Pediatric Therapy Services. I actually went to their office right after our pediatrician consult and scheduled an appointment for the following week.
On October 8th, Elliott and I met with Christie, the owner of Pediatric Therapy Services, for about an hour. She interviewed me and also observed Elliott as he played with toys and tested his language skills. I really liked Christie and Elliott was comfortable with her as well so I thought that was a positive start. She contacted me about a week later over the phone to discuss her thoughts. She felt that Elliott could definitely benefit from speech therapy but we’d have to start therapy and then gauge what areas we’d need to focus on more. We had a lot going on with the remodel and Elliott’s birthday and family visiting so we didn’t actually start therapy until Nov 7th.
I had no idea of what to expect during our first therapy session but I was glad to be there to observe. Speech therapy is a lot more effective when parents see what’s happening during therapy and then are able to reinforce the same concepts at home. After all, therapy only happens once a week! When I’m there though, I’m only supposed to observe and not direct or influence so sometimes that’s challenging, especially if Elliott’s putting up a fight and doesn’t want to follow Christie’s instructions. I won’t go into all the details of what we do in therapy on our blog, because I’m keeping an offline journal of that, but here’s an overview of what our speech therapy sessions are like…
It’s very play-based and Christie often lets Elliott pick an activity or toy that he likes and then she integrates that toy/activity into therapy exercises. For example, during our first session, Elliott really liked a ball drop toy that’s similar to the ball drop toys he has at home. As he was playing with the toy, Christie would grab the balls as they fell and withhold them from him and make Elliott ask her for the ball he wanted, instead of handing them directly to him. Elliott would say “Eh, eh”, which means he wanted a ball and Christie would ask him “Which ball do you want?”. If he pointed to the green ball, she’d say “Oh, you mean, give green ball?” and she would encourage him to repeat “give green ball” before handing over the green ball. So, she would look for opportunities during play to get force him to talk.
Observing this made me realize that I can usually anticipate what Elliott wants and that I don’t wait for him to verbally express his wants before fulfilling them. Why would a child talk if he doesn’t have to? I felt bad about this and it’s made me re-evaluate many things I do as a parent that I think are “helping” Elliott but could actually be holding him back.
Using the same activity, Christie also taught Elliott the concept of taking turns. She would take a ball and say “My turn” and then after her turn, hand him the next ball and say “Your turn”. I started doing this with Elliott while playing with him at home, and after just one or two more sessions, Elliott caught on. He’s seen this concept in one of his Signing Time videos too and he would even ask to watch this video. Recently, while playing with someone (I forget who now), he turned to me and very proudly said “Elliott take turns!” :).
During a different therapy session, Christie tested Elliott’s receptive language skills. To backtrack a little bit, during Elliott’s speech evaluation, I expressed to Christie that Elliott seems to understand us but we were confused as to why he can follow instructions, but not answer our questions…did that mean he doesn’t really understand us? In order to test this, Christie brought out a toy, a Blue’s Clues playhouse that came with lots of accessories, such as a bathtub, a chair, a bed etc…Christie then would give Elliott instructions such as:
– “Elliott, can you put the refrigerator in the kitchen?”
– “Elliott, can you put the bathtub in the bathroom?”
– “Can you put the dog in the bed?”
The very first time, Elliott struggled a little bit because he wasn’t familiar with the toy and didn’t know for sure where each item was supposed to go. However, once Christie pointed out which “room” was which, Elliott could correctly follow her instructions. During subsequent sessions, Christie did a similar activity with him using a Fisher Price farmhouse and animals and he responded even better because he’s very familiar with animals.
This confirmed to Christie and I that Elliott’s speech delay was not due to a receptive issue, but problems with language expression. After about 2 months of therapy, I had a conference with Christie while Elliott was in OT, and she explained to me that Elliott’s receptive skills are fine and he has lots of vocabulary (mostly nouns and adjectives though) in his head, but there is some kind of disconnect between the thoughts he wants to express and forming the words with his mouth on demand. She believes that the reason why he can’t answer questions on demand, is because he doesn’t have a “sentence repository” to draw from even though he’s trying very hard to respond. Currently, when you ask Elliott a question, he’ll usually just repeat the question back to you. For example, if we ask him “Elliott, do you want some milk?”, his response will be “There is milk?”, instead of “Yes, I want milk”. He can usually tell us “No” if he doesn’t want something though. So what we are working on now is teaching him lots of verbs and modeling responses to him. Modeling responses involves activities like showing him a cow and asking him “Elliott, is this a pig?” and then saying “No, this is not a pig!”. And then following up with, “Elliott, is this a cow?” and then saying “Yes! This is a cow!”.
Something that Christie taught us early on was to also change the way we ask questions. Instead of asking Elliott “Is this a cow?”, changing the structure to “This is a….” and waiting for him to fill in the blank or giving him a hint with the beginning sound of the word is very effective. He can fill in the blank 90% of the time.
Elliott may also have some oral motor skill issues….one thing we noticed during his speech evaluation was that he can’t really stick out his tongue which could be affecting his speech. That could also explain his picky eating habits, although I’m not fully convinced that he’s not just being a picky 3 year old :).
After our first two speech sessions, Christie felt that Elliott could benefit from an OT evaluation because she suspected that his speech delay could also be a result of poor trunk tone. So the week before Thanksgiving, Elliott had an OT evaluation by Joyce (Miss Joyce to Elliott :)) and she felt that his gross motor skills (running, jumping, climbing etc) were great, but that his trunk tone and fine motor skills were poor. I also told her about how Elliott had been “shutting down” whenever we were in a store with a lot of people or at busy restaurants and she felt that he had some auditory and visual sensory issues that could be helped with OT. So we decided to start OT weekly right before his speech, which is also supposed to improve the effectiveness of the speech therapy.
To be honest, I was skeptical of how helpful OT could be because I hadn’t done too much of my own research yet and I didn’t understand the correlation between speech and the other muscle groups. Our initial OT sessions involved Elliott playing in a gym environment doing pretty much the same activities he already does on a daily basis. Elliott really enjoyed the sessions, but I didn’t feel like it was helping him very much.
I also didn’t see how his sensory issues were being addressed. Miss Joyce tried a brushing technique on him, which involved applying firm pressure while brushing his arms and legs using a soft bristled brush. She also did some joint compressions. Elliott didn’t seem to mind this, but it also didn’t have much of an affect on him. So we abandoned that after two sessions.
At school, Elliott has been struggling with participating in circle time and he always refuses to sit down for snack time and instrument time. I shared this with Joyce and asked her for advice and she suggested having him wear earphones during these times, but I didn’t feel that was really addressing the deeper issue – more of just a temporary band-aid.
I shared with my women’s group about how I was feeling and my friend Liv forwarded me a blog written by a mom of a son with SPD (Sensory Processing Disorder) who was in therapy for many years, but now is attending public school and is managing really well. She wrote on article on the topic of speech delays which was very informative and helpful. It was very uplifting to read the thoughts of another mom who’s already been down this road and has hindsight!
At some point in late Jan/early Feb 2014, (and I don’t remember the exact sequence of events or thoughts that led me to this) I had one of those rare A-HA moments of revelation! I think it all started after that parent conference that I had with Christie in Jan – I told her that my main therapy goals for Elliott were 1) improve his expressive speech and 2) enable him to attend a normal kindergarten class. And we talked about my big fear – is Elliott autistic? I think deep in my heart, this has been my biggest fear all along. I’ve told myself over and over again, that it’s OKAY if Elliott is autistic – that he’ll still have a happy and bright future ahead of him and that I’ll be able to handle it. However, I was still fearful of an autism diagnosis and couldn’t shake off the worry completely. During my conference with Christie, I asked her if she thought Elliott showed signs of autism and she confessed that initially, she and Joyce were a bit unsure of whether some of his tendencies were red flags for autism but after working with him longer, they both felt strongly that he’s not on the autism spectrum. She said that Elliott seeks interaction with people and socially engages which is the opposite of what you would expect from an autistic child. Autistic children tend to withdraw, not make eye contact or initiate social interaction. Then, I asked her, what do we make of his other behaviors? The shutdown behavior when we’re in crowded places? The unwillingness to participate in circle time and snack time? Is there a condition or name for this type of behavior? And she said yes, it’s called Sensory Integration or Sensory Processing Disorder (SPD). In Elliott’s case, his form of SPD (there are many forms) is that he has difficulty coping with too much external stimuli, such as noise or people, and he shuts down or tries to escape the situation.
When I heard this, my first thought was, “What? How come this is the first time I’ve heard this? Why wasn’t I told that Elliott has an actual disorder?”. Then I had a slew of questions I wanted to ask her – how can I learn more about SPD? Are there books there that I can read? Etc. etc…
Later, when I talked to my friend Grace who is a pediatric OT, she explained to me that OT’s and speech therapists are not allowed to diagnose patients and that SPD is a little controversial and that some doctors don’t believe it’s a true disorder or something to that extent. So, I felt better after that, knowing that Christie and Joyce weren’t holding back information from me on Elliott’s condition.
I then began googling “SPD” and reading everything I could on the topic and started reading a booked called “Raising a Sensory Smart Child” which was incredibly helpful. As I read the first few chapters, describing behaviors of kids with SPD, I felt like the authors of this book were writing about my Elliott! Learning more about SPD has shed so much light on Elliott’s quirks, even ones that presented themselves when he was a baby!
For example, Christie told me that kids who have SPD were typically “colicky” babies – babies who had very sensitive nervous systems and were unable to calm themselves. I couldn’t help remembering all those times I couldn’t figure out how to make Elliott happy after trying everything and feeling very inadequate and helpless as a mother. Now, I finally know the reason why!
His shutdown behavior at large/noisy venues is typical of kids with hypersensitivity SPD, as is his dislike of instrument time and circle time. There is too much visual and auditory stimuli for his immature nervous system to handle and he just can’t tolerate it. Control is a key factor here. If Elliott cannot control the level and amount of external stimuli, the less he’ll be able to tolerate the situation.
Friends that I’ve talked about Elliott’s therapy with have been surprised at my positive attitude – I’m typically very anxious and high-strung about this type of stuff – but I tell them that learning about Elliott’s disorder has actually lifted a huge weight off of my shoulders and I feel like I am finally starting to truly understand Elliott and his quirks. Without the SPD “diagnosis”, I thought that Elliott was being a difficult preschooler and I couldn’t understand why he didn’t want to participate like his other little friends did. In terms of childhood development, I was most familiar with “normal” and “autistic” and nothing in between. Now I know that a child can have SPD and developmental delays and not be autistic. That fear and worry of Elliott being autistic is quickly fading. Instead of only worrying about what’s wrong with him, I’ve got therapists and tools to help Elliott and help me parent differently. I’m approaching parenting from a different place now. At preschool, I used to push Elliott to participate in circle time – now, I gently encourage :). And if he’s feeling overstimulated and doesn’t want to, then I let him retreat to the play kitchen where it’s quiet and I’m totally OK with it. At instrument time, I ask him if he wants to go inside and if he says no and gets agitated, then I calmly take him outside to the playground and tell him it’s OK and we’ll go back inside after the instruments are put away. These situations are so much easier now that I’m tackling them from a place of understanding. I’m not as frustrated or confused, although I do feel sad sometimes when Elliott’s sensitivities mean we have to excuse ourselves from things, like a recent class field trip to the Cupertino Library (he didn’t want to participate in storytime) and kid birthday parties. Sad for Elliott, not myself, that SPD prevents him from experiencing these types of fun events.
Four months into therapy, Elliott’s speech has improved a lot! He’s able to form 3-4 word sentences now and like I mentioned earlier, we’re working on teaching him lots of verbs so he has larger arsenal to choose from :). We’ve since switched OT’s from Miss Joyce to Miss Britney (we switched therapy days from Thurs to Mondays) and that’s actually been a great change because Miss Britney has been challenging Elliott a lot more and working on desensitizing him to noise so I feel like OT is more focused now.
I’ve also been working with the Cupertino school district to get Elliott into the special education system in preparation for Kindergarten. There are some special documents you need to have in place in order to receive services like speech therapy in school, or modifications such as allowing Elliott time to be in a quiet corner if he’s overwhelmed. So, more to come on all of that!
I’m excited to see how Elliott will change this year :). And how Leslie and I will change as parents too!
Here are some pictures I took of Elliott during an OT session with Miss Joyce: