If you missed the first four installments you can find them in this thread.
During Ryan’s appointment with the pediatric ENT, an audiologist lent words to what I was already thinking and fearing. In a perfect storm of good timing, we had a private speech therapist start working with him the week after the ENT appointment. Prior to her ever coming into our home, I had discussed Ryan’s history, past evaluations and the ENT appointment with her.
She sat with us for almost two hours and observed Ryan playing in our home, interacting with me, etc. and she noticed some things that were just “off” developmentally. From the way that he walks, his need to hold toys in his hand, the lack of eye contact that he was making and the lack of attention he paid her (a stranger in his home), etc. She suggested I call Early Intervention again and ask for another evaluation to be done.
I had given her copies of all of his previous evaluations and she reviewed them and told me that the previous screener had marked off that Ryan was given a multidisciplinary screening (i.e. he had been screened for behaviors, speech, motor skills, etc.) but that only a speech pathologist had actually conducted the screening. In doing so, the speech pathologist was claiming a multidisciplinary evaluation, when in fact it was not. And she told me that a speech pathologist was not qualified to screen him in these other areas. She told me to ask for a new screening with a full evaluation team and to also ask for a sensory profile specifically, which would measure Ryan’s response to specific sensory stimuli.
I credit this private speech therapist with Ryan qualifying for services. Sure, I advocated for him and made the calls and kept fighting for someone to help him. But she gave me the bullet points and the terminology that got Early Intervention to listen to me. And she gave me the confidence to believe that I wasn’t just a crazy, overbearing mom looking for something to be wrong with my son.
Also in a perfect storm of good timing, Ryan’s 30 month well child fell on the same week as his private speech evaluation. I went over all of the information from the private speech therapist and the audiologist with our pediatrician. Our pediatrician is so wonderful that I could honestly cry when I think of the love I have for that man. He gave me a lot of insight as to what we may be dealing with — he suggested something called Verbal Apraxia which was later ruled out by our speech therapist and also a diagnosis called PDD-NOS.
PDD-NOS stands for Pervasive Developmental Disorder – Not Otherwise Specified. It is a “mild” form of autism.
I think I need to stop and give that pause. It was at this point in time that I was realizing, maybe for the first time, that my son may have autism.
PDD-NOS is not something that they’ll diagnose until he is fully talking. A child with PDD-NOS (or really any form of autism) will not be able to understand the mechanics of objects and instead they will make associations. So, for example, if you ask a child who is developing normally to say the first thing they think of when you say the following words, here’s how it would go.
Adult: Pen, Child: Write
When you ask a child with PDD/autism to perform the same activity here’s what it would look like.
Adult: Pen, Child: Crayon
This is because their brain doesn’t form the same pathways for processing and identifying information. The pathways become very linear. So associations form in place of functions. Until Ryan’s conversational language improves we won’t really know a lot about what his diagnosis will be. And for now, I am fine without a formal label.
Our third (most recent) evaluation with Early Intervention happened in mid-July. This time there was a whole team that evaluated him. It was *truly* a multidisciplinary core evaluation. He had a certified school psychologist, an occupational therapist, a speech pathologist and a social worker do his evaluation this time. And our Early Intervention case worker attended the evaluation as well. I think she wanted to see what I was making all the fuss about, and even she saw the things in Ryan that I had been expressing for years.
With these evaluations they do not say the children “fail” the test. Instead, they evaluate it by orders of difference. So there is some difference or a definite difference that is noted against standard ideas of development. Ryan was shown to have a “definite difference” in the following areas: Communication, Motor Skills (sensory processing falls into this category), and Social Development.
Here’s what this means. He has trouble stringing multiple words together, making certain letter sounds and generally communicating his needs. He has issues with oral sensory processing (needing to put things into his mouth), auditory processing (sometimes not hearing/listening, needing to be touched to get his attention) and registration (tuning into social situations, he actually walks into things sometimes like the wall or a table!). In terms of social development, he was shown to have a clinically significant issue in the areas of withdrawal (meaning he doesn’t readily approach adults or kids that he doesn’t know to interact with them) and pervasive development problems.
They drew up a 15-page report that was filled with everything I already knew. Yet reading it was like swallowing knives. This final evaluation qualified him for Early Intervention and entitled him to 8 hours of in-home therapy per week with a physical therapist, occupational therapist, speech pathologist and special education teacher. Since the kids participate in several physical activities per week (gymnastics, dance, swimming) we deferred the physical therapist for now, so as not to overwhelm him completely. The rest we are working into our schedule.
This is going to make such a HUGE difference for him, I just know it.
We have an appointment with a developmental pediatrician in June 2014. Yes, they book out over a year in our area. My plan is to bring all of Ry’s evals and all of his notes from his EI therapists and see what they think based on where he started and his progress.
For so long I have just been managing the chaos that is my life that even I didn’t realize how significant some of Ryan’s behaviors have been. Even more than I thought they were. I am thrilled that maybe in the next year, he will put down a train and walk to the door and put on his shoes. Or not hit me. Or not have an outburst when I take a car out of his hand to get his shirt off.
Small things.
He is such a wonderful, loving little boy. But it almost feels like his mind is trapped sometimes and he’s frustrated. Other times he’s just triggered because we took away a security object or lord knows what.
I do not think Ry has autism. Not because I am in denial about it, but because I think we are dealing with a sensory disorder and I can’t tell if the sensory stuff is magnifying his speech delay. Or if the speech delay is magnifying the sensory stuff. Only time will tell.
What I do know is that I have a little man who hugs me so tight for no reason at all. That climbs in my lap just to hold my hand. That looks me dead in the eyes before kissing me with the fullest lips. He hugs his sisters readily. Rocks the baby often. Laughs from the bottom of his soul.
He is one of the most beautiful people I have ever known. From the second that he left my body and I waited for his cry and wondered out loud if he was real, if he was mine, I have been in a kind of love I never dreamed possible. I don’t know what lies ahead of us, but what I do know is that we’re strong enough to get to the other side. And that I am lucky that I get to grow through this experience with him.
