The Puzzle That is Ryan . . . and Kevin . . . and Andrea . . . and more Ryan . . .

Ryan has been diagnosed as having "sensory issues." The formal name for this is "Sensory Processing Disorder" (SPD). At this point, the condition appears to be having a significant impact on his activities of daily living and development.

Children who have this condition have the same use of their senses as you or I, but their brains process sensory stimulation differently. The condition also manifests differently in each child. Some children require more sensory stimulation, and some less. Some children are only affected in one sensory category, while others are affected in many. Furthermore, although this condition can be the sole diagnosis given to a child, it is commonly associated with other conditions like anxiety, autism, and ADHD. Ryan will be undergoing psychological testing this fall/winter, when he's closer to age 2, to determine if a further diagnosis is appropriate.

I'd like to give more information at this point about how Ryan fits into the SPD spectrum, but I'm still waiting for the formal report from our Occupational Therapist (OT). I know she can explain it much better than I can. For now, I can share some examples of how SPD has manifested in Ryan, and what we are starting to do with him in terms of therapy.

The most obvious way that Ryan's SPD affects his daily acivities is in eating. Ryan is 18 months old, and still only tolerates pureed baby fruits and vegetables (beginner stage), and baby oatmeal. He will gag on the oatmeal if it's lumpy. He will not eat the pureed baby meats. He shows no interest in what others are eating. He will not reach for the spoon or try to feed himself. In fact, he will grab items off his tray and throw them on the floor. Each feeding usually begins with him crying, pushing away the spoon, and shaking his head "no," until we can get the first bite into his mouth. Then, he will usually tolerate a feeding. In terms of drinking, he will only drink milk, and only from a bottle. He refuses cups (will throw them down) and turns his head away from the bottle if it has anything besides milk in it. Furthermore, he only likes his home high chair. He screams when we try to put him in a booster seat or even high chairs at daycare or other people's houses. It's important to note that his distress is real and intense. It is not a tantrum; he is not a picky eater. His brain does not accept/know how to handle the process of feeding and exploring new textures.

We have had some small but significant progress in the last week or so. We have seen Ryan mouthing toys, so Gram and Papa tried gently rubbing an arrowroot cookie on his lips. Amazingly, he started to lick it! He even took a tiny bite. He held it in his own hands and played with it a bit. They have managed to get him to do this twice. I have since gotten him to do it twice, but for very short periods (10 to 30 seconds). The video below shows last night, when I tried to give him a rice cracker. It shows some positives, and some typical reactions: he holds and plays with the cracker a lot; he stays content for a while; he even puts it in his mouth for a split second. However, he throws it down several times, refuses to put it in his mouth again, and ends by getting agitated and shaking his head "no." I taped about 5 minutes, but cut it down a bit, just to give you a feel for what we're trying to do with introducing new foods. (It also gives you a sense of some of Ryan's quirky mannerisms.) It's an extremely slow process, which requires incredible patience and calm. SPD makes something as natural as eating ridiculously complicated.

Ryan's SPD manifests in social ways as well, especially in terms of communication. Ryan does not usually respond to his name being called. He is also uncomfortable with people being in his personal space, and making eye contact with others. He has lost speech; he said "mama" and "dada" around 6 months of age, and now makes no intelligible speech sounds. He coos and squeals and cries to express himself. He does not point to things he wants, and only within the last week or so has begun to reach out for or grab at things he wants. He doesn't enjoy reading picture books with us, or playing interactive games like peek-a-boo or patty cake. He does, however, like to listen to music and singing or humming. Those sounds seem to calm him, and sometimes get his attention. He also repsonds well to tickles--he loves tickles--and that's the easiest way to get a laugh or smile out of him.

In general, Ryan is a happy baby. If you leave him be, his basic needs are met, and he's in a familiar environment, he's calm and quiet. However, there are many things that agitate him, due to the SPD: new food tastes/textures; loud noises; bright lights; people trying to force eye contact or getting into his personal space; putting anything on his head or in his ears, etc.

Right now, we're working with Ryan's OT to find what best soothes him when he's upset, but we're also focusing on "Just Right Challenges." What this means is finding ways to introduce new textures and social interactions in a way that moves him just a little outside his comfort zone, without agitating him too much. For example, when I want to make eye contact with him, I might find a quiet moment, dim the lights, and play down on his level with a toy he likes, copying his actions. I speak little, and when I do, I use a soft voice. The "challenge" might be me gently putting my hand over his toy, to see if he will look up to question what I'm doing. In terms of feeding, I might hold the spoon near my face to get him to look at me and express his desire (with eye contact, pointing, or grabbing) that he wants that spoonful of food. We also put various foods and utensils on his tray for him to see them and play with them, essentially, getting him used to their presence during feeding time. Like I said before, this is a process that works in tiny increments. That's why everyone keeps saying they are so glad Ryan was identified early.

Ryan's favorite soothing activities are being held close up on my shoulder/chest, with a deep pressure hug, rocking, and humming. These are my strategies when he's most agitated. Generally, removing him from whatever situation is disturbing him quickly settles him. Another go-to comfort for Ryan is TV: he loves it. Of course, it has to be his shows: Treehouse and Disney Jr. shows like "Dora" and "Mickey Mouse Clubhouse" capture his attention instantly, and often bring him from being very agitated to squealing with happiness, in a minute or two.

The next big transition for Ryan is that on September 20, he will be moving to the toddler room at daycare. He'll be going from 6 babies and two teachers to 18 active toddlers and two teachers. The logistics are overwhelming: he can't walk, talk, climb into a chair, climb into a cot, eat toddler foods, drink from a toddler cup, etc. Add to that the extra noise and physical/social contact, and it's a potential nightmare. However, Children First (OT, PT, Resource Consultant)and our daycare are already brainstorming ways to make Ryan's transition better. They found a little cube chair that he likes to sit in for feedings. They are also talking about making a little "quiet area" for Ryan in/near the toddler room, something with soft textures, low light, less noise, and some privacy. Ryan's Children First team will also be visiting him at daycare more frequently during this transition--two times a week, versus two or 3 times a month.

In terms of further assessments, Ryan had another hearing test today which showed normal results. Tomorrow, he is going for an MRI to make sure his brain structures are healthy, basically to rule out any physical anomalies. Also, like I mentioned before, he'll be going for a psychological assessment in the fall/early winter. The more information we get, the more we can piece together the puzzle that is my sweet little Ryan.

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Oh, and let's add to that: Kevin. Kevin is going for psychological assessments at the end of this month to check for autistic tendencies, as well. We're also investigating an SPD diagnosis for Kevin, because he shows some difficulty dealing with loud noises, social situations, and seems to show a need for increased stimulation at some points (like when he rubs his head on the carpet). We're anxious to get Kevin's results ASAP because he starts JK in September, and the school will need to make some accomodations. We already have OT and PT plans set up for him after having a transition-to-school meeting with the school and service providers back in May.

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Should I mention that Andrea clearly has anxiety problems? Everyone says (daycare, school teachers, etc.) how sweet she is, and how smart she is, but . . . The child cries at the drop of a hat, and has some intense anticipatory anxiety (worries about things she expects to happen, but usually don't). Her emotional outburts when she experiences anxiety are over-the-top. We've tried to teach her some breathing techniques, but I think she might need a little more support. (?)

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Oh, yeah, and Ryan had hives for a week around the end of July, and always seems to be rubbing his nose and ears. Some Aerius medicine helped. Still, he has been referred for allergy testing in October. It's a good idea, considering our family history of allergies. However, allergy testing on a child with SPD? Oh, geez.

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One more thing: I just received the call today that we've been registered for the "More Than Words" communication program which starts in mid-September. It's to help improve our communication with Ryan. That will be 8 weeks of Thursday nights learning how to communicate back and forth with our pre-language-and-possibly-autistic child, plus 4 taped sessions of us interacting with Ryan, and then feedback from the experts. We did something similar for Kevin about 2 years ago, and although time-consuming, it was a good program.