Kevin and Ryan Updates

Kevin's Psychological Assessment

Kevin went for his psychological assessment on Wednesday and Thursday morning this week.  (Daddy took him in because he had some vacation days, and I was just starting back to work this week.) On the first day, they did cognitive testing portion with Kevin. The child psychologist came in and introduced herself to Kevin, and explained the procedure to Daddy.  Then, she took Kevin into a separate room, where they sat across from each other at a little table. She asked Kevin questions about pictures, gave him puzzles to work on, tested him on following instructions/language comprehension, etc.  Daddy was in a room next door that had that two-way glass, so he could observe, but Kevin couldn't see him. Our Children First Resource Consultant (RC) sat with Daddy and explained things/took notes. Kevin responded well to the questions and seemed comfortable with the process.

On the second day, they did more assessment of the social/play areas of Kevin's development. Daddy and our RC were in the room, but off to the side, and were not to get involved unless Kevin made a specific request of them.  This time, a student was using a family of dolls to try and engage Kevin in social play, like encouraging him to use the doll to kick a ball back and forth to another doll, etc.  Kevin quickly lost interest in this.  In the variety of toys they provided, he zeroed in on the one car and one space ship available, and only wanted to play with those.  The child psychologist stepped in and tried to engage Kevin using those toys he was interested in, with mixed results.  By about halfway through the appointment, Kevin was telling everyone, "I liked yesterday better," "I don't like this appointment today," and "I want to go home now."

We'll get an official report with the child psychologist's observations and recommendations in about 2-3 weeks.  Daddy said they didn't say too much else, except how surprised they were that Kevin responded so well on the first day, and showed  boredom and irritation on the second day.  They said most kids like the play assessment better, which I suppose would make sense.  But since when have my kids followed other kids' trends?!

Kevin's Sensory Profile Assessment

We finally got the formal reports for the boys' sensory assessments. Here's a summary of Kevin's results.  He does have "sensory differences" in some areas.

• Kevin may miss sensory input needed for participation. He has difficulty organizing input related to his endurance/tone. Therefore, he may have difficulty sitting for long periods of time, remaining alert, and maintaining participation with peers.
• Kevin seeks/obtains sensory input at a level similar to others.
• Kevin is bothered by sensory input much more than others.  He may become so overwhelmed by sensory input that it interferes with participation. He can become either too excited, or too withdrawn, to respond appropriately or complete some tasks. He becomes frustrated or upset easily when his nervous system is not interpreting input in a helpful way.
• Kevin detects sensory input to a degree that is similar to others.

Therefore, Kevin will need classroom modifications to his seating and school supplies (scissors, pencils, etc.) to ensure he does not tire too easily.  He may also need a quiet space or some coping strategies to help him when sensory input becomes overwhelming.  The big message we need to get to his future teachers is that if Kevin appears restless, or is having difficult behavioural responses, it could very likely be due to his sensory differences, and should be handled in a manner appropriate to his needs.

Ryan's Sensory Profile Assessment

Here's a summary of Ryan's report. 

• He has a "particularly low threshold for sensory input," meaning, "it takes a very small amount of sensory stimulation for him to become overwhelmed and he is not able to attend to or understand the important information in the environment." 
•  Ryan's differences in integrating sensory input "are affecting his participation in his daily activities (i.e. not yet feeding self, not yet transitioning to solid foods, avoiding playing with others . . .)." 
• Ryan tries to "gain control of his environment by moving away from uncomfortable stimulation and/or showing distress (crying, turning away)."
• Ryan does not seek enough sensory input to sustain successful participation.
• He may become so overwhelmed by sensory input that it interferes with participation.
• Ryan detects sensory input more than others. He may be so distracted by sensory input from his environment that it interferes with his daily functions.

At this point, we are already aware of these issues, and this just put it into a clinical summary for us.  We are continuing to work with Ryan's Occupational Therapist (OT) to "explore sensory and self-regulation strategies to support his ability to function within his various environments." 

Ryan's 18-Month Check-Up

This week, we also took Ryan to the pediatrician for his 18-month check-up and immunizations.  (Ryan is 19 months old this week, but the pediatrician wanted to do it by corrected age since Ryan was born about 5 weeks early.) Our doctor has been following all the reports from Children First and all the other specialists Ryan has been seeing, so he's very much aware of Ryan's developmental delays and sensory issues. Anyway, here's a summary of information from our visit to the pediatrician:

• Ryan is almost 27 pounds, and 33.5 inches long.  He's a big, healthy boy, in that sense!
• I asked about the sore he's had on his cheek for 8 weeks. I have tried putting polysporin on it, but it comes and goes. The doctor said, "Put Polysporin on it." I told him we already did. He said, "Put some more on, and put a bandage on it." Whatever.
• I asked about Ryan's constant grabbing/scratching of his private areas.  The doctor's response: "Oh, that's normal." Whatever. (It's not normal that he's giving himself a constant rash.)
• The doctor told me Ryan should not be drinking more than 12 ozs. of milk a day because it will make him severely anemic.  I think he saw the look I gave him, because he quickly added, "Of course, with his food-sensory issues, it may take time to adjust this . . ." Um, ya. The only liquid he will tolerate is milk. (I tried water yesterday and he looked like he had sucked a lemon.  He also took about 3 sips of apple juice, and then tossed the bottle across the room.)
• GOOD NEWS: Ryan's MRI results are completely clear. Like it was with Kevin, we don't know what's causing all his developmental delays. However, this time, we do know the sensory issues are negatively affecting his development.

Of course, the big "A" popped up again at the end of the appointment. The doctor asked, "Have you considered an investigation into a diagnosis of Autism for Ryan?" to which I responded, "Yes. He's on the waiting list for a psychological assessment from Children First within the next 6 months or so." The doctor agreed that they usually start testing for autism around age two or later.

***

Despite all the medical concerns, we still have our lighter moments. A few nights ago, Ryan was laughing like crazy at a Pampers commercial that has babies crawling, scooting, and walking to some up-beat classical music. He especially enjoyed the baby at the end.  Since we have the DVR, we were able to rewind and play the commercial over and over, for about 20 minutes straight.  The more we played it, the harder Ryan laughed!

The Toldeo Zoo

Yesterday, we decided to go on a mini road-trip to The Toldeo Zoological Gardens.  We have never been there before, but heard a lot of great things about it.  Plus, it's only about 45 minutes across the U.S. border from us, so it's a reasonable car ride to get there.  Andrea and Kevin were very excited to go.  All three kids did surprisingly well on the car ride, and we only heard, "Are we there yet?" three or four times.  Furthermore, Ryan loves car rides (as long as we keep moving), so the hour-long freeway trip was perfect for him.  He was very vocal, but also very relaxed, during our drive to the zoo. (He slept all the way home. It was past nap-time).

***

Andrea is ready to go to the zoo!

Kevin is ready to go to the zoo . . . ? Not quite.

A friendly Harbor Seal swam close to the glass for us, so we could get a good look, at the Arctic exhibit.

The Polar Bear was sitting in the sun, glancing over his shoulder at us.

Ryan sat up and watched Andrea go on the African carousel.  He and Kevin weren't interested in going on any rides for themselves.

Andrea had Daddy for company on the African carousel. She chose to ride on a baby elephant.

After the carousel, we got in line for the Africa Safari train ride.  Ryan was getting tired. It was close to nap time, so he almost fell asleep on Daddy while we were waiting!

The little boys were not too excited about the train ride. Kevin got scared and cried (yes, there are actual tears in this photo!), so we had to coax him on the train. It's odd because he went on the Thomas train at Greenfield Village back in May, and had a great time.  Oh, well.  Ryan was just sleepy.

Andrea and I shared a seat behind the boys. I tried to take a picture of the two of us, but ended up with Andrea's big grin, a bit of my arm, and a bit of my eyebrow!

The first animals we saw on the safari train were the African Wild Dogs.  They were resting in the shade.  These are called "painted" wild dogs because of their spotted coats.

This Impala was right next to the fence in the next section of the safari.  It didn't seem at all bothered by the train or the visitors.

Next we saw a Zebra and two Wildebeest grazing by each other.

The Zebra and Wildebeest were joined by a Giraffe, in the shade.

It was interesting to see how well these different grazers got along together.

Two Impala were hiding nearby in the shade, while the Giraffe got a bit closer to us.

As we came around the other side of the Africa area, we saw another Giraffe, two East African Crowned Cranes, and an Ostrich.

As we came around the bend, Andrea also made an amusing, but not surprising, observation.  It was a warm day, in an open-air exhibit with live animals, so the scent was a bit pungent at some points.  Andrea was sitting quietly, when she suddenly made a comment about how it smelled kind of gross, due to the animal droppings!

(However, most of the ride was pleasant. I guess we just got downwind of the poop smell at that point!)

They also had some interesting bushes and plants beside the train tracks. Andrea thought this flower was especially pretty.

Andrea's looking at a huge termite mound (ew!) and the Ostrich is walking near it.

Kevin started to relax and notice the animals about halfway though the train ride.  I believe he was asking about the termite mound when I snapped this photo.

Ryan likes most gentle-motion rides, like in the stroller, in the car, and on this safari train. He didn't really notice the animals, but he was relaxed and content.  He almost fell asleep again!

The two Wildebeest and the Ostrich are joined by a big Saddle-Billed Stork.

East African Crowned Cranes are monogamous; they mate for life.  They also have cool hairdos!

***

After the safari train ride, we stopped to have lunch.  There we learned that Andrea and Kevin hate lemonade: apparently it's too sour, even when sweetened (long story, with much childish complaining).  However, the lunch area was interesting because where we sat overlooked the safari area, and two or three griaffes and some of the other animals kept coming up close to the edge of their enclosure, near the pcinic area.  I saw a giraffe and an impala playing together, chasing each other, like they were racing or playing tag!  After lunch, we headed off to see some more animals.

***

The tigers were sleepy, and resting in shady spots.  This Tiger was resting under a tree. (There was a glass viewing area that was supposed to help us see the tigers better, but it was a bit smudgy.)

Daddy, Kevin, and Andrea spotted a Tiger asleep in the rock cave.

Here's a close-up of the Tiger who was napping in the cave.

These are African Penguins.  The one poked his head out of the water to say hi!  Andrea, Daddy, and Kevin got to go down some stairs to the glass viewing area, so they could see an underwater view of the penguins swimming by them.

Here's some more of the African Penguin habitat. There didn't seem to be too many penguins out. (They were probably hiding in a cooler area.)

Meanwhile, Ryan and I found our own shady spot, with a cute sculpture of a momma tiger and her cubs.

Andrea sat on the momma tiger's tail to pose.  It looks like the cub is about to pounce on her! Watch out, Andrea!

***

Unfortunately, the kids lost interest about halfway through the zoo exhibits.  It was hot on that day, too.  We were only there for about 3 hours (including a long lunch break).  Therefore, we missed out on a lot of interesting things, like the apes, reptile house, butterfly conservatory, etc.  However, it's a zoo that's not too far away and seems to have a lot to offer, so we plan to try again in a year or two.

Typical Ryan

With Ryan, like I've said before, small advances are big things to celebrate.  For instance, today I was eating some strawberry banana yogurt, and decided to try and give him some.  It was time for his breakfast, and Daddy mentioned he had accepted a couple bites of yogurt a few days ago.  Admittedly, I made it easy for Ryan: I fed him while he sat on the floor watching one of his favourite TV shows. Still, he ate almost half a cup of yogurt!  I even fed him a few bites with strawberry bits in it.  While he did make faces, he didn't spit it out or fuss, so that's a big accomplishment for him.  Then, at lunch time, I made an oatmeal-banana puree combo he particularly liked, and I believe he asked for more using the word sound "mow" at least twice.  However, that's not typical Ryan. Mealtimes are usually much more stressful. Today was a good day.

***

I'd also like to record some information about typical Ryan behaviours/mannerisms (not sure what the proper term is). 

• Like I've said before, he's not comfortable with eye contact. (However, I've noticed he will look in the direction of my camera, but only because he's interested in the camera.) 
• He rarely responds or turns when I call his name.
• When he's tired or upset, or even at random times, he repeatedly shakes his head "no."  I remember he used to roll his head side to side as an infant, when he was trying to fall asleep. Could the two motions be related? 
• When anything excites him, his arms and hands start flapping, and sometimes he kicks his legs up in the air and seems to be balancing on his bum! 
• He's  always picking at/sticking a finger in his ears. (He's been tested for fluid/hearing, but it's all clear.)
• He scratches at his head when tired/upset.
• He grabs/scratches his groin area frequently.
• His two favourite spots are right in front of the TV/entertainment unit, or sitting on the base of our fan. (We think he enjoys the gentle vibrations of the fan.)

Some new and unusual additions include:

• He licks his hands, some toys, and sometimes our couch.
• He hits at his legs (not hard, but a rapid, patting/swatting motion).
• He lifts his leg up and uses his toe to rub the top of his head (seriously, he is flexible!).
• He crawls and drags/rubs his head on the floor for short periods. [Kevin did and still does this.]

I captured a good video tonight of Ryan just doing his thing.  In the video, you see a lot of his typical behaviours.  The video is a bit long (about 8 minutes?), but I took it to keep track of what he's doing, and also to have something to show to our health-care team.

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.

***

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.

***

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. (?)

***

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.

***

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.