There’s a great organization called Autism Speaks, founded by the former president of NBC when his grandson was diagnosed with autism. It’s the nation’s largest autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families. When your kid is first diagnosed with autism, it’s quite overwhelming. Acronyms are being flung at you left, right, and center. Therapy plans have to be established for your child, and all this while you’re still in shock about the diagnosis and have to explain it to your family and friends. Autism Speaks has taken the guesswork out of a lot of this by publishing The First 100 Days Kit, a free download to assist families during the first 100 days after diagnosis, which is a crucial time in establishing the help and routine needed for a successful intervention. In addition to answering “What is autism?” and providing local and national resources, it gives you a week by week checklist of what you should be accomplishing. It’s awesome. And, if you want a hard copy, thanks to a grant from FedEx, a printed version will be waiting for you, printed and bound, at your local FedEx copy shop.
We are now past our first 100 days. We have established an IFSP, assembled a team of crackerjack therapists, immersed ourselves into the world of autism therapy, and have watched our son blossom and grow. So, here’s a look back at what we’ve accomplished and what’s coming up for our sweet boy.
Mastery
My son has literally mastered two skills. The first is pointing. Nate uses pointing to make a choice and to identify things. In most activities, he’s given two choices (i.e. two puzzle pieces) and he has to point to the one he wants. His consistency in pointing (literally, the act of pointing) has given him a high score that, when graphed, proves he’s mastered the skill! Since mastery, we’re seeing Nate adapt this skill to point to what he wants (not just make a choice when forced) and point to notice things. Yesterday, at school with Miss Lisa, he pointed to the clouds and looked at her to see if she saw them, too — a first for our boy! Nate has also mastered ringing the remote doorbells that Chad placed on Nate’s baby gates. Our former BCBA Colleen set up this awesome program that trained Nate to ring the doorbell when he wants Mom and Dad’s attention, which is much better than banging his head against the door in frustration. He’s such a pro at the doorbell that he often stands there to pick the right song (it has twelve little ditties) before actually pushing the bell.
Words
We have words, people! WORDS! Nate’s vocabulary is small and inconsistent but he has said some words a few times. Most frequently, he has said “all done,” a phrase we’ve been working on since the first week of therapy. Sometimes he does it with his version of the sign; sometimes he just says it. He’s played that card a few times in therapy and is slowly making the connection that the phrase “all done” is connected to making an activity end, especially one that he doesn’t particularly like. He has also said “Dad” in an appropriate reference to his father. He tends to say it when Chad comes home from work or in a conversational tone to his pops.
Most surprisingly, Nate said a sentence—a full blown statement, clear as a bell, and proved to me why therapy has a specific structure. When we work on PECS, Nate’s therapists tell Nate what he is saying when he hands over a picture card. For example, if we’re playing with blocks, and Nate requests a block with his PECS card, his therapist says, “I want the red block.” Then Nate gets the block. Well, we’ve been doing this for weeks on end and I didn’t really understand why his therapists repeat the same darn phrase back to him every time he forks over a card. One morning, a few weeks ago, we were engaged in Nate’s favorite activity: bubbles. We were using PECS, but Nate’s not really into the PECS now that he’s figured out how to point. So he went into a corner of the room and sulked about having to carry the gosh darn PECS card all the way across the floor to Miss Alison, who was patiently waiting for instruction. Nate starred her down. Miss Alison starred Nate down. Finally, he sighed and, out of nowhere, Nate said, “I want bubbles.” Guess who got bubbles? He said it two more times—crystal clear. We threw Nate a parade and I was so happy that his first sentence was witnessed by a therapist who has diligently worked with Nate these past four months.
Now, this does not mean Nate has a repertoire of words. This only means that Nate has said them—and, for most, we can count on one hand the number of times he’s said them. He only said the “bubbles” sentence that one day. “All done” is sticking around, but less so this week. And “Dad” hasn’t been heard in about a week. Regardless, we think it’s awesome to know that some things are kicking around in there and that Nate is working so hard to tell us what they are! Nate’s babbling has also significantly increased, and we think he’s saying words that we aren’t smart enough to understand yet.
Commands
We just added commands to Nate’s program. The commands are “sit down” and “throw away,” both of which are tasks that will be expected of him when he begins school. (Oh, yeah. We’re thinking that far down the road, people.) Nate’s awesome at the “sit down” command. However, it usually takes him a few tries to actually get in the chair. Miss Katy, his OT, says that’s because Nate’s got motor planning issues. Since Nate doesn’t have full awareness of his body, he has difficulty figuring out where his limbs go to get him from point a to point b. He often takes three to four passes to get himself into the chair, but he eventually sits his little tushy down.
Signs
Nate’s got four signs that he consistently uses: “eat,” “jump,” “again,” and “all done.” Unfortunately, he now thinks that it’s socially appropriate to greet his therapists with the sign for “jump,” which is one of his favorite activities. (“Jumping” is being thrown in the air.) Nate is not interested in pleasantries: no “Hi! How are you? Lovely weather we’re having today!” Nope. Let’s just get down to business and jump, people. To his credit, he does greet his therapists with a giant hug first but, after that’s out of the way, his little hands go right to making the “jump” sign. Nate has also inconsistently signed “my turn” and “bubbles.” To become socially appropriate, we are now adding the signs for “hi” and “bye” to his program, in hopes that he will at least say hello when greeting someone prior to asking for (or, well, demanding) something from them.
Skills
Nate is doing great at walking down stairs, assisted by a railing plus the hand of an adult. Sometimes he misses a step, again due to the gross motor planning issues. It’s almost as if Nate can’t gauge the depth of the stair and where his foot is in relationship to it. But he’s getting much better. It used to take him fifteen minutes to get down four stairs. Now, he can do our nine outdoor stairs in under a minute.
Nate’s also learning to eat with a spoon. He showed interest in it at school when working with Miss Marilyn, even grabbing her hand to request more hand-over-hand help as he ate three bowls of cheerios. (And that was a snack….Did I mention Nate likes to eat?) We’ve worked on it more at home but it’s still hit or miss and it’s best practiced right before Nate gets a bath.
New Foods
When we established Nate’s IFP, we set a goal that Nate would try (and only try) three new foods. Because of texture issues, they would likely need to be introduced in OT. We’ve had a delay in OT services (they’ve now begun – holla, Miss Katy!), so we haven’t had a chance to start this type of therapy with Nate yet. Anyhow, around a month ago, I was having breakfast in the living room and left my peanut butter toast unattended. Nate came over and started to meddle with it, only to find his hand covered in warm peanut butter. Rather than freaking out and flinging the butter all over the room, Nate thoughtfully inspected his hand, painted in his palm with his pointer finger, and then carefully licked his finger. He liked what he tasted. He then licked his palm and stole my peanut butter toast. It was on an English muffin, so I counted that as a second new food! Since then, Nate has agreed to not just try but eat fruit leather, plain and cinnamon raisin English muffins, and peanut butter & jelly and cream cheese & jelly sandwiches. (He still has a little problem with the texture of jelly but the taste kind of wins him over.) Natealso took one nibble out of a steamed yellow squash at Easter lunch. Four months ago, it wasn’t possible to get Nate to withstand the texture of a steamed vegetable in his hand.
And then, there’s sweets. There was a birthday party at school, so Nate discovered brownies, even going so far as to request (by physically dragging Miss Suzanne to the table) a second helping. Nate’s Auntie Anne and Uncle Kent introduced him to the wonders of chocolate with the sweetest Easter basket, filled with Lindt chocolate bunnies. (Way to start life out on the good stuff!) And Easter breakfast consisted of six silver dollar chocolate chip pancakes. Nate proceeded to dig the chips out and eat them first. We let Nate try a Peep, but he had difficulty with its texture, and ultimately threw it across the room.
Sensory Issues
Nate has sensory issues. Things feel weird, sound loud, or look bright, and that’s overwhelming. This has caused difficulty in two normal activities: getting a haircut and brushing Nate’s teeth. It turns out that the national chain Snip-Its, a children’s hair salon, has stylists specifically trained to deal with autistic children. They understand that the clippers can send them over the edge, that the comb is too funky, and getting your hair wet with a misting bottle is way too much to handle. We went there and have a new best friend, Miss Jessica. She’s got lots of little clients who happen to be autistic. To date, Nate’s had three haircuts from Miss Jessica. The secret is a lot of bubbles and giving Nate two combs — one for each hand — to pop them with. This distracts Nate from the plastic cape (which he hates), the sensation of the hair comb, and the water bottle. Jessica’s a master at knowing when to back off of Nate, when she can get in that one last snip, and how to praise him for being such a good boy. Only one haircut was incomplete (Nate was “all done” and the hair around one ear hadn’t yet been trimmed) but, all in all, he’s tolerating the task nicely.
And then there’s tooth brushing. Oy. When Miss Katy joined our team as Nate’s occupational therapist, this was at the top of our list. Our pediatrician recommended not even bothering to try to brush Nate’s teeth until he was 18 months — but that time had come and gone and our boy’s breath was getting funky. Miss Katy explained that Nate doesn’t have full awareness of his mouth, his cheeks, his face even. So sticking something in his mouth was way too overwhelming. We tried everything – a plain toothbrush, a Thomas the Tank electric toothbrush. Nothing worked. So finally, I got a newborn toothbrush that slips over the tip of my finger and Nate is allowing me to brush his teeth that way. It is a three person job: Chad holds Nate, Curious George chatters on the tele, and I brush Nate’s teeth. We have managed to get a regular (toddler sized) toothbrush in his mouth for literally two seconds. We threw him a parade for that! Finding the right flavor of toothpaste has been a struggle too but now he’s settled on some berry flavored thing.
Next Steps
Nate’s tolerating therapy, he’s paying attention to activities and his therapists, and he’s thriving in the programs that have been established for him. So now, we increase therapy time. Nate has been receiving 9.5 hours of therapy a week. We’re now increasing that by 3.5 hours, so he’ll be up to 14 hours a week, which we’re really excited about. Well, Nate doesn’t really know about it yet….but we’re excited for him! We can’t wait to see how he continues to grow and surprise us with great things!
nate is great 
So wonderful to hear about Nate’s progress! He’s doing so well! I’m so glad you’re seeing good results with his therapy. :)
This reminds me of a phrase I use in gifted education to explain to parents the acute sensitivity of many children to sensations and perceptions–“they have radar the size of Rhode Island.” Guess I’ll have to change that to ” the size of Connecticut.” Such an intriguing combination of too much and not enough in sensory perception! You’ve patiently explained the developmental steps that most of us take for granted in children. How exciting that he’s already preparing for school. During my years in the classroom, what caused the most difficulty for children dealing with Asperger’s wasn’t the academics, but the “take for granted” things which overwhelmed the child and created social barriers with the rest of the students. Things like lining up at the door to go to recess, with the unintended jostling that occurs–it wouldn’t come up at home, but it could derail that very important 15 minute break for all the students. With the forethought involved in Nate’s therapy, he’ll have strategies in place for that. Excellent!
Barb – In my mind, the most important part of his therapy is the work that his therapists do with him at “school” (daycare) twice a week. He’s gone from shoving kids away because they were in his space to tolerating them doing activities next to him. He has a best friend, Kyle, who has a very sweet demeanor and tends to play with Nate when it’s welcomed and gives him his space when he needs it. It’s really special. He’s learned to eat with other kids, sit down at a table, throw things away at school, and clean up in a new environment. You’re totally right – I could see how lining up could derail an entire day. This early intervention stuff is so great–we’re just engraining in Nate what’s to be expected in the future — now. It’s pretty awesome.