She doesn’t know what… but she knows that something interesting is going on.
School may have started up again the third week of August (3 hours in the afternoon 5 days a week), with private OT and speech therapy three mornings a week and a new dietary regimen to follow, but we have still found time to have lots of fun already this month!
We went to the Colorado State Fair down in Pueblo over Labor Day weekend. We wandered around eating barbecue, ribbon fries and funnel cakes, looking at everything there was to see. This year Nolan was actually brave enough to touch some of the animals! He liked the bunnies a lot, and here he is petting one of the Nubian goats.
We took Nolan on his very first ride at the fair, a bear-shaped tilt-a-whirl that didn’t tilt very much and was surprisingly hard to get whirling. He also explored a fountain for the first time, although he ended up getting trapped inside a circle of jets that stayed up for a long time; we ended up having to rescue a very wet and upset little guy, but we were so proud that he tried it!
Nolan’s favorite part of our trip to the fair was when we let him out of the stroller to run around in the shade by the horse stables. He ran the whole length of the stables, and stopped at the end, right under a horse’s head; the horse leaned down to sniff his hair, and Nolan reached right up and touched the big soft nose hovering over his head.
But the best part about the stables was not the horses that watched his every move, but the dust under his feet! He loved the way he could shuffle his feet to kick up dust, and did it so enthusiastically that he was filthy by the time we left.
The next weekend we finally had an opportunity to take Nolan over to the beach at Chatfield Reservoir for some outdoor water exploration. He made a beeline for the water as soon as it came into view, and we hardly had time to get his shoes off before he was in the water. (We did end up leaving his socks on, to protect tender toes from the rough gravel beach; Nolan won’t wear his water shoes!)
It took me a long time to get used to the water temperature, but Nolan charged in up to his chest in no time flat, and alternated between insisting on holding our hands and wanted to walk unassisted in the waves. He splashed his hands, kicked his feet, and particularly got a kick out of being swung forward and backward in the water.
Eventually, Nolan’s energy started to flag and I had had about enough of the rocks in my Crocs, so we bundled up in towels and spent half an hour or more sitting on the beach, enjoying the sunshine and listening to the lapping water. Hard to believe after a day like this that the autumn frost date is creeping up on us!
Nolan’s first visit to a swimming pool, courtesy of our hotel in Napoleon, OH. He went right in the cold water like a champ, and had a blast walking up and down the steps at the shallow end of the pool over and over, emphasizing his delight at the combination of water and stairs by signing “more” with my hands every time he climbed out, and then splashing right back in. He only put his face in the water once or twice, but spent a lot of time trying to lick the surface without getting the rest of his head wet. We may have a water baby on our hands yet!
We were able to sneak off to Ohio for a few days of family visits at the beginning of the month. It was Nolan’s first airplane, and he did great on the flights, aside from wanting to push his feet on the seat back in front of him (I did a lot of joint compressions!).
We started out with a visit to my dad’s parents at their care facility in Reynoldsburg. Nolan was very active, jumping on their bed and running laps around the facility, but they seemed to enjoy the activity as well as our company. I hadn’t seen them in probably 7 years, long overdue!
On the 4th of July, we went to a family cookout at my cousin Harry’s house. It was a lot of fun to see everyone and watch the kids running around playing with water toys. Turns out there were four 3-year old boys, all obscurely related—the two boys to the left of Nolan in the photo are both his second cousins, and the other boy is their cousin (related to me through my cousin’s marriage).
Nolan mostly avoided the water toys because he didn’t want to put his bare feet in the grass (that is why he was clinging to me in the second-cousin photo), but he did walk in the puddle at the bottom of the slip-n-slide a little bit, which was good progress. Mostly he snacked on chips and cheese and cookies, and climbed up and down the porch stairs.
After two days of visits in the Columbus area, we drove over to Liberty Center to see my mom’s parents. Last time I was in that house, my great-grandparents were living there! I think it had been even longer since I had seen Grandma and Grandpa Westhoven, and it was great to see them still living at home, driving around town, and in good spirits.
My grandpa spent our whole visit trying to get Nolan’s attention, which was pretty funny to watch. Eventually he learned the trick—bribing him with slices of cheese!
A photo of my parents on the verge of their 40th anniversary, standing on the spot where my dad proposed. Who knew railroad tracks could be romantic?
Our only travel snafu happened right at the end, when we were pulling into DIA and it started raining. There was such a strong thunderstorm over the airport that they put a ground stop on all activity, and we ended up waiting at baggage claim for over two hours for our luggage to be unloaded from the plane, an hour of which Nolan spent sleeping on my back in the Ergo carrier. At least one of us was comfortable!
Just a fun little photo sequence today! Many of you know that Nolan has been very uncooperative about bathing since the beginning of the year. We now accomplish the task with me climbing in the tub clothed, holding Nolan, and my mom on hand to scrub him down while he clings to me for dear life. Any other set-up results in much stress and screaming bloody murder, and I end up just as wet anyway because he scales me like a tree. You’d think the child was part-cat.
As it turns out, he might be part-bird instead! There are several bird baths in my parents’ back yard, and Nolan keeps splashing his fingers in the water. Today he tried to push all the water out of the basin with his fingers and/or water the lilies-of-the-valley underneath. He ended up soaked from the chest down, and didn’t appear to mind one little bit. Before we had the camera outside, he even stuck his forehead in the water several times! So maybe bathtime won’t be traumatic forever.
Update 6/25/11: The bath-time saga, which started on January 5th of this year, has finally come to a resounding conclusion. Since writing this post, Nolan has started enjoying his bath so much that he tries to climb in the tub even before we can get his clothes off, no adult company required. He splashes and kicks like crazy, dousing the entire bathroom in water; he chases bubbles and tries to stick his chin into them and sucks water off his fingers; he spins around and sometimes even slides onto his belly for the fun of it. He still seems just a tad anxious when I have to wet his hair to wash it, but no crying in sight. When the water finally got cold, he climbed out of the tub on his own with the help of a step-stool and right into the towel I had waiting for him—and then proceeded to be so energized that he jumped on his bed, my bed, and my mom’s bed, and wanted me to help him do flips!
We have been very busy with all kinds of stuff this month, and have not had much time to update the blog for a while, but I’ll try to do a little catching up here.
The most important update is of course Nolan’s preschool. He has worked his way up to attending school five days per week, 2 hours per day, and we decided to wait until fall to move him up to 2.75 hours per day, which is a full schedule. Nolan loves going to this school so much better than his previous one that he always eats breakfast cheerfully and goes right over to the laundry room to get his shoes and jacket, and go out to the car; he also holds my hand and walks down the sidewalk to the blue door, walking right into his classroom as soon as the door opens, and he doesn’t even fuss when I leave anymore! He gets speech therapy 3 times a week at school and OT once, plus lots of one-on-one attention from his wonderful special ed teacher and aides. Last week when I came to get him, he was painting at an easel without needing any assistance one day, and another day he was sitting at a table with the other kids in his class like it was the most ordinary thing in the world. My previous post showed some of the activities he participated in for last Monday’s field day. So as you can imagine, we are thrilled with his progress, and very sorry to see not only the end of the school year coming up at the end of May, but also his teacher’s retirement.
Although school is coming to a close, we were fortunate that Nolan’s placement in the intensive needs classroom gave him an increased qualification for summer school, or Extended School Year (ESY), so he will be back in a classroom setting after just a week off, and attending 4 days per week for 2 hours a day. The program is at a preschool in Lakewood, about 25 minutes away, and will mean new teachers, classmates, and a new classroom, but we think it is important for him to have as much intervention as possible.
Speaking of interventions, we have made progress on that front as well. We were incredibly fortunate in that Nolan qualified for Colorado Medicaid, which will go a long way toward our therapy bills. Three weeks ago, we were able to get Nolan started with occupational therapy once a week, with a possibility of increasing to twice a week and maybe even an additional group therapy session. He is on the waiting list for speech therapy at the same Children’s Hospital satellite branch, but we aren’t sure when his name will come up for that. In the meantime, we have also contacted the Rocky Mountain Autism Center, which focuses on speech and communication largely using the SCERTS model, and will be having an initial meeting there next week to try and get that crucial speech piece in place.
Nolan has already been benefitting from the speech therapy he receives at preschool. He has started saying “bye” and waving spontaneously and appropriately again, and he learned how to say “eat,” which I know they were working on at school. In addition, he has been making a lot of partial sounds for words, like “tah” for toast or “ump” for jump, and showing me very emphatically what he wants by taking both my hands and dragging me around the house. He asks to go out of the house all of the time now by bringing me his shoes and trying to put them on himself (and he even puts them away without prompting when we get home!)
We have had some struggles with Nolan’s sleep pattern in recent weeks, however. It seems that every single day he either wants to stay up until midnight (or later) or else goes to bed on time and wakes up in the wee hours of the morning (it was 3:30am two days ago). I think he is averaging 14 hours awake per day, which is a lot for a 3-year old! Part of the problem is that he knows how to climb out of his bed, and he has spent several nights sleeping on the floor next to the door, even though we have a little tent set up on the floor with an air mattress and blankies. He does know how to climb back into bed though; yesterday I went to check on him when the house got too quiet, and found him in his room, jumping on the bed.
Finally, with his therapy largely being covered by Medicaid, we have begun looking into some alternative interventions for Nolan. We have an appointment scheduled with a naturopath in Boulder who competed the Defeat Autism Now training program, and we are looking forward to tailoring a dietary program for Nolan’s needs. In the meantime, we have started giving him a daily supplement of emulsified fermented cod liver oil (the mint-flavored variety from Green Pasture), and purchased cow shares at Windsor Dairy to have weekly access to fresh raw milk, pastured eggs and grassfed beef. My dad and I have also been working hard in our plots in the backyard and local community garden so that we will have homegrown vegetables this year; the weather has not really been cooperating in May, what with the hail and unseasonably cool temperatures, but so far most of our little sprouts are hanging in there.
As you can imagine, all of these ventures (and the many educational and therapeutic toys we have been accumulating at home) add up in the checkbook. My parents have generously taken on much of the financial burden, but I have started my own little business at home to help offset expenses. Called Scribbles by Sparks, I create whimsical monoprint cards and bookmarks from Nolan’s own scribbles at the easel, each one unique as a fingerprint. Custom orders are available through my website, Facebook, or email at firstname.lastname@example.org, and I also offer cards for sale on Etsy and a few brick-and-mortar locations around Denver. Thanks so much to everyone who has invested in Nolan’s future by purchasing Scribbles by Sparks products—in just the last week, I sold enough cards to cover two months of raw milk! If the business takes off as we hope, I would like to start donating a percentage of the proceeds to a pertinent charity, such as Autism Speaks or the Autism Society of Colorado.
So much has been going on that I have had no time to update the blog! Nolan and I have moved temporarily to Colorado in hopes of seeking out better special needs services than were available to us in Oregon. We spent three days in an RV with my parents and their two cats, during which Nolan was amazingly congenial about being strapped into the car seat, and have spent the past few weeks getting settled in here in Littleton.
In addition to unpacking, shopping for items that needed to be replaced, getting my parents a DVR for their satellite to record Sesame Street, getting the garden started, and entertaining the company of two of my cousins, we have spent loads of time on the phone, seeking out therapies and autism services for Nolan.
Most notably, we are in the process of getting Nolan enrolled in preschool. He was lucky enough to qualify for the state’s most intensive preschool program, five days a week, three hours a day, with a full-time special ed teacher, 3 aides, and visits from speech and occupational therapists several times a week, with only seven kids in the classroom. The icing on top is that it is located only a mile away from my parents’ house.
Nolan has also had a bit of a cold for the past week, so he spent a few days clinging to Mama every chance he got, but although he still has a bit of a runny nose and cough, he is clearly feeling much more like himself again, running every which way, playing with toys, and paging through his favorite book, Brown Bear Brown Bear What Do You See?. There is plenty of fun stuff to explore at Grammy and Grandpa’s house!
Although I haven’t written much on this blog in some time, we have been quite busy and have some important news to share with you all about Nolan.
At his 30-month check-up, Nolan’s pediatrician recommended developmental evaluations with an occupational therapist and speech pathologist, as well as a visit to the Child Development and Rehabilitation Center (CDRC) at Doernbecher Children’s Hospital. The former two occurred in November, and resulted in Nolan starting regular occupational therapy sessions in December. We also initiated contact with Willamette ESD to find out if Nolan qualified for Early Intervention services; an evaluation on January 6 confirmed his eligibility in virtually all areas except gross motor, and we have started meeting our in-home representative a couple times a month.
On January 18, we were finally able to get an appointment for Nolan to visit the CDRC Autism Clinic. After several hours of observation and interviews with a team of specialists, Nolan was diagnosed with global developmental delays and Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS), a condition on the autism spectrum. Although we had been led to expect a result along these lines, you can imagine that we were nevertheless devastated by the news. The positive bit is that everyone thought Nolan was sweet as pie and very cooperative, a quick study, and we have been reassured that they think he will respond very favorably toward intervention, as much as we can throw at him particularly in the next three years.
Since then, I have been up to my eyeballs in forms, phone calls, and appointments for Nolan. Half the challenge seems to be non-availability of services in Salem; even available programs are already full up, for the most part, and since I don’t drive, our access to town during the day is even further limited. Nolan was enrolled in preschool this fall, but it turned out not to be a good fit for his needs, and he won’t be able to get into a state-funded preschool until fall. The other half of the problem is the financial piece—how to pay for Nolan’s interventions. We qualified for a little assistance from the hospital, none from the feds, and frankly our health insurance seems like way more confusion and expense than assistance, but that is how it goes.
At the moment, I’m starting to feel like all the doors are slamming in our faces, but I’ll keep at it, since Nolan really needs the advocacy now. Fortunately, my mother was visiting us the week of the big eval, and she helped me get Nolan set up with some therapeutic toys, all of which he loves, and that, coupled with the ESD and OT help, have given me a better handle on how to play with Nolan in ways that will benefit his learning style the most.