I admit it: I’m a proud father.
But when you have a son who counted to 100 at the age of 2, studied and understood the US highway system at the age of 4, and explained weather patterns to teachers in 2nd grade, you know you have a pretty special kid on your hands.
Every teacher, coach, and adult who knows Ty say the same thing: “He thinks differently – unlike any other child I’ve ever met.”
Recognizing Ty’s gifts early on, Renee and I were tasked with the challenge of keeping him engaged and interested in traditional classroom work and activities. At his Kindergarten teacher’s suggestion, we had him tested for the district’s “Challenge Program.” When we learned he wasn’t accepted in the program at that time due to his test scores, we weren’t too concerned because we thought that it would be good for Ty to attend the local school and build social relationships with other local students. We also realized that he probably just didn’t test well at such a young age.
Unfortunately and precisely because of Ty’s advanced cognitive ability, he struggles to identify with his peers and maintain friendships at school. It’s been heart-breaking hearing him cry and ask why other kids won’t be his friends at his current school over the past 3 years. His teachers have also noted that its sometimes difficult keeping Ty engaged in the classwork as he finishes his work far faster than his classmates and sits isolated the rest of the class time. After discussions with his teacher and school advisors, we decided it was time again to try to get Ty into the Challenge Program for 4th grade.
While Ty has exceptional intellectual abilities, he sometimes struggles in traditional timed, testing environments. This has been an issue throughout his academic career and his teachers have worked with him to overcome his anxiety and provide less stressful environments/situations when possible. However, this option isn’t possible when it comes to testing for the Challenge program.
We were optimistic that his additional experience in testing environments would help him to score high enough in the CogAT 6 test that is required by the Edmonds School District. So we were disappointed when we received a letter from the District at the end of January notifying us that he didn’t qualify for the Challenge Program based on the scores.
The world is full of amazingly gifted and talented people who excel in many areas of cognitive ability – but simply don’t perform well in structured testing environments. Ty is one of these individuals.
As the National Association for Gifted Children points out, “Tests are common assessment tools for identification, but should not serve as the sole source of identification…An identification strategy that includes multiple assessments—both objective and subjective—is the best way to ensure no gifted learner is overlooked.” The Association advises that when it comes to identifying gifted children, “Because no two gifted children are alike is important to collect information on both the child’s performance and potential through a combination of objective (quantifiably measured) and subjective (personally observed) identification instruments in order to identify gifted and talented students.”
When we told Ty’s teacher and others at his school that he wasn’t accepted in the Challenge Program, they were stunned and immediately wrote letters of recommendation as part of the appeal process. We quickly learned that the Edmonds School District wasn’t exactly supportive of parents appealing the decision, per their website:
“Appeal Process If your student did not qualify as gifted, you do have an option to appeal the decision. Most families with lower-than-expected CogAT scores do not appeal. If your child is doing well in school and is enjoying and thriving in his/her current experience, you probably should not appeal. If however, you believe your child’s performance is in the very superior range in comparison to peers, you may want to consider making an appeal. In order to support the Appeal process, compelling supportive evidence beyond the CogAT 6 test that was given to your student is needed. To complete the Appeal process, you may submit a few copies of your student’s work (no originals), teacher letters of reference, and current report card that strongly supports the student’s eligibility as a student who is academically gifted. Please choose one additional Cognitive Ability test that will help the MSC review your student’s appeal. The most commonly used additional Cognitive Ability Measure is the WISC IV. A state licensed psychologist must give the test and costs vary according to the test and the psychologist you choose.
• Wechsler Intelligence Scale for Children (WISC IV)
• Wechsler Preschool and Primary Scale of Intelligence (WPPSI)
• Stanford Binet Cognitive Assessment V
• Woodcock Johnson Cognitive Assessment Scales III
We decided to appeal the decision and learned that the cost of private testing was upwards of $500, depending on the professional used for the testing. Now, we already know that Ty doesn’t test well but this in and of itself doesn’t mean he’s not gifted. Because of the high cost of testing coupled with the fact that such private psychologists had waiting lists for such testing, we were not able to provide additional private testing results as part of our appeal.
While I was hopeful that Ty would be accepted into the program after his initial testing, I was highly confident that he would be accepted based on our appeal. We provided compelling evidence of Ty’s exceptional abilities despite structured test scores along with exemplary letters of recommendation from faculty members of his school. Surely the committee would understand that there are exceptional and gifted children who may not test well but should be part of the program – especially if every teacher that student has ever had considers him to be gifted.
So it goes without saying that we were crushed when we received another letter from the District rejecting Ty and our appeal from the gifted program. The primary reason? “The Committee looked at all the appeal and testing information, work samples, and exemplary letters from teachers; but they did not have any additional cognitive tests to compare with the CogAT scores. In Challenge, students are expected to identify and solve complex programs, explore concepts in greater depth and complexity and be able to work at a much higher level than students in the regular program.”
So in other words, the Committee doesn’t care what Ty’s teachers think. Or about his work samples or report cards. The only criteria they are using is test scores. We are saddened that families who cannot afford private testing are not allowed into the challenge program. Paying out of pocket for additional testing for the purpose of appeal puts an advantage on wealthy families and unfairly punishes those who cannot afford such private sessions. In our case, we priced out the private testing opportunities to find they are quite expensive and we ran out of time to find alternative means.
We were very explicit in our appeal letter that Ty just doesn’t test well in timed, structured settings, but that given additional opportunities to prove his abilities, he would outperform expectations.
While the most recent letter said that the Committee’s decision is final, we’re not settling for defeat yet because we know how important this is for Ty’s education and development. We’re currently exploring legal and other options, including discussions with the Washington Office of Superintendent of Public Instruction and the Washington State Governor’s Office of the Education Ombuds. The process is broken and it needs to be fixed so that Ty and other deserving and neglected students are not unfairly excluded.
Yesterday as we were driving home from a fun Easter weekend spent in Portland, I came across some sad news in my Twitter feed. Lon Simmons, who was a broadcaster for the San Francisco Giants during the 1960s, 70s and 80s (and later the voice of the 49ers and Oakland A’s as well) passed away at the age of 91.
I’m part of the last generation of sports fans that had to follow their favorite teams primarily through radio broadcasts and daily box scores and articles as kids. There was no ESPN, Fox Sports or MLB network. For baseball fans like me, our connection came through transistor radios and Saturday games-of-the-week on NBC. And as a young Giants fans, I listened to countless games – many of them bad given the Giants performance in the 70s – with Lon Simmons in my ear.
When I was in 7th grade, I missed nearly a quarter of school in the Spring of 1978 with various illnesses, mostly allergy and asthma-related. I was confined indoors in our house, which was unbearable for a normally energetic 12 year old. But luckily for me, the Giants had gotten off to an uncharacteristically strong start that season and were actually competing with the Dodgers for first place in the NL West. Listening to the Giants games was the highlight of each day and I created my own calendar of upcoming games, so that I would have something to look forward to between home tutors and doctor appointments. The Giants were energized by a young power-hitting right fielder, Jack Clark (who quickly became my favorite player). And me and my friends quickly learned how to impersonate Lon’s famous home run calls, “It’s hit deep to left field…way back, way back, TELL IT GOODBYE! A home run!!”
As far as I was concerned, Lon Simmons was the greatest broadcaster on the planet. And later in life I (and millions of others) had the opportunity to vote online to help elect Lon to the Baseball Hall of Fame. He made it in 2001.
I met Lon once, before the famous 1982 49ers-Cowboys NFC Championship game. A friend and I had decided to go to the game and buy tickets from scalpers on-site. We had no idea how long it would take us to find tickets given our minimal $30 budgets so we decided to leave at 9 am for the afternoon game. As luck would have it, we immediately found a broker who sold us the tickets and we soon found ourselves with hours to kill before kick off. We decided to roam around Candlestick Park and somehow found ourselves on the mezzanine level, where the broadcast booths and suites were located. We recognized Lon exiting an elevator and made our way up to say hello. He was much taller than I expected – a reflection of the former pitching prospect he once was – and was very gracious. We were too nervous (and he was too busy) for much of an exchange but we told him how much we loved him and he thanked us.
It was both touching and interesting to read the many tributes for Lon that flowed on Twitter and social media after new broke about his death. It hit Giants fans and media members hard. Many also noted the role that he played in their lives as young sports fans listening to games in the Bay Area. Its not often that people have an opportunity to touch so many others who they never touch but that is truly one of the magical powers of mass media. And I hope that Lon knew how many he touched with his distinctive voice and witty sense of humor.
In honor of Lon, I’m sharing one of his greatest and most famous calls as a 49ers announcer.
Most people don’t think about how difficult it is for a child who has a special needs sibling. This is something I’ve been very aware of though with Ty since Stone was diagnosed with ASD just before the twins turned 3. Even though they are twins, Ty and Stone didn’t play together when they were younger. It’s only been recently that we’ve seen an increase in interaction between them. But in many ways Ty has been almost like an only child, with no sibling to talk to or play with through much of his childhood.
Add to that the pressure and awareness that comes from having a Special Needs sibling. Ty was 5 when he first asked us “What is Autism?” He’s told us that at school he’s had to defend Stone when other kids ask Ty why he’s so different. He’s accompanied Stone to countless speech and OT therapy sessions, always patiently waiting with Renee or I in the lobby while Stone goes through his paces. And Ty is always excited the minute Stone emerges through the door.
I think most parents who have multiple kids probably worry about playing favorites or devoting too much time or resources towards one sibling over another. This sensitivity is heightened exponentially when you’re the parent of a special needs child. Given all of the extra needs that are required, it would be very easy for the typical child to feel neglected or misunderstood. This is one reason why it’s important to me to be as involved as possible in Ty’s youth sports. I want to make sure he has time with me that is his own and has nothing to do with Stone or Autism.
Sometime in 2014 I became aware of a program called “SibShop” – provided by the wonderful organization Northwest Special Families (the same group that organizes the Special Santa program we’ve attended the past 5 years). The goal of SibShop is to provide an opportunity for kids who have special needs siblings to get together with other similar kids and learn simply they aren’t alone. Being a special needs sibling is a club nobody volunteers to join, yet it has its own unique and special characteristics that only members can best understand. So I signed Ty up for the shop last Fall and explained the concept to him.
On the day of the event, Ty was understandably nervous and reluctant to attend. He asked a thousand questions about it as we drove to Kirkland after school. The program features teen counselors (who also have special needs siblings) and adults who organize activities for the kids, who range in age from 1st through 6th grade. I signed Ty in and watched him walk apprehensively into the room. I was told I could pick him up in 3 hours – parents aren’t allowed to stay. This is truly the kids time to be with each other.
I found a local sports bar and watched Game 6 of the World Series while tackling some work via WiFi as I waited to pick up Ty. I was curious how it was going and hoping it was a positive experience. When it came time to pick him up I was thrilled to find an extremely excited and happy Ty greeting me. After signing him out I asked him if he liked it and he gave a very enthusiastic YES! He said that it was so much fun – and that he became so relaxed during a yoga session that he almost fell asleep. The event and experience was a resounding success and Ty said he couldn’t wait until the next SibShop (which happened to be last week – and again was a huge success in Ty’s mind).
Heading into the most recent SibShop Renee and I had noticed an increase in complaints from Ty about having a brother like Stone. He talked about how it was hard that Stone wasn’t interested in playing Minecraft or other activities with him. But since last week I’ve noticed a change in Ty’s attitude and interactions with Stone. He’s now trying to facilitate interaction even more on his end – from asking him questions to trying to get him say word or identify objects. I sense that Ty has accepted a new role as Stone’s twin brother and that he understands the situation better (or at least differently).
SibShop is exactly the kind of program that we need more of within the Autism community. Far too many families aren’t aware of (or able to access) these kinds of programs – most of which are created and managed by small organizations that are fighting for every funding dollar they can find. This is why I get annoyed with Autism Speaks. For all of the millions of dollars they raise through their very effective marketing and awareness-building campaigns, the bulk of their money goes to huge salaries for executives and genetic research. Only 4% of funds donated to Autism Speaks are reinvested in services and supports for autistic people and families. Many families impacted by Autism do not support Autism Speaks – if you’re curious why, simply Google “Autism Speaks Controversy” or something similar and you’ll find plenty of examples.
But the point of this post isn’t to vent against Autism Speaks, it’s to applaud Northwest Special Families and other local organizations like Washington Autism Alliance and Advocacy for the work they do for families like ours who are impacted by Autism daily. And SibShop is a terrific example of a program that has directly helped our family (especially Ty).
Today was officially declared (by someone, somewhere) “Autism Awareness Day.” I’m not sure really if, or how, we were supposed to commemorate the day but all of the attention that it – and April as “Autism Awareness Month” now receives has made me wonder what this all might mean through Stone’s unique (and often mischievous) eyes and perspective.
First of all, I feel very fortunate that Stone has such an amazing and supportive community surrounding him. I have heard of and read about horror stories from parents who have been embarrassed, humiliated and shamed by others due to the unconventional behavior of their child in public. And that is just horrible. But I’ve experienced none of this – at the worst I’ve had to answer a few questions from curious kids asking why Stone likes to watch videos on his iPad alone. But no dirty looks or snide comments. Usually what I do notice are smiling nods of approval as today more and more of the public “gets it” and understands that kids on the spectrum act in non-typical fashion.
I know that Stone has a huge supportive fan club – and I tell him this often. Whether its the formal network of teachers, aides and therapists or informal collection of neighbors, hockey families and our own family and friends, I know that Stone has a ton of people cheering him on, watching out for him and hoping for the best in his continued development.
And the good news is, we’re continuing to see strong, steady progress with Stone’s development. Within the past couple of months, he has graduated from only using single words (“dogs” for hot dogs for example) or single phrases as an umbrella statement (“go home” for anytime he wanted to go in the car). He now uses short and appropriate sentences such as “May I go in the car beach please” or “May I have candy please” (a favorite for obvious reasons). It’s exciting to see him beginning to understand more about language and how to use it to help communicate. The progress sometimes seems slow – especially when compared to Ty – but at least there is progress, and for that I’m grateful.
There remains many challenges – as there are raising every child. Sometimes I feel bad for all that Stone has to endure with our efforts trying to help him. He now has ABA therapy 3 days a week for 2 hour each session – after a full day at school. He has 2 hours of speech therapy and additional Occupational Therapy. He takes a cocktail of vitamins and supplements every morning and evening although fortunately he has learned how to swallow pills, so its much easier for all of us to go through this routine now. I still feel bad when he asks to eat something that he can’t have – such as pasta with alfredo sauce. Its just not fair that there is so much food we have to exclude from him yet we’ve seen the results all too often when we’ve ventured off the diet and allowed him the occasional “treat.” Invariably this results in Stone waking up at 2 or 3 am – and either Renee or I have to get up with him. His system just can’t handle it. And we can’t handle many nights with only 3-4 hours sleep.
What I’m most grateful for is the bond and relationship Stone and I have developed. I never knew it was possible to have such a strong connection when communication is limited as it is with Stone. But the bond is there and its as solid as granite. Stone shatters the stereotype that kids on the Autism can’t/don’t show emotion or affection. He’s incredibly expressive – and affectionate. I cherish the mornings we spend together cuddling or wrestling in bed. I sense how much I mean to him – and I believe he knows and understands how much he means to me too.
And Stone has begun to build a stronger relationship with his twin brother Ty too – and this is hugely important. For so long Ty has felt almost like an only child so he’s now thrilled to have any type of interaction with Stone – and its increasing all the time. Renee and I love watching them when one is chasing the other around the house – or tackling/wrestling each other on the bed or couch. They’re acting like “real” brothers and that is very gratifying.
So while it could be easy to be cynical about the publicity that Autism Awareness Day and Month receive, at the end of the day I’m grateful for it all. I have no doubt that the awareness that has developed has helped make Stone’s life and journey just a little easier. And we’ll take any help we can get.
Tonight I officially wrapped up my first season of organized hockey. And what a season it was! The experience far surpassed any and all of my expectations. I’ve been thinking about how best to summarize and blog about my first hockey season and I thought writing a letter to my Strange Brews teammates would be most appropriate, because they helped provide me with an experience that has been a true highlight in my adult life.
Dear Strange Brews:
Like so many of our games this season, tonight’s didn’t end quite the way we wanted it to but the final score in no way diminishes the pride I have in being a member of the Strange Brews team. To a player, you all accepted this middle-aged first-year hockey player with no reservation or judgement and turned the season into a memory I’ll hold forever.
Growing up as a California kid, I never had the opportunity to play hockey – even though the sport fascinated me. But I finally decided to sign up for the HES learn-to-play class for adults last August and decided to take a chance and join the GSHL as a rookie. I’ll never forget when Dean dropped by one of our last HES classes to announce that the Brews were looking for players and were open to first-year players on the Div 8 team. I decided to chat with Dean to learn more about the team afterwards and was encouraged when he told me “we’re only interested in players who aren’t a-holes and don’t mind playing with women.” That sounded perfect to me – so I told him I’d be happy to be part of the team, if the team was willing to take me as a novice. He assured me it was no problem.
I remember walking into the locker room for our first game, and not knowing a soul. And in true rookie fashion, I also happened to forget my shoulder pads for the game. Luckily Dean wasn’t playing so he loaned me his pads, and I ventured onto the ice for my first game, with my only objective being not to make a complete ass out of myself. What I (and you) didn’t realize was that I began my hockey career with cracked ribs. On the final night of HES class during the scrimmage, I fell and landed hard on my arm/stick on my side. Initially I just thought I knocked the wind of out myself and finished the scrimmage. When the ribs remained painful for weeks later, I realized that I might have bruised them – and possibly cracked them. An x-ray in November confirmed that I indeed, had cracked a couple (though they were thankfully healed). This no doubt contributed to my somewhat slow start but it didn’t stop you from encouraging me every game – and looking for opportunities for positive reinforcement and support as I took baby steps as a hockey player. There were many “aha” moments thanks to your coaching – realizing that charging full force at an opponent could force a turnover because, as one teammate put it, “it looks scary having a big dude like you (Kaufer) skating hard at you.”
Never in my wildest dreams did I think I would finish the season with not one, but two goals (and even a couple of assists). I’ll never forget the thrill and joy of my first goal – and how excited and supportive (and probably shocked) everyone was for me. It was a special moment and part of what makes hockey so awesome – its impossible to be successful without help from your teammates.
It has been so great getting to know all of you better and watching the atmosphere of the locker room evolve and change over the season. In the early season we mostly came in, got dressed and went on the ice with only a few words spoken (other than Dean’s encouragement and hockey etiquette reminders). By the end of the season, this had clearly changed The mood before our playoff games was just amazing – everyone laughing, joking and encouraging each other. What a difference 22 games over 7 months makes!
And this is what most people who have never played hockey don’t understand – can’t understand really. The sport forges a bond unlike any I’ve experienced (or expected). As the season evolved my attitude and expectations changed on the ice as I saw and understood how hard and passionate everyone needs to play to be a successful team. Thank you to all the teammates who took me under your wing (you know who you are) who helped encourage, coach and when needed, kick me in the butt me during the season (“skate harder Kaufer!!”). I’ve developed friendships that I know will continue to grow in the future as the team also continues to evolve.
It was truly amazing to see how much we improved and grew as a team throughout the course of the season – even though our W-L record may not have shown it. By the end of the season I know that my goals and expectations as a player had changed from not wanting to embarrass myself (as earlier) to finding a way to contribute to our team and helping us win. And as a team we also changed from not wanting to get our ass kicked every game to believing we actually had the chance to beat any team we played (and we did). It’s exciting to think about how much more we’ll improve as we continue to play together: The future looks bright for the Brews!
So thank you again each and every Strange Brews teammate for an amazing experience.
After my fun initiation into the world of hockey with the Father-Son game following Ty’s hockey team season earlier this year, I decided to dive in and take up the sport myself. So I marched down the Lynnwood Play It Again Sports (which happens to have the best selection of used and new hockey equipment in Seattle) and loaded up on my gear. What color practice jersey did I choose? Green of course. I also spoke with a couple of dads from Ty’s team who told me about the Greater Seattle Hockey League – which has leagues and teams for all skill levels (including novices such as myself). While researching the upcoming Fall/Winter league, they recommended that newcomers first go through a Beginner Learn To Play” clinic. I checked it out and learned: “The HES Adult LTPH Clinic is specifically designed for the first time adult hockey player. No previous skating or playing experience is required. We will address the basics of…skating, stick-handling, passing and shooting…focusing on developing the proper skating techniques needed to play hockey…Balance, Agility and Speed. You will leave this clinic a better more accomplished skater/player. Our clinics operate in a non-competitive advance at your own pace atmosphere.This clinic will also help you understand the game of hockey and how it is played.” Perfect! The only downside? Its held in Sno-King Ice Arena in Renton – quite a trek from Edmonds. But I figured that it would be worth the commute to formally learn the sport. And besides, its only two nights a week for four weeks. Not a huge commitment. Tonight was the first night of the clinic and it coincided with Renee having to be in Africa for her job. So I arranged for our nanny to help watch the boys while I was at the rink. Originally I was just going to have her take care of the guys at the house while I went to the rink solo, but I changed my mind and decided to bring the crew along for fun – and it turned out to be a good call. After pulling into the rink parking lot, I was getting my bag and stick out of the back of the car when I saw another player in the next car with his stick and bag. “It looks like I’m at the right place,” I said. “I hope so – learn to play hockey, right?” he responded – and proceeded to drop his stick and bag. “Damn, already dropping things,” he muttered. I checked in and the instructors asked if I’d skated before. I told them I had. They asked if I had my skates sharpened. I told them I had – I was less worried about the blades than I was having to tie them myself. They gave me some tips and sent me to locker #5, telling me to be on the ice and ready to go by 8 pm. The locker room atmosphere was typical for a bunch of guys who don’t know each other. There was an air of seriousness and no small talk. Everyone was focused on getting dressed and out on the ice in time. I realized as I started putting on my equipment that I had never actually tried any of it on before I bought it – and wondered if that would turn out to be a mistake. Luckily it wasn’t – everything fit fine and soon I was lacing up my skates and heading onto the ice for warmup. After a few minutes of warm up the instructors blew their whistle and called us in. They explained that their focus was going to be on skating fundamentals – because of its importance in hockey. “You can’t really do much in hockey unless you’re a good skater,” they explained. We all nodded. After another warmup period they divided us into 8 lines with 4 skaters to each group and sent us to the end of the rink. It was time for the drills to start. We did a variety of drills – or I should say we ATTEMPTED to do a variety of drills. Some of them proved to be too challenging for many of us (myself included). Skate to the blue line and get down on one knee and then get back up? I wiped out twice trying that move. The real fun began when they had us try to skate on one skate – and then stop using it. Bodies were again flying on the ice. 20 minutes into the practice one player was sprawled on the ice – not moving. The instructors went to check him out and he still didn’t move. After a few minutes they managed to get him up and help him off the ice onto the bench. He was out with an ankle injury. “Lets hope he’s OK,” the coach said and then continued the drills. Suddenly I felt a lot more like a hockey player. Here is the thing about hockey that nobody (other than players) know about the sport: it makes you sweat a TON!! I felt the first drips of perspiration after the first drill and it only got worse from there. 15 minutes into the workout and I felt like I’d been in a sauna, sweat completely dripping down my face. I probably lost 5 pounds in water weight on that ice in the 75 minute clinic. At one point the skater in front of me asked me how I was doing/feeling. “Very humbled” I responded. It’s been a long time since I felt like a true novice in a sport/activity and there was no doubt I’m one in hockey. But luckily the majority of the class was in the same boat. “I agree,” he said. “I decided to take this up because my son started playing 2 years ago. I used to skate a ton but haven’t done much for about 30 years,” he explained. I told him that was the same reason I decided to play too. Overall I feel good about my effort and in spite of the hard work I really enjoyed it. I only took one big spill (the welt and bruise on my arm/elbow is testament to that, in site of the heavy padding) and I’ll definitely be sore in the morning. But I’m excited about this new chapter and look forward to the rest of the clinic – and hockey season is around the corner!
One of the bigger challenges I feel I face as a parent is trying to balance between pushing the twins out of their comfort zones and encouraging independence – while also trying to be supportive and provide an emotional safety net for them. And I know that as they get older, this won’t get any easier.
I thought of this recently when I took the boys out for a run with me. Ty rode his bike while Stone rode his scooter. During the run I alternate between pushing Stone on his scooter and encouraging him to push himself. Truthfully, for much of the run I end up pushing him along and enjoy the experience (and extra workout) simply because I treasure having an activity we can share together. I don’t want to be so hard core that I make the experience too much work for him and then have him start resisting when I suggest going for a run together. But on the other hand, I do want him to get exercise and also not rely on me 100%. So I make sure during flat stretches that Stone uses his legs to push himself and pull his weight for at least a portion of our 4-5 mile loop.
I know that many other parents struggle with similar issues. As our kids get older they become more independent – usually on their own. And suddenly our roles shift from being someone they rely on for everything to someone who needs to encourage and support them as they explore their independence. This is a transition too many parents struggle with unfortunately – even as their kids become teens and then young adults. And I get it. There is something extremely powerful and magical about that level of responsibility and connection with your kids. And lets face it, we live in a world that can be scary and unpredictable. We want to protect our kids.
But I’m trying to take the long term view as much as possible when it comes to the boys. This is one of the key reasons why all of the therapy and extra support we’re providing Stone is so vital and critical in my opinion. I want him to learn the tools to become more independent so that as he transitions into adulthood, he is as prepared as possible and minimally dependent on us or others to succeed and grow in life.
Even though Stone now weighs 85 pounds (and Ty 75 pounds) I still pick them up and hold them – or give them piggy back rides. I joke with both of them that I won’t be able to do either very much longer so I’m going to enjoy every day and moment I’m still able to do so. For me there is still nothing as powerful as holding my son in my arms – and its a feeling I will remember long after they become fully grown teens and adults. So as silly as it seems for me to give Stone a piggy back ride upstairs every night when it’s bedtime, I’m still doing it – for now. He’s still just a boy and I want he and his brother to enjoy as much as possible about being a child. I feel there is far too much pressure and emphasis in society to force kids to grow up too quickly in many ways.
So where does the pushing come into play? I try to do it in little ways. When we’re swimming, I back up while Stone is swimming to make him work harder and swim better (instead of just letting him hang on me all the time in the pool). When we’re hanging out together I make him repeat his words so that he works on his enunciation. When he’s using his iPad, I turn off his videos and make him try new apps with me – or practice flash card words. When I list these out, I realize that I probably need to be pushing him even more than I am now. I know this is how he’ll grow.
With Ty its a different kind of challenge because he’s already naturally ambitious, curious and competitive. He wants to do better in nearly every activity he attempts – and gets extremely frustrated if he falls short of his expectations. He’s also a major control freak, so we’re working with him constantly to try to be more flexible with his expectations of others and activities and to try to go with the flow more in life. This will be a constant struggle, I know.
My ultimate goal for both boys is that I want them each to have the confidence and desire to tackle new endeavors on their own as they progress through life. And I know that one of the best ways to make this happen is to provide them with emotional support now as they struggle through failures along with their successes. As I said earlier, its certainly not always easy – especially when you see your child struggling in certain areas. But I also know that those who become strongest as adults are often those who learned how to conquer major obstacles while growing up. And I hope that I’m also helping my sons grow that strength to succeed.
This is the third year we’ve had to plan for summer activities for Ty and Stone between school years. The past two years we’ve enrolled Ty in a summer-long camp that is managed by the City of Edmonds and he’s really enjoyed it. They do a mixture of activities ranging from explorations along the waterfront to swim dates at the local Yost pool. Stone has been part of special Summer therapy programs put on by local Autism service providers.
This year we decided to mix things up a bit by enrolling both in new camps and activities. It actually started during Ty’s hockey season, when some of the other parents were talking about a weeklong hockey camp during the summer. I checked it out online and thought it would be a good opportunity for Ty to immerse himself in hockey for a week during the summer and build relationships with some of his teammates and other hockey players.
I also wanted to get Stone involved in a camp called Outdoors for All. This organization works with special needs kids and arranges an amazing array of activities each week through out the summer – everything from hiking to kayaking. Last year I attempted to sign Stone up for the camp but was too late – each week was already sold out by May. So this year I was determined to make sure I didn’t miss the boat and got Stone signed up as soon as registration opened.
In addition to the hockey camp, I signed Ty up for four weeks of the Edmonds camp (he said he liked it and wanted to continue going), two weeks in a new water sports beach camp (also run by Edmonds), one week of flag football and another week in the Wonka Chocolate Factory camp run by the city of Shoreline.
Needless to say, there is a lot of activity and lots of coordination involved with arranging transportation between the two since they are involved in different camps each week.
Stone’s camp meets at Magnuson Park and he rides a bus/van provided by Outdoors for All from a Seattle park and ride under I-5. We make we have him in the parking lot and ready by 8:45 or so. The OFA camp counselors and leaders have been fantastic in every way possible. On Stone’s first day of camp, Renee and I ended up driving him directly to the camp because there was a bit of miscommunication about where we were supposed to meet the bus. It worked out as it gave us an opportunity to see the camp and meet the counselors in person. Renee was especially worried about the experience as this was the first time Stone would be riding a van without one of us and participating in a camp (instead of being in some sort of therapy activity). But it was clear that this is an organization that is very well-versed and trained in dealing with special needs kids like Stone. When we received an email later that day from the camp leader with a quick update letting us know that Stone was smiling, laughing and having fun on their hike that day, we knew he was in good hands.
And for the first two weeks of Stone’s camp, everything went smoothly. We honed our process of getting his lunches, clothes and necessary items ready and coordinated his arrival/pick up with our baby sitter. Stone was having a great time in camp and I was patting myself on the back for finding and initiating this match.
But on the third week things changed. Early that week we noticed that Stone wasn’t quite himself in the evenings. He seemed especially tired and lethargic and his eyes were a bit bloodshot. He also was a little crankier than normal but we just attributed all of it to his very busy daily schedules. We figured he was just pooped and having an off week. On Thursday though, I received a call at work from the camp leader. She told me that Stone was also having a rough week at camp. Counselors reported that he wasn’t taking direction or listening as well as he had previously – and was also frequently running away from the group and had to be chased down. In one case he ran into the parking lot – oblivious to traffic and cars (which unfortunately is true of many kids on the spectrum). She told me that this was obviously a safety issue and concern, as they have one counselor watching 2-3 kids (which is an awesome ratio by the way) and they can’t afford to leave other kids while chasing down one who runs away. She said that unfortunately if this behavior continued, we would have to send a caregiver to accompany. Stone.
I was initially crestfallen. First, I was disappointed and confused that Stone’s behavior changed so much in such a short period of time. But then we remembered that Renee had fought off an off-season head cold the weekend before. It was very possible that Stone picked up the bug and wasn’t feeling well. The OFA counselor also noted that other campers had gone home sick earlier in the week. So it was entirely possible (and probably even likely) that his behavior was caused by not feeling well – and not wanting to do things. We collectively agreed to keep Stone home from camp that Friday and to send him in as usual the following Friday and hope for a return to his old camp behavior.
As for Ty, its been a bit of a roller coaster experience with camps to date. The first two weeks were Edmonds summer camp, and I figured that this would be the easiest stretch for him, given his familiarity with the program and routine from previous summers. But alas, it wasn’t to be. We received reports from Ty that he was getting into trouble at the camp for being disruptive. He was hitting some other kids and destroying their sand castles on the beach. When we pressed him why he was acting this way, he said he was upset and frustrated that other kids weren’t playing with him or including him in their activities. We told him that we understood his frustration but reinforced that the way to make friends is NOT to hit them or destroying their sand castles. Ty very much likes to be in control of situations (we understand that desire all too well) so he’s still learning how to deal with situations when kids are playing a game with rules that he doesn’t like (or understand). All of this is to say I was actually glad when the 2nd week was completed and Ty would be going off to beach camp and taking a break from his Edmonds campers.
The beach camp was a big hit and success overall with Ty. He got to wear a wetsuit every day and do lots of fun activities including paddle boarding, boating and snorkeling in the Puget Sound. The only negative? The wetsuit and shoes he wore created some chaffing sores on his feet, legs and arms. But nothing too bad.
This brings us to this week and hockey camp. What I didn’t mention earlier was that this hockey camp is being held in Kent – a good 30 miles south of Edmonds. Fortunately, when I signed Ty up for the camp months ago I arranged with some of the other parents who live in Seattle to carpool to/from the practices. Given that the camp starts at 8:30 am. I’ve had to deliver Ty to our carpool partner by 7 am. This means a brutal 6:15 am wake-up for Ty and getting him dressed and fed while en route to camp. The logistics have worked out nicely – carpooling has given Ty the chance to ride with other kids and families, and I think this is important for hi developmentally. The challenge has come with Ty’s competitiveness (again) and how he handles new situations. To say the least, the week started off on shaky grounds.
When I picked up Ty from our carpool partners, the mother pulled me aside and said that one of the coaches mentioned to her that Ty had a few crying episodes during the day. He said it wasn’t anything too bad but he was worried Ty would come home and complain about crying and not having fun. When I pressed Ty about it during the drive home, he said that he got frustrated losing during some of the drills, so he started crying and in one case, hit another player (who apparently had hit him first). Obviously this was not the start of the week we were looking for. We told him to do better on Tuesday and he agreed.
Tuesday night when I picked him up the other parent said he didn’t have any new reports from the coach about Ty so we assumed it all went OK. Ty mentioned that he had a “little rough” morning but said the afternoon went much better. We didn’t get any other details until Wednesday morning when we learned from another parent that the coach shared with him that Ty had another tantrum in the morning and had even swung his stick in anger at one of the other coaches. He said that if this happened again Ty would have to leave the camp.
Again I was crestfallen. First, I had to worry about Stone’s behavior at his count and wonder if he’ll be able to make it through the entire summer (there is no way we could afford to pay our baby sitter to be with him all day at camp). Now, I had to worry if Ty would make it through hockey camp without getting expelled. I decided that it would probably be a good idea for me to drive to Kent myself and talk to the coach in person so I did just that. We spoke after the Wednesday session and he debriefed me about the earlier situations. He said that Ty had a few situations but that when he misbehaved, the coach stuck him in the penalty box and allowed him to cool down. I told him I totally supported that action as I want Ty to learn there are consequences to bad behavior. But the coach assured me that since Tuesday morning Ty’s behavior had dramatically improved and he did great the rest of that day as well as Wednesday. We both shared our confidence that he will finish the week strong.
One of the silver linings that emerged from this week was experiencing the sense of support, community and teamwork from the other parents and families from Ty’s hockey team. One of the main reasons I wanted Ty to play hockey was because I thought it was important to learn how to play in such a team sport. I also wanted him to learn how to interact and socialize with kids his age. And I do believe that hockey has helped tremendously. But you never really know how people – especially kids – will respond to situations like these when you have another kid struggling like Ty has at times this week. And this has been the really beautiful part.
Ty has learned that he is part of a team – even though they officially stopped playing together as a unit months ago. The five other kids on his team have rallied to his defense – totally unbeknownist to me until yesterday, when I received the following text from another hockey dad:
“Having been here all week, including the locker room, I’ve witnessed many tantrums of Ty. One thing that has really impressed me is that your former players are ALWAYS willing to go sit with him to calm him down. Whenever another kid says something unkind bout his actions, one of your players will always stick up for him. They are all incredibly well behaved and kind. Could you please pass that along to the other parents?”
And so I’ve discovered that its not just the kids who get to learn new things through these summer camps. I’m extremely touched that Ty has great friends and teammates supporting him. This is an important lesson that will help him through the rest of his life.
Oh, and Stone has had another great week at camp – other than stealing food from fellow campers (the kid is eating a ton). But it looks like he’s back to his old self and my fingers are crossed he’ll make it through the rest of the summer.
One of the joys of being a parent is experiencing “first” experiences with your kids. You’re never quite sure what to expect in many cases and this is especially so when you have a child on the spectrum. Being the sports nut that I am, I was always excited to share a trip to a ball game with my kids. I took Ty to his first baseball game on Father’s Day in 2012, when the Giants were in town to play the Mariners. It was a very special occasion as my Dad (who shares my love for sports) was able to join us so we had 3 generations together at the ballpark. But as special as that day was, there was still a bit of a void for me because Stone wasn’t there with us.
Stone doesn’t care much about sports overall – especially watching them. As part of his ABA therapy he’s been playing catch with a football and baseball with the therapist (and I’ve followed up on it) and he has shown great talent in snagging the ball. So I do think there is hope and potential for him in playing some kind of sports down the road a bit. But when it came to bringing Stone to an actual Mariners (or Ducks football) game, there was just no way he would sit through the whole game.
And that’s what made today really special. For the first time ever, we brought Stone to a Mariners game and he made it through the entire game (not without a few protests to be sure, but nothing serious).
Today’s was the result of a lot of growth and progress by Stone – with some assistance from technology and food as well. Two weeks ago I happened upon a post on the Facebook group Snohomish County Asperger’s and More Support Group, “I have 4 extra tickets for the Mariner’s Autism Awareness Special game on Sunday, July 13th at 1:10. You get admission and ball hat for ticket. Selling for $20 each (what I paid). You would be joining 21 of my family and friends supporting our son.”
I thought that for $20, it wasn’t much of a gamble to try to take Stone to a game for the first time. He has been to Safeco Field twice before on Fan Fest days and enjoyed the experience. Like most kids, he especially enjoyed the ballpark food! Renee and I decided it was worth a shot taking the whole family to the game – Ty has turned into a bit Mariners and baseball fan so he was thrilled to go to another game.
We arrived an hour early and hit the concession stands. Given Stone’s dietary restrictions, we wanted to be careful with what we bought there. Unfortunately, most of the gluten-free and casein-free options come in the form of candy (either cotton or boxed). We did buy a couple of hot dogs though and shared those with with the boys (making sure Stone didn’t have any of the bun). But we made it work and other than a sugar spike (which we always have to monitor given his sugar cravings) I think we did a good job of making the trip feel special without giving into food choices we would later regret.
As I said, Stone doesn’t care about baseball too much so he didn’t really watch the game. But he was a good sport about standing for the national anthem and enjoying the atmosphere overall. We did have to use Renee’s smart phone for some of the game (so he could watch videos to keep him somewhat entertained) and by the 6th inning it was clear he was getting bored sitting in one seat as he started to ask to go home. But we told him it wouldn’t be too much longer and he was mostly content as long as he could sit on my lap (which is becoming increasingly more challenging given his growth spurt that has pushed his weight past 80 pounds).
As I told friends and family members leading up to the game, my expectations for Stone at the game were fairly low. I wanted him to have fun and to allow us to enjoy the activity together as a family. Most kids who go to a ballgame for the first time have no idea what is really going on during the game – they just enjoy the atmosphere and the experience. I know it will take Stone longer to learn and appreciate sports such as baseball and football but it will happen over time. For now I’m just grateful that he has progressed to the point that we were able to go and accomplish the main goal: we all had fun and we even made it until the end of the 8th inning. Ironically, Ty was the one who pushed for us to leave early because he didn’t want to see the Mariners lose (they were down 3-1 at that point). Given the success of the day to that point, I wasn’t going to argue with him about leaving early. And even though the M’s went on to lose, the day and experience were both a big win in my book.
Dear Integra Telecom,
Why do you hate small businesses?
You don’t know me – well, you sort of do. We actually corresponded a bit on Twitter last month about an issue my sister was having moving her phone number from her old business location (which you managed) to her new business location (which Comcast manages).
I think we’d all agree that we live in a pretty amazing technology age. We can do things today that we never dreamed of not long ago – GPS in our vehicles, smartphones, cloud-computing…you name it. Heck, technology is so advanced today that you would think that switching a measly phone number from one carrier to another could be done with a click of a mouse. As a matter of fact, I’m virtually certain this is the case.
Yet when my sister moved her store from Portland to Beaverton on June 3rd, you somehow couldn’t figure out a way to do this. All of her collateral, website information and online information has this phone number. Its how customers you know, communicate with her.
She called and called and tried to get resolution with your “customer care” representatives but to no avail. I only became aware of this ordeal because out of frustration I saw her post on Facebook on June 24 – a full 3 weeks after the switch was supposed to have happened.
I am so mad at Integra I could spit. My shop has been without it’s phone number working for the three weeks we have been open because Integra refuses to play nice and release the number to Comcast (my provider in the new place). I have had the same number for 10 years and it’s EVERYWHERE….biz cards, postcards, on our bags on our websites, everywhere on the web. I was told today that now Integra won’t release the number unless I open up a new account (and pay for it). Horrible customer service.. horrible communication…..and I am losing sales because nobody can call the shop! ARGH!!!!
Being the good brother I am, I tried to do what I could. I took to my twitter account and tweeted to my 50,000 followers what lousy customer service you provide. To your credit, you quickly (within a few hours) sent me a direct message and asked for her account information so you could resolve the situation. I provided this to you (via DM) and assumed the matter to be closed. My sister would no longer have to worry about having her phone number switched.
Except I was wrong. On June 30th I checked with my sister and asked how things were going. She said that there were STILL issues between you and Comcast. She didn’t know what to do. I sent another DM to your customer service team on Twitter and mentioned that the issue still hadn’t been fixed and she still doesn’t have her phone number. For some reason though, you didn’t respond to this message. I’ve included a screen shot of the interaction below for your recollection.
Not having customers being able to call your business COSTS REAL DOLLARS.
And guess what? As of today, July 11th, the issue is still unresolved! My sister reported that you rejected the port again from Comcast.
According to your website, “At Integra, we understand our customers need reliable, secure and flexible solutions delivered with unmatched expertise and quality of service. With an unwavering focus on superior customer service, Integra has earned some of the highest customer loyalty and customer satisfaction ratings in the telecommunications industry.”
I find this to be highly questionable. As a matter of fact, its laughable in light of my sister’s experience.
She is a small business owner who is trying to make a living in a new location – without her business phone number. All because of your incompetence and ignorance.
The only conclusion I can draw is that you really must really hate small businesses.
I’m grateful that I will never have to rely on you or your company for any services. In the meantime, I hope you quickly figure out how fix this horrible situation that you have created.