I spent the last 3 days in a leadership training class at work. I am fascinated by human nature and what makes people act they way that they do. This is a group of 15 managers at my company from all over with no relationship to each other, much like the phrases in the Beck song, and we all were there to become better leaders. The feelings I had toward some of the folks initially were not the feelings I had at the end of 3 days. Relating to people in the typical world is natural, easy and ingrained. We did several exercises to “know” ourselves better and I do think I know myself, good and bad, very well. I also know that I am truly a work in progress. The most important thing I have achieved, from a personal perspective, is not to judge people. You truly do not know what another person’s baggage is; they may have tremendous personal struggles but work every day to wrestle them down. I know for me I work hard every day to think about what is good and positive in my life and not feel bad for the things that are tough or challenging. I do feel that it is a choice each day and although I have many days of sorrow and frustration, they are not nearly as many as they could be.
We each had a 360 evaluation done which includes numerical and anecdotal feedback from our peers, direct reports, manager, and clients. I braced myself when I opened the confidential envelope. The info was predictable, I was relieved. I do my typical dance of discounting the praise and sweating the criticism. Ugh. But, the most important thing really is the relating. The fact that people take the time to comment means they care and you can always make progress when that is the case.
Whenever I read a book or take a class where there is self-reflection I cannot help but think about Bryan. I wish I could just get a good feel for what he thinks. I wish I knew how he felt about himself and his autism I know he knows a lot but I don’t know what he thinks about. With Jason he asks questions about my childhood, about my likes and dislikes and he imitates me. Children with autism do not imitate. I know it sounds weird but sometimes you know a child “gets it” when they imitate. I hear Jason say my expressions and use my mannerisms. Sometimes I like it and sometimes I don’t but I know he is understanding and processing. With Bryan, aside from some language improvements the cues are very subtle. I have read lots of books by Donna Williams and have heard her speak. She is a 40+ Australian woman with Aspbergers. I heard her speak about 5 years ago. She explains how she did not speak until she was 9 and all of the things that were going on in her head. Her first book, Nobody Nowhere, was a huge eye opener for me. I wanted to throw it in the garbage and cry at the same time I couldn’t put it down. I did not read the Temple Grandin books first so Donna’s books really enlightened me. It led me to what is Bryan thinking rather than what do I think he needs to do. I felt like a voyeur reading her book and although I have read a few more of her books, nothing touched me like the first one. It opened a door for me that I did not even know was there. Stepping through the door was scary and exciting all at the same time. My boy is in there and he’s thinking and learning and doing. But, that also means he knows he is different and that the world perceives him differently. This is crushing. We all just want to belong to feel camaraderie and connect. Autism is the ultimate disconnection.
I received a notification from WordPress that I have 100 “likes” on my blog! So funny to think others will like or relate to my life. I have had no less then 10 friends from high school, college, law school, etc. share with me that they too have a child on the spectrum. This info instantly makes me cry. I am not sure if I cry because I am touched they shared this with me, or because we could’ve helped each other for years and didn’t know it, or because I can truly imagine their struggles. Facebook helps with connecting too. I think the sharing comes from “I’ll show you mine if you show me yours” and by now I’m pretty damn naked.
In the next few weeks, as we approach April, Autism Awareness Month, our lives are packed with Autism related activities. Luckily Earl already got our blue lightbulbs from Home Depot to light it up blue on April 2. Next Saturday is Surfers for Autism in Deerfield Beach and we have been attending since the first one that was held about 5 years ago. Local surfer dudes and dudettes take our kids into the ocean and teach surfing. It is a spectacular event. The couple that runs this organization have “taken it on road” all over Florida. We are hosting a fundraiser at 16 Handles Yogurt Shop. They are generously donating a portion of the proceeds to Autism Speaks and our team. We have received tons of positive responses from our locals and we are trying to leverage all outlets, parents friends, kids schools, therapy center, work, etc. One of my friends from High School, (yay New Ro) is participating in a fabulous event riding bikes to support autism. The website is www.gtd4autism.org. Please check it out if you can. His son’s name is Kyle and the team is Kyle’s Runaways II. We are supporting each other. He reached out to me and shared the story of his family. I am grateful to hear from him and to share our journey. We connected through facebook, saw each other briefly at the night before the High School Reunion in September. The real connection, the people connection, has been there since high school and our shared experiences have brought our friendship alive again. I am really old school; friends from my childhood warm my heart. Sometimes facebook, twitter, etc can be a complete escape, waste of time. Other times it can connect you with people who can change your life just by hearing someone say “hey I’m with you”.
Bryan had a play date yesterday afternoon. (ok admittedly I am all over the map today). His classmate wanted him to come over and the family is terrific. They have two older boys and their oldest was Bryan’s football buddy this past season. Can you imagine such a nice kid; he has his own brother with autism, lives with it every day, yet volunteers with kids with autism too? Clearly they are doing something right in that house. We had a fabulous experience. Bryan and his friend were upstairs playing games and I sat with the parents downstairs on the couch just chatting. The Dad was telling me how his youngest, Bryan’s friend, lights up their lives. Although we all share the worries, hopes and dreams for our kids, it was so inspiring to hear a father say how much he enjoyed just seeing his son’s smile and sunny disposition. We are both very lucky; our boys smile almost all of the time, are fun-loving and verbal. It was a 2 hour playdate, the most Bryan and his friend could handle. I don’t know how much they talked to each other or truly interacted, but the sheer comfort of each other’s company, since they are in the same class, relaxed them both. There were hugs and kisses all around when we arrived and when we left. Bryan was excited on the way over and very proud of himself on the way home.
Our world is filled with activities I never expected to participate in; special needs this and special needs that. It sometimes seems foreign and sometimes fits like a glove. When I was growing up kids who had special needs were retarded or handicapped. Ouch. Either way I stayed clear of those kids or truthfully I was neither nice nor tolerant. Life is filled with various checkpoints and mirrors. Growing up, not in the literal sense but more in the figurative sense, if you want to, forces you to face things about yourself and learn how to change or accept yourself. Change, not so easy. Acceptance, not so easy. I guess it’s true that anything worthwhile really does take hard work.
An interesting thing I have observed in my community of autism families is how tolerant we can all be of other kids’ autism and how frustrated we get with our own kids. (I know grammatically that probably does not make sense and should be how they present their autism, or how their autism presents itself, but I need a little poetic license here.) Is that because our kids autism is a reflection of our imperfections? Hmm that is about as deep as I go! But truthfully it is interesting how when Bryan is acting out, jumping, flapping, screaming I am all over it. When I go to autism functions and another kid is doing their “thing” I hardly even notice it. I suppose it’s like all parenting things, just on another level. I am always fascinated by how parents handle different things in public. One family we have known for years, almost since we first got here, has a nice boy who is coming along verbally, but very slowly. These parents are in this kids face so much, the kid can barely breath. I feel like one day he is going to find his voice and tell them to go shove it. I feel like saying to them, damn, back off for a minute, but of course, I don’t, it’s not my kid. I see other parents with never ending patience and I am awestruck. I went to Walgreens with Bryan tonight, gosh I go there a lot, and he wanted to get gum. He loves to chew gum and we allow him to chew sugarless gum since he no longer swallows it. Truthfully it is great for him; he grinds his teeth and when he was younger he used to have chewy tubes to help him get that need to grind out of his system. He wanted to get gum tonight and I told him if he was a good listener at Walgreens he could get some. We were waiting in line at Walgreens for our prescriptions and he was screaming “I love you” , ” I can rent Captain America with Dad”, “Dad is going to softball”. Funny thing is that I still thought this was good behavior. He was sitting down near the prescription area, not hurting anyone and not really bothering me or anyone else. I kept shushing him and then I caught myself. Why does he have to shush? He is a little bit loud but I’m the one with the problem, not him. He is allowed to get some things out and he has been waiting all day to spend some time with me. I bought him the gum and gave him a kiss.
I took a long walk tonight. Warm, clear, South Florida night. Typically I would have a small person or dog in tow, but tonight I went by myself. I needed to go to Walgreens to pick up Bryan’s prescriptions, a drug run of sorts. It’s about 3/4 mile away and just seemed like a good thing to do. Listening to music on my iphone, feeling the sun on my back I realized this was a moment to exhale. Both boys went back to school today after Spring Break. Bryan typically would be crying and crying or vomiting but he only had a few tears and held it together. He has been better lately in every way. Jason spent most of Sunday afternoon with my sister, running errands and helping her. So sweet.
Saturday night we had friends over for pizza and subs; low-key, relaxing. They have a similar situation to us; first boy on the spectrum, second boy typical. Their older son and Bryan are in the same class. The young ones get along great. They share a bond that is inexplicable to most. They can relax. Neither one of them is phased at all by the other one’s older brother. They relate well and had so much fun together. The sheer ease of it was great for all of us as adults too. There is something so incredibly relaxing about being with another family with a child on the spectrum. They get it, and like most of the people we like to surround ourselves with, they also see the humor in the completely humorless.
On Sunday our parents and my sister and a family friend came over for a bbq. Earl made one of his famous bbq feasts. No one ever leaves our house hungry, not for days. There was no drama, no issues, no problems. Just a nice family Sunday evening in our home. We each have good jobs, our kids are healthy, we laugh a lot. Take a snapshot because the other shoe can drop at any time.
Earl loves that joke. Whenever either of us has been in the hospital or ER for any reason he always jokes, “hey are you the head nurse?”. He does not actually say that to the nurses; or does not usually, but like all corny husband jokes, it gets a chuckle or an eye roll from me.
The boys rocked the medical appointments this week. Some kids go to the beach or vacation on Spring Break, my kids, they go for check-ups. To me, if they get good reports, that beats tequila shots in Cancun any day. On Wednesday was the blood work and as I described before, they sat like perfect little angels to give 5 vials of blood each. Yesterday, I took both boys to the dentist and they listened, followed directions, and came out without cavities. Bryan went to the psychiatrist on Thursday afternoon. Our sitter brought the boys there and Earl met them there. We have so many appointments we do ‘divide and conquer’ to get it all done. Our psychiatrist said this was the best she has ever seen him. She had an opportunity to talk with him alone and that has never happened before. I am very happy about this because it is so important for him to learn how to function on his own and answer questions. At times I feel like he does not answer waiting for me to, or will give any kind of answer that pops in his head because I will correct it. I am learning how to back off (well I’m trying to learn how to back off!!) Earl also made a point with her not to talk about him like he isn’t there. Go Daddy!! Bryan does seem “clearer” and we decided to keep the meds as they are; no changes, no increases in dosage, and nothing new and experimental. Earl took Jason to the psychologist while Bryan went to the speech therapist (wow I’m pooped just typing all of this). Sessions were good, uneventful. I think uneventful is my new favorite word.
Today we went to the orthodontist. Jason had to have his palate expander checked and the orthodontist was very pleased with him because he has been so diligent with his nighttime headgear. Jason is making great progress. Bryan had to have a 360 scan and a consultation. Bryan needed to sit still for this scan. I told the nurse I should come back with her but first she wanted to try on her own. She then came to get me to ask me if I could get him to stay still. I brought the drill sergeant aka Jason and he got Bryan to stay still. Bryan completely trusts him and Jason knows how to step his game when necessary. He was so funny, “hey buddy you just have to stay still for one minute and then you are done”. Bryan did, but I caved. I told them both if they were good listeners we could go to Game Stop and/or Target to get a little something. Some folks might call that a bribe, I call it an incentive. Either way, they both did what was expected of them with no problems, no fuss, no drama. I know some of the success comes from familiarity. They have a lot of doctor’s appointments so they know how to behave at doctor’s appointments. I also am hopeful that Bryan’s ability to succeed at these appointments has something to do with maturity. Next week is the endocrinologist and I am hopeful to continue our streak.
Both boys have growth issues. Jason only has half of his pituitary gland and is growth hormone deficient. He has gotten growth hormone injections since he is 18 months old; he gets these injections every night at bedtime. Bryan stopped growing between ages 4 and 5 and was diagnosed with idiopathic short stature (doesn’t grow on his own, not sure why). Bryan also gets nightly injections of growth hormone. They have no issues with these injections; they take them without tears, flinching, no problem. It is a fact of their lives and they accept it. So we see a pediatric endocrinologist every 3 months to check on the growth hormone, check their growth, etc. Prior to our appointments the boys have to have blood work. It is critical as their bodies develop and grow that the doctor checks their blood to make sure they are not prone to diabetes or have any adverse reactions to the growth hormone. For Bryan this is particularly tricky since he takes other meds prescribed by the psychiatrist. Yesterday we went for blood work. We have no problems at all with blood work; both boys know what to expect and they sit with the tourniquet and needle like an adult, actually better than some adults. Just another round of blood work, no big deal. In fact Jason was worried yesterday that the blood work was supposed to be fasting and they had eaten breakfast. I assured him it was not fasting and that we were ok.
This morning we went to the dentist. Both boys needed a check up and a teeth cleaning. We go to the most phenomenal dentist on the planet. He does NOT charge for special needs kids. He has a great practice and it’s his way of helping the community. The nurses take both boys back and I just sit in the waiting room. Did you hear that? I took my special needs child to the dentist and actually read a magazine in the waiting room. The first time we went there and the nurse came to get the boys, Jason didn’t know that the whole staff knew that Bryan had autism. So he stopped the nurse on the way in and said “I just have to tell you, my brother is a little crazy.” He said it in a soft caring voice, a four year old not really well versed in the autism lingo. At 9 he can now explain it better than most.
They both got a great report at the dentist; no cavities, yay!! We decided to stop at Target on our way home. I needed a few groceries and I told them they could each get some sugarless gum. We are walking through Target and Jason is doing his typical negotiating for toys. All of a sudden Bryan starts to cough, and then puke. I didn’t see that coming at all. He is puking and saying “I can have a snack” at the same time. Now he is screaming and crying and carrying on. He pinched me and we alerted the clerk to clean up and left abruptly. What’s easy is hard and what’s hard is easy. Welcome to Bizarro Spring Break!!
I am working only in the afternoons this week, it’s spring break here and the boys are off from school. Typically we send them to camp but not this year. So this morning I decided to take them to the new dog park we have here in town called Barkland. It is a really nice dog park and our mini Aussie Riggs, who is almost 7, loves to run and play with the other dogs. I didn’t get 5 ft into this park when an older woman with a young man about 16 (grandmother and grandson) who are their with their Sheltie, come over and ask me a bunch of questions about Riggs. Apparently they cannot get over how fast he runs, how sweet he is, and did I ever think of doing agility stuff with him. All good, he is a great doggie.
Bryan does not care at all about dogs or cats. He essentially ignores Riggs and our cat Casey. I think he truly likes them but because we have always had at least one dog and a cat, it doesn’t mean that much to him. Riggs, as a herding dog, is super protective of the kids, particularly Bryan. If there is any horseplay in the house, he barks and gets in between the kids or the adults and kids. Riggs flat-out does not like anyone messing with Bryan. Ok, back to the story. Bryan and I went to sit on a bench; he doesn’t want to be at this activity and basically is tolerating it while Jason enjoys running with Riggs, seeing other dogs, and throwing a ball. So this woman comes over and is talking on and on to me about dogs and shelters, and other nonsense. Bryan has been jumping, flapping his arms and asking for lunch a bunch of times, the usual. She looks at Bryan and says to me “have you ever considered doing horses for the handicapped?” Ok, ok, ok. I have listened to your nonsense for long enough. Who asked you lady? Can’t I just sit on a park bench like the rest of the world? Do I have to discuss my family business with every dope that walks along? I know you are probably thinking I’m being harsh. It reminded me of when I was pregnant; everyone has a comment on your appearance and touches you and guesses the sex of the child. Very strange, really.
Don’t get me wrong, I love when people provide info and want to help. I appreciate when people, who I’m engaging with, offer their words of experience and wisdom. But, unsolicited, uninformed advice, well keep that one to yourself. I am just a Mom, enjoying a beautiful sunny morning with her two sons and her dog. Can’t that just be enough for 30 mins??