The door is ajar

This blog is directed to Bryan. When I first started writing I wrote for me; to get my feelings out, to share and just to give people a glimpse of our lives. But as time goes on I realize the boys may find this interesting later in life, reading what I was thinking about them at various times. I try not to over intellectualize when I write; I like things to  just pour out. Since we left Pennsylvania last week I have not been able to shake the wonder of Bryan’s daily existence at camp. Can’t I get one of those tiny video cameras to follow him around?

Bryan, what are your thoughts about summer camp? Do you like it, are you happy there, do you understand Mommy and Daddy’s reasons for sending you? I have always learned from facing things that were hard for me, but at the time I didn’t like my parents very much for it. Now as a parent I realize how tough it is on both sides. I always had separation anxiety as a child and each time I did something that was difficult I became more confident in my abilities and was able to draw strength from those triumphs. Fighting your demons,  yikes it sucks. We hope you will feel that way too. I want you to know deep in your heart and in your head that we sent you there to learn things we cannot teach you, no parent can teach true independence. We want you to be able to do for yourself. We believe in you and know that although you struggle with language, you do not struggle with intelligence or emotions. By taking care of yourself you will grow and mature. We are your parents, it is our job, and our deepest desire to give you the tools to succeed in life. We also want you to have fun. We want you to have the benefit of what we had, summer fun, games, sports, trips, etc. We also want to give you the opportunity of friendship. Perhaps this is your biggest hurdle; not actually approaching other kids, but developing real friendships with conversations that are meaningful and appropriate. This will come over time, but only through constant exposure. If we don’t give you these opportunities, how will this happen? I am amazed by parents that don’t take their kids anywhere  and then wonder why they don’t know how to behave in public? Our feelings are if you want your special needs child to learn how to do something, show them how!!!

Bryan, we love you for who you are but we also want you to be the best Bryan you can be. You have tremendous charm and warmth and we adore all of you. We don’t want to change you from being you, but we hope you understand that we want to give you everything we know how to afford you a good life. We do the same for Jason, but as you know, some things come more naturally for him and for others who do not have autism. Autism is just one aspect of who you are. We know you are aware that you have autism; but we are just not sure if you truly know what that means.  We do know that you understand that you are different in this way. To us it means you  have to work harder in some areas than other people do. In your case, expressing yourself verbally and having conversations are  your biggest challenges. We wish we could peek into your mind to see if you truly know in your heart how grateful we are that you are our son, and what a beautiful spirit you are. We love you and your autism.

The tough parts for us are just not knowing what is in your mind. I know at times you tell us in your own way but I always want to be sure we are getting it right. Do you like camp or do you just say this because you think it’s what we want to hear? I am hoping some day you will be able to fill in details for us from your childhood. Right now Daddy and I just talk about what we think will be best and try to be as honest and practical as possible.

Pour a little sugar on it honey

Forty-eight hours up north. We got to Bryan’s camp at lunchtime on Friday. The kids were eating lunch. They asked if we wanted to wait until he was done eating but I couldn’t wait. It was a little selfish and a little impulsive but after waking up at 4:30 in the morning, switching planes because our 7am flight was delayed, I was in no mood to wait. What I saw was both a treat and a reality check. Bryan was sitting at a table with his four counselors and friends and the first thing I saw was a much thinner version of the boy who left for camp eating a cucumber slice and two green beans along with a slice of pizza. Who is this veggie eating child? It was disruptive when we saw him and he got anxious and puked. Oh yeah, that’s my kid. After that he finished eating and we waited in the other room. He was delicious when we got a hold of him. We saw his room and some of the “stuff” he has gotten from us, my sister, my folks, my sister in law, mother in law,  my aunt and uncle, etc…People were telling us what a great kid he is and of course we felt proud and confident in our decision to send him.  The camp had packed him a bag and off we went. As predicted he wanted me to sit in the back of the car with him and we held hands as we drove to our hotel. Yummy!!!!!!!!!!!!!!!!!!!

We went to the movies and he sat in between us and put all of our hands together. So sweet. We left the theater, went back to the hotel. We stayed at a charming bed and breakfast; the online reviews had raved about the adjoining restaurant. We had made an 8pm dinner reservation. It was rainy and cool and it was nice to know we were not going anywhere after our dinner. We sat down to eat and Earl ordered a scotch and I had a glass of wine. Bryan was giddy with his root beer. He was smiley and relaxed and if I didn’t know better I would think his root beer had been spiked. As he sat at dinner and held my hand I literally could feel tension seep out of my neck and shoulders. It was the first time in a long time that I truly felt light and free. As the meal progressed they had two guys performing live music; they played a lot of 70s oldies and the whole place was singing along and folks were dancing. Bryan wanted to dance. First I danced with him and then Earl danced with him. He ordered dessert and smiled a joyful, relaxed smile.  He was like a little man, he had steak, a chocolate lava dessert, danced and was ready for bed. His infectious happiness even charmed our waitress who said he was adorable. We went back to the room to go to sleep and I snuggled up with him until he drifted off. I admit I kissed him about a dozen times and he giggled a little and said “rest with me.” In the morning he snuggled with us in bed and decided to take bath in the jetted tub. He sat in there like a prince and I got to wash that signature thick and lustrous hair. A tactile treat for the Mom!

But of course reality set in for him and the angst crept up on him. He couldn’t eat breakfast, he puked a little. He was anxious about the plan for the day. He literally did not eat more than two bites the whole day and we kept trying to make sure he had water so he wouldn’t get dehydrated. He knew we were going to spend the day at Jason’s camp and then take him back to his camp. He knows he comes home on August 10 but repeated it/asked it about 300 times throughout the day. He cried in the car on the way to Jason’s camp. I was choking on my guilt. I wanted him to relax for himself and enjoy the day; but I also didn’t want Jason to have a bad visiting day with his brother crying. We finally reached Jason who was waiting for us at the entrance to the camp. He and I cried and hugged.  He cried when he saw Bryan and they talked to each other in their special code words and Jason was able to wrangle a smile out of Bryan. Jason never missed a beat. We spent the day meeting Jason’s friends and counselors and hearing nice things about him and his ability to go with the flow.  Earl and I were so proud of him. He has tried a lot of new things and seems to have made some solid friendships. The goodbye to Jason was a little emotional but he held it together.

Interestingly enough, Bryan seemed almost eager to get back to camp. I hate to say this but it was almost as if he knew how much more he had of his “sentence” and he wanted to hurry back and finish doing his time so he could come home.  Although he seemed happy to see us on Friday, I think the anticipation of the visit, the stress of uncertainty of Saturday, led him to find relief in the familiarity of camp. Or at least that is what I’m going to tell myself until he comes home. Tonight we will have a call with his camp speech teacher and academic teacher to learn how he is doing. I called yesterday to check on him. They said an hour after we left he was fine and back into the routine.

We had a great visit after visiting day with my BFF Pammy and her husband and their 6 year old daughter (our future daughter-in-law). We laughed, we drank, we ate and we relaxed.  We soaked up as much as we could from each other and left the next morning to head home.  This morning while driving to work I was thinking how happy I am that we decided to send the boys to camp, how lucky they are to get those experiences. Only time will tell what lasting effect the summers have but all indications seem positive.

Do you wanna be happy or do you wanna be right?

One of my cousins taught me this expression. It’s great because you need to know which one you want to be in any discussion, exchange, relationship. Wanting to be right, well that’s juvenile, counterproductive, etc. Wanting to be happy, well, truthfully, it’s an acquired taste.

Everyone has been asking us, “how’s it going without the kids around?” Well, it’s been an adjustment. You don’t go from being parents with a million responsibilities to love struck coo koo heads running around naked. Sorry Earl. But you do have an opportunity to learn a lot about yourself and your marriage. We have learned a lot!! Mostly I have to report it’s been good. We approach things very differently which can cause friction. I am a morning person and Earl is more of a night owl. I like to get up and get going, he likes to ease his way into things. Neither way is right nor wrong but without the kids as a buffer, the differences can be glaring.  One thing we constantly argue about is whether or not one of us told the other one something. Sounds nuts but when you feel sure you have communicated something and the other person seems surprised it can be seriously annoying. However, since we are both getting older, this is only going to get worse and not better, so you better put on your big girl or big boy pants, repeat yourself and get on with your day.

But you know what has been great about this time alone? The growth. Years ago we could argue about things that were so ridiculous. Now we make jokes about our differences and poke fun at each other. We have been through a lot together and we have gained a certain kind of trust that comes from having had each other’s backs in the trenches.  We try to laugh off things that we would not years ago. We appreciate each other more, and like most relationships you value where you started and where you are now. We are approaching our 15 year anniversary this fall. Nothing is perfect; we have plenty of  issues like other families and couples. We have times where we are frustrated with each other and get angry. The difference, as I see it, is that we both want to be happy and for that we both will sacrifice our need to be right.

True Dat!

Everything is a damn thing. So we applied for reassignment for Bryan for middle school. Let me translate if you do not live in crazy South Florida. Every school, public that is, in one school district is totally different. We applied to a different  middle school for Bryan and very luckily, our request was granted and Bryan can go to the middle school we think is best for him. In the letter it states that you must register him for the school by July 21 or you can lose your spot. Ok, we got the letter on June 28 and of course on June 29 I called the school. No answer, no recording, nothing. So I called again this morning. The woman who answered said you can’t register your child until July 23 because the person who handles registration is out until then. You see where this is going…. So I explain that my son had gotten a reassignment letter and we don’t want to lose our spot. She said fax me the letter, already did this, and you don’t have to worry. That is just freaking wrong.  It’s not enough that we had to wait from May 1 until June 28 to find out if he was going to get in, now this? On the way to work I was flipping stations because Howard had repeats and i’m over them. On one of the stations was Kelly Clarkson singing her “What doesn’t kill you makes you stronger”. It’s a great song, but F her. I’m over it.

Boys seem to be doing well at camp. Photos of Jason are cute and smiley. The photos of Bryan are harder to read and we haven’t really seen too many good ones. Last night we called Bryan. This week was the first week we could call him and we waited a few extra days to minimize disruption. We were allowed 3 minutes and that is plenty of time for Bryan on the phone. He sounded good, calm. He said his usual “I can see you on July 20, what day do I see you?” a bunch of times but he did answer questions about friends, activities and food. It was just so nice to hear that sweet little voice. I had to email the camp. It was gnawing at me that I had not seen any close up and/or smiling Bryan photos. I know it was crazy to write this email but I needed that peace of mind/piece of mind!!! We got a good photo yesterday and I could see how much his hair has grown, he’s lost weight and generally he looks good. Ahhhhhhhhhhhhhhh

We got a call last night from someone who is very dear to us. He conceptualized and realized the Parkland Buddies program which matches up special needs kids with typical kids for all kinds of sports. The benefits may seem obvious, great for our kids to get some sports exposure, exercise, team building, etc. For the typical buddies they learn compassion, empathy, and pure kindness. They too have to step out of their comfort zone. The incidental benefits, which ironically are not incidental are all of the adult relationships we have built from being involved in the program. The Saturday afternoon hour of Soccer Buddies is way more than the parent respite it was designed to be. It gives the parents a sense of community and a place to shed self-consciousness. I have learned more about what to do for Bryan during these hours than any 10 doctors could prescribe. We are all like little sponges absorbing info from each other and squeezing out our own lessons learned. The reason for the call was to get my support on something he was doing to expand the program. Slam dunk, I”m right there. I was reading a fiction book when he called and just talking to him jolted me back to reality.  A reality I welcome; where there are people who give a crap and care about our kids.