Sugar, yes please.

There is truly nothing greater in this world than the joy your child brings to you. While the last week or so has brought some of the greatest highs, I have experienced some significant lows too. I try to keep the highs front and center, but I often find myself shaking my head at some of the nonsense in my life and some of the negativity that tries to latch onto me. One of the challenges I face, as do many others, is juggling all of my responsibilities. I get a lot of “you have a lot on your plate” to which I reply, “my plate is a platter!!” but hey it’s my plate so whatever. Everyone does this, so it’s not in any way unique to me, however, I not only want to and have to handle them, I want to do them well and with a good, positive attitude. I function well at a high activity rate, but every now and then one thing pushes way too far and it’s the straw that broke the camel’s back. I am reminded of that silly board game that was around when I was a kid where you literally kept piling straws in a plastic camel’s back and then when there was one too many and that damn camel fell, you lost the game. ha! Sometimes I feel like that camel (ok, not a great visual) and I’m daring people to put more on. So what happens when there is one too many…? I don’t have the luxury of hiding out from my responsibilities. I do try to do as many fun things as possible as a way counterbalance many of these difficult or upsetting things. Work hard/play hard may be a cliche but for me, it fits. I just don’t want to miss anything!! straw

So yesterday I was at maximum capacity for BS, nonsense, stress, aggravation, responsibilities, etc. A few things have been brewing and a few things have been tugging at me and I was just feeling a melt down come on. Not exactly a meltdown, more of an implosion where a good cry/sob was imminent. One of those times where I wish I had the ability to go home, get into bed, under the covers, and just get into the fetal position for a few days.  No such luck! I had to take the boys to the orthodontist in the middle of the day. Not the best timing, but what can you do; they were taking them at the same time so that helps but after being out of the office for two days last week, I was feeling very work overwhelmed.  They decided to take Bryan’s braces off and while that is exciting and great, anything with Bryan has to be choreographed properly. To make a long story short, we needed some lasering of his gums and some bonding which were all supposed to happen at that appointment when the braces came off. It was not scheduled properly by the orthodontist and that was about one straw too many for me. You see Bryan’s teeth had shifted previously after the braces came off because he would not wear his retainer and removed the permanent retainers multiple times. He had to get his braces put back on so you see this was sort of big deal. While we were trying to work it out, Bryan was so excited to get his braces off. The orthodontist’s office is an open room with many treatment chairs where lots of assistants are working on kids, in other words, a room full of about 12 people plus the two orthodontists who come in and out. Bryan was so elated, he grabbed Jason and me and the assistant and made us put our hands in the middle (as if we were a sports team getting ready to play) and he said “1, 2,3, braces off,  yay!!” We all lifted our arms up in unison. The whole office erupted in laughter and cheers and then I was struggling to hold back the love cry. He completely leveled me. How could I possibly feel anything but joy?? Get a grip Jane. Jason and I giggled and smiled and the whole thing was met with hugs and high fives. Everyone in the office, including other patients, assistants, office staff, doctors, etc. were laughing and smiling. After that Bryan had to have several injections in his palate for the laser and impressions and bonding. He sat like a champ. No anxiety, no squirming, nothing. If you know autism you know one thing: what is easy is hard, what is hard is easy. He never moved for a minute and sat there for his work for an  hour and a half. The minute he got up the anxiety kicked back in and he wanted to know about when he would get picked up from camp in August.

For me, a great reminder that no matter how bad you feel, no matter what is getting you down, that one drop of sugar can make everything sweeter.

Live and Let Live

I can’t take people sometimes. If you follow the news in the Autism world, which for your sake, I hope you don’t have to, you seriously could go nuts. One day they say, if your child had low birth weight or was premature, they are more likely to have Autism. Next day, if your child has a big head, they are more likely to have Autism. If you go on the GFCF diet, your child will be able to speak better and may get rid of all Autism behaviors. Now they say there is no real benefit to the GFCF diet. OMG, stop the insanity. Who the hell knows what works or why?? I’m starting to feel like Goldilocks, this drug does too much and this drug does too little, which one is just right??

And what really bugs me is not that these reports come out, because we want research and accountability, it’s the reactions to these reports. People take these reports like they are a personal attack. “it is the mainstream pharmacy lobby that is against the diet”. ” My child was not premature, they are wrong”. “Jenny McCarthy’s son was cured (by the way, just for complete candor, I don’t believe Jenny’s son had Autism) so mine can be cured too.” Gosh, can’t you people shut up for 5 minutes and focus on your own kid and not worry what one doctor says.

Damn, if you don’t know by now that each person has to read these reports and decide for themselves what works and what doesn’t then you have bigger problems than Autism.

Get it people, there is no cure, no magic serum, try what you can and do you want to  but stop judging. Accept your child and love them up. No one knows someone else s kid. I try to live my life, my religious  beliefs, my political beliefs, and my Autism “beliefs’ all in the same way, LIVE AND LET LIVE.

All You Need is Love

I don’t really believe that all you need is love, but at times it is totally true. Almost every night when I get home from work Bryan comes out of the garage to greet me. So last night, when I got home, he came out and when I got out of the car, he stopped me, looked me straight in the eye and said, “I love you Mom”. Now I know you are thinking, BFD, but it is, because of the delivery. He says this all of the time, I’m lucky, spoiled, etc. But, last night, there was the twinkle in his eyes, a moment of clarity where there was not one drop of autism at all. These moments are rare and must be acknowledged and treasured. These moments are the fuel of my life, they level me and motivate me simultaneously. You have these times where you think, he is all in there, don’t forget it, just because he can’t say something or express himself well doesn’t mean he doesn’t understand every word you say. It’s the ultimate reality check for me. I kissed him and put my arm around him and walked into the house. Then, we went back to crazy normal (that is an oxymoron for use by autism families) where Bryan is yelling for our sitter to leave, gets her keys, phone, etc and literally shoves her out the door. We laugh because he just wants to move onto the next thing, it is not personal, he ADORES her.

Just Desserts!

Sometimes you get what you deserve. This morning I had a 7:30 am mammogram, who needs coffee to wake you up when you can get your boobies smashed on an ice cold machine on a cool rainy morning. And why do I sweat so much without deodorant even when it’s not hot out? Good thing I put the deodorant in my purse or I would’ve been funky all day. Ok, enough about that nonsense. So this morning, as I often do, I wore one of my autism awareness necklaces. I particularly like this one which is a blue crackly glass puzzle piece and it hangs  sort of off center. The puzzle piece is on black cord so I was able to wear it during my mammogram. I get in there and the technician tells me she likes my necklace. I thank her and then here it comes, about 25 questions, on how did I know my son had autism, how old was he, how is he doing now. So I am thinking to myself, geez, do we really need to be talking about this at 7:30 in the morning while you’re squeezing my boobies onto this cold machine to make sure I don’t have breast cancer? But-you get what you deserve, why didn’t I just remove it along with my lovely Target bra? If you are going to be an advocate for awareness this is a 24 hour job. You can’t disassociate just because it’s early or not the topic on your mind. And, truthfully, it’s probably my fault because I started it. I noticed she had an unusual jewish star with  a cross inside necklace that was very interesting and I remarked about it. She told me about her recent trip to Israel. What do the kids say, “you get what you get and you don’t get upset”

I’ll shut up now and continue raising awarenes!

The Ties that Bind

A few years ago we went to Disney for a few days over New Year’s. The four of us, plus my folks and my sister. Bryan loves, loves, loves when the family is together. Another stereotype busted, kids with autism are detached. No one is more attached, affectionate, loving than Bryan. I get about 20 kisses a day and lots of yummy hugs. He also wants to squeeze my belly, jam his chin into me and pinch, but you take the good with the bad! In any event, we were at a timeshare place and we had a big dining room table that seated 8. We were all sitting at the table having breakfast and Bryan put his arm around both of my parents and put his face in the middle and said “together”. He loves to put my hand with Erwin’s hand or my hand with my mom’s hand. He gets the family connection. The unconditional love and acceptance surrounds him like a hot bath, another of his favorites. The pure delight on his face, when he sees my sister never gets old. Each night we had happy hour when we got back from the parks. One night when we were talking about happy hour, someone asked Jason if he knew what happy hour is. He was about 5 at the time and he said, “yeah, when someone knocks on your door and comes in and then you’re happy”. So sweet. Perhaps he didn’t see the vodka or scotch bottle.

It is particularly meaningful that I was writing about family today. Last night my great Uncle Herbie passed away at the young age of 96. He was so lovable. He was the last of 9 brothers and sisters who were beloved, and this crazy, fun group of 9 included my Pop, Victor Henschel who I have written about before. It is truly the end of an era. My mom is away with my aunt now and I know she will be very sad that she is not here to say the formal goodbye.  Uncle Herbie looked so much like my Pop that to see him, was to just get that little bit of Pop and to preserve that feeling of being a kid, not a middle aged person without any grandparents left.

I was thinking about family so much this week. My cousins, who are truly like my brothers, always “show up” for me. It’s hard to describe this in a way that will really illustrate my point. We don’t see each other every week or talk every day but the glue, the blood connection is always solid. To me they are a lifeline in a way,  that life preserver of love and commitment that gives you a boost and saves you from drowning. When I had lunch with my 3 first cousins (they are brothers) and told them about how Bryan was lost at camp and we didn’t know about it, they listened so intently. They each approached this crazy story in different ways, based on who they are and their experiences, and also in the way the know and love me. I knew I would get good advice and counsel, but I got way more than that. I got pure empathy. Empathy for me and for my husband. I left that lunch all choked up at what a lucky girl I am. I love their wives too, they are as different as the guys, and each are loving and caring. I had dinner with one of them last month and we talked about a lot and about nothing. There is a certain unwritten respect and love there. On Wed I have lunch with one of the other wives ( by the way,I call the wives my cousins too because I love them so much) and we just laughed and got caught up. It’s like an old friend, but better because you know the force behind it. FB has also connected me with more of the extended family and I know my Pop is smiling down. When I was a kid and we got together with family, he always cried with happiness. What a mushball he was, particularly when he saw his brothers and sisters. I’m a sap too when it comes to family, must be a Henschel thing!

My sister in law gets it. She so damn easy to get along with and fun. She just doesn’t get her feathers ruffled. She willingly and lovingly takes the boys overnight and embraces Bryan’s wake ups at 5 am with love and bagels!! She and her kids moved down a few years ago after a divorce and we try to help each other out. No nonsense, no BS, just make it easier for each other, period.  It is great that she and Erwin have such a good relationship. They rely on each other and know that the other one is always there. Erwin is the most loyal person you will ever know. He would literally do anything for anyone that means something to him. He is the perfect father of a special needs father. He does not say why us? He says, this is my boy and I love him Bryan hit the jackpot with this one!!

Why am I writing about this? It’s not the usual venting but yet still I feel this need to share and to put these warm thoughts down. This good stuff will go out the window quick, so I have to catch while I can.