Holes in what’s left of my reason…

holes in the knees of my blues. odds against me been increasin’, but I’ll pull through. Back to lyrics.

Typically if I have not blogged in a while it can only mean one of two things. Everything is so fabulous I have nothing to share, I am just happy as can be and why would I  need or want to blog. Or things are so screwed up and my thoughts are so scrambled I cannot get them out to blog. Guess which way I’m headed….In reality there are a lot of good things going on but it just seems that the older I get the harder it is to juggle everything at the same time.

We are planning Bryan’s Bar Mitzvah. I say this with joy, pride and triumph. This event will be a great day for him and for us as a family. Bryan is engaged and excited about this and well that makes it all worthwhile. How the day will actually turn out remains to be seen, but if love and good wishes can make something good happen, it will be fantastic. Like all milestones there is a tremendous amount of planning involved. I call this “happy busy” and embrace it wholeheartedly. However, on top of my full workload at work, managing the kids day to day activities, laundry, lunches, etc. I am spent. Don’t get me wrong Earl is a great partner, but when there is sooooo much to do, it still can be truly overwhelming. As I’m reading what I’m writing I am thinking, why am I so frazzled, things don’t sound so bad.

I guess at the end of the day it points to the toll that autism can take on you personally and as a family. I woke up at 4:50 today to do a Jillian Michaels DVD, week 5. Damn she’s tough. Bryan woke up with me. For the entire 30 mins of this DVD he was repeating, I can go to school, what time, you made my lunch, what time do I go to football tomorrow? So much for my zen 30 mins. This is what we have all day every day. Constant perseveration and anxiety. He does not sleep past 5 hardly ever, even with some meds prescribed by the shrink to help him sleep on weekends. The tough part is he is sweet and gentle now, he really doesn’t hurt very much anymore and he is more compliant. But… it’s like anything else in your life, small doses can be tolerated but the constant poking of words can drive you crazy. It also sucks because to some extent Bryan can control himself and to some extent he can’t. I love and adore this boy but at times I truly cannot take it. He knows this too and of course that makes it all much worse.

This weekend is Jason’s birthday. He is 10. How did that happen?  I took Bryan to get him a present. So funny, Bryan keeps telling him, hey Jason I got you a lego set for your birthday!!! I have told Jason I got him a Barbie dream house just to bug him. Happy Friday.


			

Is there a doctor in the house?

We have a lot of lawyers in the family. Mostly that’s good. I still remember my oldest cousin on the phone with me right before I left for law school. He said, “you don’t want to do this, it’s nuts. They have this thing called the “rule against perpetuities” and no one gets it.” So funny the things we recall from younger days.

Jason would make a great doctor. He has so much compassion. He is also very responsible in interesting ways. Both Bryan and Jason get growth hormone injections each night. Jason has pituitary hypoplasia (1/2 a pituitary gland) and growth hormone deficiency. Why should Bryan have all the fun with autism??? And Bryan has idiopathic short stature, just stopped growing at age 5, no real reason why. So they know all about their shots each night and each got shots at camp so they definitely had to be clued on in the process. Jason has completely taken over this process. He not only mixes the medicine in the injection pens they go into, but he uses the alcohol pads, loads the needles, and has started giving the shots to both him and Bryan. Bryan has been getting in on this too. In fact he gave himself a shot the other night. I’m kvelling, two doctors? A jewish mother’s dream come true.

On the other hand, I probably need a doctor. I was a shrew all weekend and not sure why. For some reason all of Bryan’s perseverating was driving me up a wall. I can usually cope with this fairly well, the operative word being fairly, but I seriously lost it on him yesterday. Screamed full throttle. The worst part, other than the fact that it’s completely fucked up to scream at your kid with autism for having autism, is that he looks at me so lost. Like, mommy, what can I do, I want you to be happy with me. Earl took Bryan with him to Publix to get him out my way. I sat on the couch and cried. Jason was working on a project for school after I threatened him. His project is due on Wednesday, why does he always have to wait until we kick his butt to do it or it’s the last minute? I am trying to teach him better time management. After some threats he and I worked on it and I started to relax a little. The tears came and my Doogie Houser took over. He was consoling me. Oh that is so wrong. I cried for being a crabby mommy and not having patience with him or Bryan. Dr. Jason told me “it’s ok Mom, you’re still the best mommy in the world.” Barf. I cannot accept anything like this. He hugged me and kissed me and we worked on his project more. When Earl and Bryan got home I was better, more relaxed, more in control. The doctors did their shots and I took Bryan up to bed. I tried my best to explain to him that I was not angry with him but that I was angry with myself for not having more patience. He definitely seemed unsure how to act with me. I told him I loved him and that I was sorry. He accepts the apology easily and snuggles with me. Oh how I don’t deserve that. Today is a new day and a new year on the jewish calendar. I am going to have to starve next week on Yom Kippur!

You won’t like me when I’m angry!

Here’s the deal, no sugar coating, no BS. When you are the parent of a special needs child you better own it. You need to know what your kids strengths and weaknesses are and you need to be real with yourself and those that interact with your kid. What does that mean? It means when the school calls or your kid’s teacher calls you need to listen and breathe. Don’t pretend like little Johnny is always perfect. Bryan has some tremendous strengths but he also has weaknesses, just like all of us. Earl and I went to a meeting last week at Bryan’s new school. The purpose of the meeting was to grant permission to the school psychologist to do a state required re-assessment of Bryan from a psychological perspective. Let me translate this for those of you who are novices. This is an exercise in futility. We can seriously tell you exactly where he is in most things and kids on the spectrum typically test horribly.  Perhaps we do not know the grade level for things, but for a lot of stuff, we know enough to provide direction on treatments needed. So we went, because we are always hopeful. Not to be too negative but if you think your typical child has trouble with standardized tests, just imagine how your kid who has limited vocabulary and limited language will do. Couple that with a lack of focus and you have a disaster in the making. I sincerely suggest when you get the results of any of these tests you open them up at a bar with a tequila shot at the ready. The last time we got the results back, after a private psych eval, I cried a whole day away. Good thing we paid $3000 for that.  The good news is after the crying ends, the parenting kicks in. These results, while heart wrenching at the time, always forces us to rethink what we are doing with him and for him and although a change is not a direct result of the report; the impact that it leaves on us usually fosters some change. In any event, at the meeting we had the school psychologist, his teacher, speech teacher, OT and the school coordinator for special needs students. We all talked about how Bryan was doing so far, week 3, etc. Everyone was saying what a happy boy he is and how he is adjusting well. Don’t mess with me, this is middle school. We have been doing these meetings for 8 years. I know in my gut if he is so happy with this transition it’s one of a few things:

1. He is not being challenged and therefore likes going because it’s easy

2. They haven’t  given him enough rules to make him feel too anxious yet.

3. The bad stuff is coming.

4.  He has pretty much recovered from autism and the meeting is a waste of time anyway. Ok so that’s not funny.

So….  we went to open school night. Teacher did her thing, other parents did not interact!!? WTF? Usually parents of special needs kids bond and cling to each other like they they are on the Titanic watching the last life boat leave.  Very curious.  We left feeling weird and unsettled. I know for me, when my mommy radar goes off, the missiles will not be far behind. Yep, we got a  hit, got the call yesterday. Apparently the boy who is adjusting perfectly is not. He is calling out in class all day long and one of the other kids cannot tolerate it.  The kid has pinched Bryan and possibly hit him too. Not tough to imagine because he does this all the time. However, Bryan is an extremely reasonable and motivated boy. This can be managed with a behavior chart, a little incentive from both the teachers and mom and dad. We are now on lockdown and will get this puppy cleared up soon. We expressed that we need more info from the teacher. Turns out we were supposed to be getting home notes. Gee, just what we had asked for initially. come on… throw me a bone here people.

Good news is he gets what he is doing is wrong. We have both spoken to him and the light in his eyes let’s us know he understands this. He needs motivation to control this behavior and we know just the buttons to push.

And they called it puppy love…

There is truly nothing more delicious than puppy love. Our new puppy Ranger has been snuggly and delicious and a warm addition to our family. Our other pets seem to be adjusting slowly but they can enjoy their time now before he gets bigger than both of them put together.

On Saturday Bryan got back to his pre summer schedule. He has his social group with an adorable 12 year old girl and they work on conversations, etc. Then he has OT to work on handwriting, holding silverware, etc. He loves his speech and OT therapists and can’t get there fast enough.When he saw Danielle, the girl in the group, he went over, gave her a hug and said “I missed you so much”. After we got home he got changed to go to Football Buddies. He asked me to take him and I did. We got there pretty close to starting time and had to park a good distance from the field. Bryan is the same height as me now and we walked to the field with our arms around each other. Oh the sweetness!!! At two points he stopped and looked at me and gave me the most loving, engaging look. It was a moment of pure connection. I LIVE for these moments. To me, all is right with the world. Nothing else matters. Just a boy with his mom going to a football game. Pure and simple. We got to the field and his 2 buddies came over and took him off to play. In the early years he would cry and scream at football. It is very hot and he just didn’t like it. Now he goes, comes by to get a water break and an occasional trip the bathroom. At these moments I remind myself to pay attention to the growth, the maturity, don’t let it slip by unnoticed. A good reminder that just because things don’t happen as quickly as they do for typical kids, they can still happen.I sit on the sidelines with other parents that I know fairly well and some not so much. It is an hour of relaxation for me, when it used to be an hour of angst.

Late yesterday I needed to go food shopping. Yes I say food shopping, not grocery shopping, not sure why. Bryan loves to go to Publix with me; he always wants gum or to look at the DVDs. Sometimes these shopping trips can be torture. But, again, like many things with him, there is a budding maturity. He went with me and I am happy to report it was uneventful. We bought groceries, I got him some sugarless gum, and we drove home. Who am I? I’m just a mommy in love!!!

Digging to China

You know when you were a kid and you were at the beach and you were digging a hole in the sand and your folks used to tell you that you could dig to China? Not sure what that was about but you knew that meant you were digging deep. Well this past weekend I was digging to China looking for my deepest mommy patience gene.

I just wish for one weekend parents of typical children could spend it with a child with autism. You would not believe the challenges. I know typical kids have issues, I have one of those too, but it is not the same and I can say this from first hand experience. I’m not looking for pity, just trying to vent. And, for the record, Bryan is great. He is verbal and loving and sweet. He is self-sufficient in many ways. But….the thing is you can see improvements, but some things get better as they get older and some get more difficult. Or perhaps expectations change. When he seems to be doing so much better in some ways, the old stuff can be even more frustrating. Bryan, literally, must have said, “I go to school on Tuesday, what time do I go to school?” about every 30 seconds since Friday night. I am working on myself. I am trying to exercise more, eat less, and get mentally and physically fit. The challenge not to get angry with him or frustrated with him is a billion times harder than any other personal challenge. It takes all of your strength, love, discipline not to go postal. In your head you are saying, geez shut the hell up. Even in my head I am guilty. He is also happy he went to camp and is excited to go back, but does not want to go now. He says, ” I can go back to LeeMar, in 10 months.” It is particularly tough when he does not have a structured weekend. We get it, it would be better for him to have a completely structured day, but it is not realistic to have structured plans all weekend every weekend. This weekend we got our new puppy, Ranger. So delishy. We needed to be around to get the puppy familiar with his surroundings. A perfect storm. Bryan, while much calmer in some ways than he used to be, was filled with anxiety, ocd and could not stop repeating. I felt and feel at times, like I might go insane if I hear him say these things again. But I must dig deep, try not to react emotionally, try to use logic. Even when we took him to the movies yesterday, I sat on the end, then Earl, then Bryan then Jason, he leaned over Earl a few times and talked about school again. Not only is it the nonstop repeating that can rip at you, but the angst you feel as a parent knowing that your kid is suffering. The expression on his face is so tense. I started doing Jillian Michael’s Revolution. It’s an exercise plan for 12 weeks. In the videos, which are 30 mins long, she says “if you have a “why” then you can endure any “how”. How true, but 30 mins of exercise is not the same. As she says, you can endure anything for 30 mins if you have a why. Deep breaths.

Tonight Earl is taking Jason to a Marlins game with my nephew and my sister in law’s boyfriend. A good break for them. I am going to enjoy the respite of my office and work. A different focus. I am going to get out the biggest shovel I can find.