Solving the Puzzle

The puzzle piece has been established as the symbol for autism awareness.  Organizations talk about solving the puzzle of autism. I find this somewhat ironic since Bryan always loved to do puzzles when he was young. Most of us  look at the picture of the puzzle on the box, start with the frame, and work inside. Bryan never looked at the box, he always looked at the pieces. He put pieces together by color, shape, not to make the picture. You’d think this behavior would’ve given me a clue, nope, I just thought he was good at puzzles.

There are many pieces to the puzzle of autism and some of the hugest pieces are the people who you “hire” to work with your child. I put this in quotes because although this is a business arrangement, the arrangement feels nothing like business. Working with tutors, therapists, etc is very personal. Often times these people come to your homes; they see your piled up laundry, the mail we haven’t opened, and our messy lives. They know our good times and bad, and take the journey with us, week by week. They give us their guidance, their professional thoughts, but more than that they give of themselves and reach our boy in a way we cannot. We are really fortunate to have great people to work with Bryan. Here is an example. Yesterday Bryan was having a tough time. He was upset and was getting physical with our babysitter and Jason. Apparently it escalated and everyone was pretty upset and spent. Our Hebrew tutor came over to have her Monday session with Bryan. She took him upstairs, tried to play Wii with him, he then went to his room, lied down and wanted to do some Playstation to calm down. He asked her for a tissue for his eyes. After a little while they did their best to get some Hebrew review done. She called me after she left the house. She told me how things went and gave me some info she felt I needed. Here is the great part. She was proud of him and told me how he talked himself down, about his good language, and about how he was doing better. Can you imagine someone doing this? Taking the time and energy to work with your child to get him to calm down where he could learn, then recognizing that through all of this angst, positive behavior prevailed. I didn’t react too much since I was at work, but truthfully I was floored. The intimacy, the love, the dedication, it’s hard to process at times. The relationships we have with Bryan’s peeps(shorthand for everyone who works with him) are like pieces in a puzzle. Each one has their unique spot in our lives and each one has a place.

Break on through to the other side

It’s hard to describe certain feelings. Some interesting things are happening. Bryan’s language seems to be coming along. We are noticing a lot more complete sentences, some new expressive language, and some questions. Hmm. I have also noticed lately a lot more meaningful eye contact. He holds the eye contact much longer, so he’s not just looking at me to talk but he’s gauging a response. If your kid has autism, you hold these glimmers of typical behavior close to your heart. They sometimes don’t last. At times they come and go and sometimes they are here for good. You just don’t know so you must savor them. A few weeks ago he seemed so out of focus, drifting along, and now he seems with the program. Ask me to explain it and I cannot. However it comes and goes, we are grateful.

Bryan is on the cusp of so much grown up stuff; sleepaway camp for 7 weeks, middle school, Bar Mitzvah. I forget sometimes how old he is;  it is one of the crazy things about autism. The kids grow up in slow motion when it comes to speech and language, but physically he is a big boy. One of the challenges when your child does not talk in an age appropriate way is that it is easy to think he doesn’t understand what you are saying. Bryan understands every word we say and we know this because at times he will say something so revealing that it stops us cold. His comments are always met with happiness to hear his thoughts, yet fear that he may have heard something that might make him feel bad. I see a lot of parents who talk about their child like he or she is not there. They are there, and they know all. It’s a lesson that needs to be learned and re-learned daily.

The breakthroughs that Bryan experiences and we comment on filter through our marriage too. Earl spent about 30 mins at lunchtime today talking Bryan through the tuna fish he made. Bryan loves plain tuna fish. Earl made it with carrots, red pepper and corn to try to get some veggies in him. Bryan did not want to eat it but Earl was so patient and calm and encouraging, he gave in, tried, and loved it. I could never do this; but Earl was able to reach him and then Bryan was very proud of himself for trying food for a big boy, eating it, and earning his dad’s approval.

As a married couple our communication skills have improved dramatically too. We have a lot to discuss all of the time and we need to be able to respect the other person’s opinion and not discount another point of view. The sheer determination to help our son has put the focus on being happy rather than being “right”. So simple yet so tough.

Division of Labor

I know who I am. I am not the most creative Mom; I am not good at teaching lessons,  creating cool games, or making math fun. We have a trampoline and I do go on that with them! I do homework with the boys, but any sort of creative posters, dioramas, etc., that goes to Earl. He is so creative, so good at taking an assignment with the boys and bringing it to life. I don’t cook, although Jason says I make good chicken nuggets. I do ok with breakfast and I make a good sandwich!!  Some moms make really well-balanced creative meals, not me. I always feel so bad when I hear about other moms who home school or redo the kids lessons with them. I love to read with the boys, and try to go over Bryan’s speech materials, but that’s about it. I do a lot of laundry, but admittedly,  I am not great at folding…

I do have some strengths however and I think this is why I have the kids that I have. I am pushy, yet polite, and I am extremely action oriented.  Don’t mess with me if you have something I need for my kid and you’re holding it back. I am good at researching treatments, doctors, programs and following up. I know exactly what has gone on with each of the boys, meds, treatments, programs and I will take you down if you don’t give me what I need for my fellas. I am fair-minded, though, and try to take the info from where it’s coming and digest it accordingly. I am also super affectionate and feel compelled to kiss and hug my boys multiple times each day whether they like it or not. I am also good at making sure they are super clean; they shower each day and I am particularly tough on the hair situation. To me there is nothing more vile than going to hug a kid and smell dirty hair, yuck!

Why am I talking about this, why does anyone need to know this? I am thinking about this so much as I talk to other parents about middle school. In order to evaluate where Bryan is going, we need to think about what we do for him and with him. I am reflecting on my skills so I can make sure I am realistic, honest and working with Earl in a pure way to get him to the best place he can be, not doing what may be best for us or Jason. We need to make sure we are doing what is best for him, no matter what. But  advocacy is only part of it. That is my strength. This morning Bryan was coughing a lot. He has a residual cough from his cold last week. Bryan has an easy puke trigger and the coughing led to vomiting which also led to crying and a headache and not wanting to go to school. Earl handles this much better than me and luckily for everyone he takes them to school. We have a rhythmic division of labor in our house. Somehow they seem to get over things much quicker with him than me. Must be the deep voice.

State of Confusion

Florida is a horrible state for autism. Yep, it’s true. When we moved here and Bryan was 4 it was insane the amount of calls, research, meetings it took just to figure out where he could attend Pre-k. So why did we move here and why do we stay? These are excellent questions. We moved here for two reasons. One was that Earl had an opportunity to expand his business in a way that was not available in NY. Also, all of our family was here at that time or moved here since that time. When we moved we were just getting started with all of the therapy, etc and trying to get a grasp on Pervasive Developmental Disorder. Jason had growth issues, allergies, etc, and we were going to so many doctors appts for both of them I could no longer sustain my current work pace. I took a year off when we first moved and although for me being a stay at home Mom was a little like Groundhog Day, the boys needed me and we needed them to be ok.

As time went on and we learned how to navigate down here, we learned that once your kid is 3,  services are no longer provided for free (meaning you pay your taxes) unless you have insurance (in those years insurance for OT, speech past a few sessions, was unheard of) or pay for it privately. Hmm, he needs speech at $90/hour plus OT at $90/hr about 3 times per week, and ABA at $90/hr twice a week. You do the math…. We were lucky to have some insurance help and tons of family help. Since I started working my company has been fantastic with support.

Our philosophy has always been to treat Bryan as much like a typical boy as possible. Please don’t confuse this with our denial of the disorder or trying to make him something he is not. The key is to help them function and fit into society. They have no other choice, really.  How do you expect your child to navigate  a restaurant, mall, supermarket if you never take him? How do you expect him to relate to people if he is hidden at home? Not be shallow but the kids also need to dress the part. Your special needs kid needs to look like a typical kid. Just because they don’t whine or ask for the latest trends, if you want them to fit in socially, you have to take this into account too. It may sound silly, but the kid needs every advantage they can get. So,  Bryan goes and does all things, all family functions, etc.

Our family is so accepting of him. There are no real scripts to tell people how to act with him. Geez, half the time we don’t know, but love, that always comes through. Kids know who love them and whose feelings are genuine. Bryan knows that the family loves and cares about him. He loves being with them too.  A few years ago when we went to Disneyworld with my parents and sister, he would put my hand in my mom’s hand and say “all together”. Bryan turned 12 on Saturday. He was well aware that it was his birthday and wanted presents!!! We had a family brunch on Sunday for him. Nothing swanky, just bagels, cake and love. He was very happy and everyone showed him warmth and respect. No one treated him like a baby or like there was anything  different about him. One of the most loving parts of the day was watching the other kids, his cousins, interact with him. My niece and nephews just naturally talk with him and play Wii with him. My older nephew sat with him and worked on one of the Lego sets he got for his birthday. My cousin Ben’s daughter, who does not know him as well as my niece or nephews,  engaged with him by going on the trampoline with him and playing Wii. They are the same age; they connected. They walked up our stairs holding hands. Ahh, so that is why we are here. The love, the acceptance, the support. You cannot make a kid be kind to another kid, even if it’s your family. They have to feel it, get it. And this stems from the parents. Our family encourages their kids to be accepting, to be loving and we appreciate that more than words can express here. The attitude of the other kids, the encouragement, you can’t fake it and trust me, he knows that.

As far as school goes, we do our homework and we find the best available down here. We supplement his schooling with tutoring and therapy. Better school programs might be available elsewhere, but the intangibles, they are here and we are staying. The weather’s great too!!

TKO

Last night I got a message from a friend that she had met with her son’s school psychologist to go over his evaluation. It’s a goddamn nightmare if your kid has autism. You feel like Joe Frazier staring down a Muhammad Ali right hook and there’s no where to duck. She was distraught…

If you have a kid with autism you are subject to these lovely evals periodically by the school psychologist. Don’t be a schmuck and do this privately. They tell you that their psychologists are experts in getting info out of our kids so the eval will be “better”, “more accurate”. Typically, however, the tester is just a PhD candidate trying to finish their thesis while testing your kid. We had one about 2 years ago, privately, yes we paid about $3000 for this; Bryan was 9, they told us his language was that of a 5-year-old. WOW. Time for me to retreat to that little dark place called Mommy Hell.

Here is the thing: We know that we need to have these evals done. They are important to get us moving. We know that we need to hear it straight, but it seriously is like going 5 rounds with the champ. He may never live on his own, bam, he can’t do simple things like tie a shoe, bam bam, he is very immature and has serious behavioral challenges. TKO. Where does one go from here? For many other moms I know and for me, we take it so personally. There must be something I am not doing. I am a bad mom, I am deficient, it cuts you to the core. It is excruciating to try to make some sort of peace between being the kids mom and being his therapist, teacher, SLP, OT, tutor, etc. All parents have trouble hearing negative things about their child; I feel the difference is that because autism is so gray, and treatment so uncertain, there are no real roadmaps to help you help your child. You are the quarterback without a playbook, it’s 3rd and 10 with a minute on the clock. If you miss the receiver, game over. If you score, well you are a hero. Ok, don’t want to beat the analogy to death.

So what do you do after a psych eval? Short term: tequila, xanax, etc. pick your numbing poison. A good cry can help but these are the short-term zone out things that help no one really. For me I need to think, seriously think about what they are saying and what can be done next. Earl and I talk these things through, let it sit for a little while, then work on a plan of action. You might think this would get easier over time, but I find it’s just the opposite. Perhaps it’s because you have already done a lot, tried a lot and feel deflated. When the kids are small you feel like, “oh wow, he’s just a little kid, he will get better, we’ve got time.” Now you’re staring down the teen years and thinking, geez, we are running out of time to make big changes. I thought he would be much farther along by now. That’s the key to it. Each time you have one of these meetings you get knocked down, the stitches of your healing heart are ripped out. Remember how you felt the first time you were in love and that relationship ended? It’s that one, that feeling of despair, hopelessness, and nausea all rolled into one. The real issue is the uncertainty of how all of the things that you do and try will play out for your child.

29 years of a missed Valentine

My Pop, the beloved Victor Henschel, died 29 years ago today on Valentine’s Day. The irony of losing the sweetest grandfather/father on earth is not lost on his grandchildren/children. For years we did not celebrate this day in the usual jovial way, even if it is a made up commercial holiday. For years just hearing the date was way too painful to get happy. However, our Pop would not have been happy with us being sad thinking about him. He was a man who loved life, and loved his family with all that he was worth.

A few memories are really fitting today. When we asked him how he was, he always said “super!”. He was afflicted with severe psoriasis but although this disease was at times unmanageable and debilitating for him, his sunny and bright disposition was never affected. As a grandchild this man represented love in its purest form. He never raised his voice, he always laughed, and told us funny stuff (dirty jokes when we were too young to get them), took us shopping for a treat and made you feel like you were the most special child in the world. Memories of going to a Knick game, sitting near the organ player, and getting a blue sweatshirt with an orange felt basketball stay in my mind.

I used to love when he would see his siblings. He would cry so hard; he never felt emasculated by his emotions. He wrote the greatest birthday cards on 5×7 index cards in all caps. I still have one and it’s kept in my safety deposit box with all of my other valuables.

I share some special memories about my Pop with my cousin Andy. We are only a year apart and we grew up more like brother and sister. He and I went shopping with Pop in both NY and Florida. Pop always kept things even among his grandchildren. Every once in a while you would get a check in the mail and you would know that some other grandchild got something and you were getting your “true up”. Andy and I still talk about those shopping times, particularly the one day where Pop had rented a white camaro, took us shoe shopping, and told us stories about when he dated our Nana. “Priceless” doesn’t even come close.

This man had great expressions for things. Anything that went wrong that was a lesson for you to learn, he said it “built c-h-a-r-a-c-t-e-r”. It wasn’t exactly spelled out by him but more of an emphasis on the wrong syllable to be cute. He used to tell us when we were kids “nicht mit a hent” (don’t know how to spell in Yiddish) which means “not with your hands”, so we wouldn’t hit each other. There are five of us grandkids and when we would get together, it could get a little crazy. I say it to my kids and I know my cousins do too. He said it with warmth, never with anger. I miss him so much. We all do. We all wish he could see us living close together, loving and taking care of each other. And the kids, damn do I wish he could see all of his great grandkids. There just would not be enough tissues for all of the happy tears!

I do like to think he watches over Bryan. Who else would guide such nice people to rescue him in the woods of South Carolina. And Jason…. he has that sweetness, that pure empathy that personified my Pop. Happy Valentine’s Day. XXX

I need a miracle every day.

Last night we got into our car at Ft. Lauderdale airport after 4 days in NY and we hear on the radio “I need a miracle”. Damn straight we do. I need to vent. I need to contact the State Dept. I guarantee Bryan could get any suspected criminal or terrorist to break. Can you spend 4 days with someone who repeats the same things over and over and over and over and not crack? Earl and I did not sleep well and of course that exacerbates all problems and issues.

I am going to break this down into the bad and the good. I must do this in order to scrounge up what is left of my sanity. Oh and by the way, did I mention this was a vacation? WTF.

Bad:

1. Bryan announces “I have a sore throat” on the way to the airport on Thurs morning and then proceeds to get the juiciest cold he has had in at least 3 years.  I am particularly fond of getting coughed at right in my face.

2. Both kids don’t want to go to the Garden to see the Ranger game. Come on, are you kidding me here? Can you say buzz kill?

3. Both kids did not want to go ice skating in Central Park or Bryant Park.  Whatever.

4. We have an interview with the owner of the new camp we are planning to send Bryan to this summer. He does not engage at all with her. She asks if we will cut his hair before camp!!

5. Friday night dinner with my BFF Pammy, her husband, and delicious daughter Olivia; Bryan is sick, coughing, crying, whining. He doesn’t eat. He always eats.

6. We go to the Bar Mitzvah which was the purpose of the sojourn to NY. (this will actually appear in the good section too because there was a lot of good). So Earl and I go through our typical mourning. Our son will not have real friends at his Bar Mitzvah. He does not have the real attachments and relationships that typical kids do. Everyone at the party says, “oh wow, you guys are great” or “he seems pretty good”, “does he go to a regular school?”. People mean well and who the hell knows what to say anyway. I do sincerely appreciate that everyone was trying to relate, but I just want a day off from my life sometimes.  No one did anything wrong, everyone that we know was warm and caring, it’s just hard when your child is the one with the special needs. It’s just hard all of the time and sometimes it’s so in your face.

7. At this point Bryan is big, and he’s really unaware of his body in the universe. He has no sense of spatial relations as it pertains to himself and he bumps into people, gets too close, and steps on people’s feet. Sometimes people are kind and understanding and sometimes not. Sometimes I am kind and understanding and sometimes not. You get the picture.

8. The stares. The stares. The stares.

9. The plane ride home. UGH. By this time we have had 4 days of nonstop nonsense and we are at wit’s end. You would think flying on Jet Blue with the TVs would be enough. Sometimes the headphones make things worse because not only does he repeat, but he does it louder since he can’t hear himself. You can’t make this stuff up!

10. I had a mini meltdown. I heard my sister’s voice after we landed and just sobbed. I don’t want to burden her or anyone with our stuff. I just couldn’t hold the damn any longer.

Good:

1. The Bar Mitzvah! Bryan was so sick on Saturday morning that he was too chilled out to cause a problem during the service. If that isn’t the glass half full, nothing is!! There was also a nice little dusting of snow which kept him distracted.

2. He had some fun at the Bar Mitzvah party. The party was at the new Yankee Stadium Legends suite and it was a fabulous space. My friend who made the party did a phenomenal job; no detail was left undone. Her family, who I’ve known since I am a little girl, was loving and mushy. The room was spacious and we were able to give the boys some freedom.

3. Earl. I am so lucky to have a wonderful husband to share this burden. He and I help each other when one of us is at the breaking point. For ex. on the airplane home I sat between Bryan and Jason for the first hour or so. Earl was across the aisle. I got up to go to the bathroom and asked him to switch for a little while. Bryan was tough and I needed a break to catch my breath. We switched seats for an hour and I watched stupid tv; nothing better to clear the mind. When we loaded up the car with the luggage we laughed about our nutty situation. Laughter is the equalizer.

4. Going home. Bryan was able to decompress by playing Wii and just being in his own space. There is comfort in what is familiar, and that goes for everybody. 

5. The bad always spawns the good. Earl and I realized we need to change some of our behavior so Bryan will change his. We need to energize, push on.