Friday, July 13, 2012

It was Easy!

It's been a big week here!  Just the other day I wrote about Daniel's progress with his biggest fear.  Then yesterday came along and I thought, which one is Daniel's biggest fear?  I can't say for him, but let's say if he was in the book Divergent these two things would be in his fear simulation! (I love that book!) 

Yesterday we went to the pediatrician.  Daniel has fallen into a pretty decent routine there, mostly because they have been very accommodating and let him opt out of the dreaded finger poke and frankly, all of his shots for the past 12, yes 12 years.  When we were in the office yesterday and the nurse looked back to his last vaccinations and I heard his last one was in the year 2000, I just thought, of course it was!  I hadn't thought much about it, but there it was in front of me 2000.

So many things happened in the year 2000.  Besides the obviously new century and all, my wonderful son Zach was born in January.  That was a fantastic way to start a new year and century.  Later that year, we moved back to East Lansing.  No small thing with a newborn and a 3 year old who was very perplexing and spent a lot of his time screaming and crying, much to my confusion.  I was excited to move back to East Lansing and get back to our original pediatrician, the one we had after Daniel was born.  I wasn't getting any answers from our Dr's in the Detroit area and I was frustrated.  I had a new baby and I was finally ready to "hear" the answers.  So yes, when we got back here, our pediatrician was the first (and it's unusual for this to happen) to say "he's autistic".  With all of the changes that were happening, during this first visit Daniel screamed the ENTIRE time he was in the office.  It was a huge change that at the time, I had no understanding how upsetting that would be for him. I didn't understand (yet) how big of a problem that change would be for him.   I hadn't put together until yesterday that he had never gotten a shot in THIS office.  That first trip to the pediatrician screaming set a long standing precedent.  Which brings me back to the fact that he has not gotten a vaccination in 12 years.  That is NOT because of the vaccination groups who say it is what causes autism.  I take the same stand as A Diary of a Mom, when I say, while I have nothing but respect for those who think this caused their child's autism. They have every right to their own feelings.  Nor can I have any say in THEIR journey.  We have all traveled down different paths.  Every single child with autism is different.  I know of a few people that I have heard their stories personally that it does seem like a vaccination contributed.  In my opinion, there are many different factors that contribute to autism. 

There, I got THAT out of the way.  BUT I will say that if I had a baby today....I would choose to vaccinate, but carefully.  And by that I mean, one vaccination at a time.  I would not allow three or four at a time.  Ever.  I have learned along parenting journey that we as parents have the last say about everything and one of the people who taught me that is our pediatrician.  I adore him.  We have had very intelligent conversations about vaccines.  He has not been comfortable with Daniel being so far behind, and really, neither have my husband and I.  But I remember one talk with my pediatrician and I said, "I am not against it, we just can't do it now.  If we hold him down and inject him, he will never come in your office again.  He may destroy it in a fit, and if he has an ear infection he won't trust us.  Ever. Again".  And he understood that.  We both agreed him having access to medical care was more important at the time than a vaccine.  He respected my opinion and for that I will always be grateful.   Not all kids with autism are the same (I'll say it again) this is just DANIEL.  So I waited.  I waited until I felt he was ready.  I waited for him to understand.  And over the last year I have seen things change.  We got a puppy and I told Daniel the PUPPY got vaccinations.  Daniel was shocked.  He said "Oscar did?".  I took every opportunity to have a calm discussion.  Usually it would end with Daniel saying "I will NOT get a shot".  But I could see his wheels turning. 

People will tell you they HAVE to have these shots for school.  It is not true.  You can get around it.  I have.  For years, and it's not that difficult. 

This all prefaces that yesterday my boys had pediatrician well visits.  I purposely scheduled them together.  At the same time.  This was a bit overwhelming.  I am becoming less successful at juggling many things at once, so trying to talk to the nurse, fill out paperwork, help Daniel answer questions, and keep him calm and trying to give equal attention to Zachary was challenging for me.  I do feel a bit guilty that I was exposing Zachary to yet another challenging situation and using him as a guinea pig.  But I have to say, I couldn't have done it without him.  I hope he understands.  I hope he doesn't hold it against me. 

I walked into the appointment and told the nurse we were going to try to give Daniel one vaccination today. I won't go into detail but there was some back and forth with the nurse.  She doesn't know him.  I do.   I have mastered the art of conveying this in a polite yet firm way.  I know how to work Daniel.  I told Daniel before we left our house he was getting a vaccine.  This spiked his distress. But I have to be up front with him.  He has to trust me about all else.  He began protesting.  Yelling.  I will probably get judged for this, but I gave him a Valium.  I had one left.  Our Dr. gave me two back when Daniel needed a tooth pulled.  I used one then and kept the other for a special occasion.  That being yesterday.  I could tell as we were walking in to the office it kicked in.  He got giggly and started singing.  Zachary smiled at me.  But before you judge, the Valium relieved DANIEL's stress level.  It helped make him not so terrified.  Not completely, but it took the edge off a little bit.  He was still mad at me and protesting.  But it was manageable.  When it came down to it and to make a very long story (shorter) Zachary got a vaccination first.  I pulled Daniel over to watch it.  The nurse said to Zach "think of a happy place".  and in an animated voice, totally for Daniel's benefit Zachary said, "I'm going to think of the beach, it is my happy place, I love the water it is so relaxing" (GOD I LOVE THAT KID!) and the nurse stuck him and Daniel said "that's it?".  Zachary said, "that's it, it is SO EASY!!!!!"  

The nurse left the room and Daniel sat down.  She brought in another tray.  We decided on the Meningococcal vaccine because 1. it's required. and 2. it doesn't hurt for days like tetanus does. and 3. the MMR still scares me as he is allergic to eggs.  Daniel figured it out immediately and started escalating (keep in mind he is 6'1" and 219 pounds.  A tantrum is HARD to deal with!)  I walked up to him and trying to get him to hear me over the "nononononononononononono" yelling from him.  He came down enough and I said, "what is your happy place?" he answered "the circus (?)" He continued to protest and I said we were doing it.  I was sure he could.  We started taking about the circus, I was holding his arms firmly but not pinned.  The nurse was worried about him grabbing her and I don't blame her.  Daniel upset can be SCARY due to his size.  I told him she was wiping his skin and he was upset and boom. It was over. 

He said.  "That's all?  That was so easy."  And here he is. 

All he said all day.  "it was so easy!"  I know my child.  I knew he was ready.  I also knew that once he did one, he would calm down and realize it wasn't what he thought it was.  I knew that it had to be done in a not so traumatic circumstance so he could process it and not remember the trauma around it.  So yet another door is opened.  Nancy our nurse was fabulous.  She offered that if we come into walk in immunization times to ask for her and she would help.  She followed my lead and respected what I knew would work.  Now Daniel is a little more protected then yesterday which makes me feel good.  He also has learned a bit more.  He learned that he could do it.  He learned again, most importantly, that I was not misleading him.  That what I said was absolutely true.  That his brother is there for him, always.  That we can guide him through a difficult time and he can trust us and rely on us.  That even though it wasn't easy.  It will (probably) be from now on.  He learned that his could do it, and that opens up the door to so many other things.  Next to that Belle Tire guy, he conquered his next most overwhelming fear. 

Last night we went out for ice cream (which I promised him after he did it) and we clinked our ice cream together in celebration of a job well done.  

Wednesday, July 11, 2012

An (In)Ordinary Summer Day

Happy July!  The summer is flying by like it always does! I feel like we are in our routine. We are continuing with swimming club and started the second session. The days of summer are feeling like our ordinary day.

We'll be missing a week of swimming as we head back "up north" for a week, but I am compensating by Daniel swimming 4 days for the three weeks he is swimming instead of 3 days a week.  He was VERY unhappy with me about this, but is doing it.  I believe I heard him muttering something about "dumb" under his breath which I pretended to NOT hear.  This has been happening more and more and it is very difficult for me not to smile as he is basically calling me dumb or stupid (which in his vocabulary is a VERY bad word to say, the worst he has in his repertoire).  The reason it makes me happy is because it is NORMAL for a teenager to think their parents are stupid!  Only the parent of a special needs child is thrilled to see their kids cheat at a game the first time or call us stupid.   It's PROGRESS!!!  Normally I'll act offended and tell him that is NOT OK and make him apologize all while thinking "hurray"!!  I have to stick to the script! 

Yesterday Daniel went to swimming, Zach is in Jr. Lifeguard and loving it.  What else is better for a 100% rule follower than Jr Lifeguard?  He gets to blow a whistle at people and tell them to follow the RULES!  And people have to listen.  Plus he gets to swim, and learn to save people.  That all has little brother Zach written all OVER it.  He is still wearing his whistle, 3 hours after class.  Oh boy.  He did tell me that he can work at the pool when he is 14, in two years.  Not as a lifeguard, but doing other things.  I think you have to be 16 to lifeguard and be certified etc.  Of course he will be by then. He is formulating his plan.  I love that kid.

In the afternoon we were lucky enough to get in for haircuts, which were desperately needed.  Haircuts used to be so traumatic for all of us.  Daniel would cry and scream and fight.  I would do it at home and it would take hours.  Sometimes Todd would hold him down and we'd buzz him.  It was awful.  But he also HATED his hair long, he didn't like when it would blow in the wind almost like it hurt his scalp.  Damned if you do, damned if you don't.  I don't remember how old he was when my friend and hairdresser Kari suggested she try.  She was magical with him.  It wasn't perfect in the beginning, but over time he trusted her, and she even got to where she uses the clippers to clean up the bottom and sides.  Now I get to go in and watch him chat with her, script his haircutting script from Elmo's World and it is so easy.  I never thought it would be easy.  She was a savior.  Shhhh, don't tell her, but I'd pay her A LOT more money than I do, just so I don't have to do it! 

On the way out of haircuts I took a different route because we were meeting my husband for dinner.  A few blocks from the salon I remembered this route took us past the new Belle Tire store.  I have many links to the nightmare that this little logo has brought to us.  We were driving along and Daniel said, "when we get to the store of the tire guy, I will duck my head and close my eyes and smile" (a reference to the Veggie Tales song "God is Bigger than the Boogie man")  I froze.  He has never referred to this without being in a panic or covering his ears.  He just said it like he was talking about ice cream.  From the backseat Zach said "WHAT did you just say?" hardly believing it himself.  Then Daniel covered his ears.  I then launched into my speech (delivered in the most light hearted voice I could) "you don't have to be afraid, it's a LOGO Daniel.  A LOGO.  It cannot hurt you."  My same speech I've been giving for years and years.  But he is reacting less and less to it.  It is obviously working.  He said "the tire guy" without reacting.  He is avoiding him on his own.  I'm not changing my route to avoid passing the store.  It's working.  Slowly, yes.  What isn't slow with us?  But it's working.  We take and celebrate ALL progress.  This is opening his world a tiny bit more.

Then we went to Bed Bath and Beyond.  Daniel has a laundry hamper from when he was about 6.  It is in the shape of a rocket because his room was, and still is, space themed.  He went through a space phase.  Had I known then that I would NEVER be allowed to change his room, I might have done a few things differently.  Live and learn, right?  Well this laundry hamper is one huge mess.  There are wires sticking out all over and it is just destroyed.  I finally said, "that's it, we need a new one." He asked "is it tattered and worn?" (from Sesame Street, "I love Trash" song) and I said (according to script) "it is and we need a new one." He has learned to accept this.  It used to be a HUGE fight.  So we were looking for a laundry hamper and we were in the bed area on the way to the bath area. Daniel said excitedly, "LOOK A PURPLE PILLOW!".  There was a bed with a purple pillow on it that you use to sit up in bed to read or whatever.  I jokingly said, "Daniel is it time to change your room, we could use purple."  I say jokingly, because I didn't think there was a chance in hell he'd let me change his entire room!  And he said "YES, let's change my room and get rid of my rockets on the wall and paint over them!".  I almost fell over onto the floor of Bed Bath and Beyond.   He ASKED for a CHANGE in the most important place in our house to him.  a. He ASKED (in his own way) and b. he is ready for a change and somewhat communicated it to me.  So now, in the middle of summer, I am trying to design a new room for him that is masculine, and has purple and of course he wants it done now.  Not a project I was planning on, in the middle of our busy summer, but one I'm thrilled to do.  But I'm going to make thoughtful choices.  After all, he might not ever let me change it again. 

It's these little moments of progress in the middle of an ordinary day that make you feel that all of the hard work matters. It gives you a moment of celebration.  It gives you something to hold onto when things aren't going well.  It keeps us moving forward.