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.  

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. 

Wow, Luther!!!!

Swimming.  It has been a wonderful thing for Daniel.  He has always LOVED the water.  LOVED. THE. WATER.  When he was 6 he started with a Kinesiolgy program at MSU, one on one with a KIN student.  He wouldn't put his face in the water.  But man did he love being in the water.  He needed flotation devises.  Jason, yes I remember his name from 9 years ago, because when someone is that awesome, you remember their name.  He was Daniel's first coach and I was scared out of my freaking mind to hand Daniel over to him outside of that locker room.  Daniel just was potty trained. The autism thing was two years fresh.  Information wasn't available like it is now.  You had to look, really hard.  Life was different.  Jason worked with him, came up with so many "tricks" to get his face in the water.  He finally put it in, briefly, at the end of the semester.  The overwhelming fear was alleviated and he could move on.  Then coach after coach, semester after semester.  We loved some, some we didn't.  We touched their lives and they touched ours.  The slow progression was always there, but it was always slow.  If there is one thing you have to have with a child with autism it is patience.  If you don't keep at something, it will never happen.  You see our kids like their safe world.  Who doesn't?  Our job is to nudge them, lovingly, forward.  Independence and socialization.  That is what we strive for.  If you have those two things you can find a place in the world.  This goes for everyone.  You can be the smartest person in the world but if you can't be a part of it, no one will know. 

That is a big concept.  But within that big concept it is made of up little things.  Little things that all add up to one big thing.  We have to celebrate the little things because they all matter.  Every single one of them.  Sometimes when you accomplish the little things, you know that the big things are possible and sometimes they get you closer to the big goals. 

For Daniel, swimming became something that he could do.  He couldn't (and didn't want to) play soccer, or baseball the way the other kids did.  There is too much going on, too much confusion, too many rules, too much yelling.  Oh and running, too much running :).  With swimming you get in a pool and you swim.  Back and forth.  Repetitive. Back and forth.  Over and over.  This works.  It is also great exercise.  For Daniel, the water is calming.  The exercise is centering.  I can honestly say when he is swimming he is happy.  I'm not guessing at that.  As his high school coach last year said, "He is the only kid I have EVER seen, who smiles while he is swimming".  He comes up for a breath and he is grinning.  Sometimes giggling.  It is contagious. You can't help but root for him.  Swimming made him a part of a team for the first time in his life as a freshman in high school.  It took him until much later before he could do these laps.  It was that gentle nudging over time.  Until suddenly one day he was doing it.  He didn't know that is what we were aiming for.  But I did.  One of the few clear goals, besides independence and socialization was that he would some day be on his high school swim team.  In some capacity.  In Daniel's way.  It might not look like everyone else, but he would do it.  I didn't think it would be freshman year.  But it was.  And it was wonderful.  I look forward to next year.  He swam a lot.  More than ever before. But he didn't always understand the "race" part.  So we worked on that.  Oh....you have to actually TOUCH THE WALL to finish.  It's like I could hear in his mind, 'why? I'm here aren't I?'  He does it his way.  And that is o.k. 

It became clear very quickly that he did not know how to dive or how to do a flip turn.  It's funny how when something amazing is happening I immediately realize what is next.  Like, great, you are on the team, now let's dive.  Let's do a flip turn.  When Daniel doesn't want to do something, he does NOT want to do something.  That fear radiates through him and comes out in yelling "I DON'T! I CAN'T. I WON'T" and YOU CAN'T MAKE me.  He will fight, beg and plead.  So we gently nudge.  We make him try a few things then give him a break.  We have been working on diving.  He still puts his arms out and jumps in.  He can't go in head first.  I get it.  I was scared of that too.  The flip turn?  Forget about it.  His coaches begged him to try to no avail. 

He is participating in Blue Fins swim club right now WITH his brother.  This is huge people.  They are both doing the same activity at the same time with the same people.  While I sit back with my morning coffee and watch. This in and of itself is unheard of.  Did I say huge?  Does it look the same for both of them?  No.  Are they both doing it?  Yes.  And that is awesome.  The exercise is great.  It is a great way to start the day.  One day they worked on flip turns.  By the grace of God, we weren't there.  But there are some much younger kids there and in one day, they were doing flip turns. One freakin' day.  I come the next day and they are doing it.  Did I say after one day?  This has a very small effect on me.  It is just one of many reminders of how much harder things are.  But I do not dwell on that.  I remember that when you do accomplish something it makes it that much sweeter.  Do I wish it was easier?  For sure.  But nothing great usually comes easily does it?  Looking up quotes I found my favorites:

 "Success only comes before work in the dictionary" Vincent Lombardi

"The harder the battle the sweeter the victory" Bob Marley

"We must not allow other people's limited perceptions to define us" - Virginia Satir

I started to think about Daniel as a young boy.  He is 15 now.  I remember bringing him to the park and he got on a ladder to go down a slide.  It was before he was diagnosed.  And he just hung there.  Feet on a rung, hands on one.  Hanging on.  He didn't know what to do.  Other kids just scramble on up.  Parents holding them back to not fall or go to not go too fast, and he stood there.  Not sure what to do next.  I took a foot and moved it up a rung.  Then his hand and moved it up a rung and physically showed him how to climb.  I knew this wasn't "normal".  Why would I need to show him this?  Isn't that natural?  But taking him through the steps, breaking them down tiny step by tiny step, showed him what to do.  So that is the approach we have always taken.  Everything gets broken down into the tiniest steps you couldn't even imagine.  That you never even thought of. 

After the swim club I said "Daniel, did you see all of those little kids doing flip turns?"  "Yes" he answered.  "You can do it if they can."  He didn't say anything, but I planted a seed.  Then my husband and I were having dinner with Daniel. His brother was at baseball practice.  We started talking about doing a somersault in the water.  Not a flip turn.  A somersault. I didn't want to say the trigger panic phrase 'flip turn'.  Because a somersault is what he needs to do first right?  If he can't do that, he can't do a flip turn.  Then we moved onto doing a "Loop de loop".  It is one of his old time favorite computer games "Freddi fish and the case of the missing kelp seeds"  The story is this:  One day, Freddi Fish visits her grandma Grouper and finds out that her treasure chest filled with kelp seeds is gone and her grandma is worry because without it, there will be no kelp in the underwater sea and that would mean no food for the various fishes that live under. Freddi promises to find the treasure and bring it back. Eventually, Freddi encounters her best friend, Luther, who was trying to do loop-de-loops but is not succeeding. He eventually bumps his head on a tree and a green bottle fell down from it, giving a clue to something, perhaps to the treasure chest.....Use what they love to motivate them.  He thinks that computer game is hilarious.  Luther tries and tries while Freddi cheers him on.  Sound familiar? 

So we took this story and applied it to swimming.  It made him smile, ever so slightly and I knew we had him.  I said, "I'll cheer you on Luther if you try the loop-de-loop."  He said, "will you say 'WOW, very impressive Luther" and I promised I would yell it SO loud.  The next day he started trying.  His coach Brianna got in the water.  He wasn't quite going over.  I asked her if she'd get in and flip him over to give his body the feeling. She did.  He was angry.  He was fighting it, he was complaining.  Whenever he is about to embark on something new he goes kicking and screaming. But he kept at it.  I knew it was coming.  He did it with assistance!  I yelled "WOW LUTHER!" and he smiled. 

The next day he was fighting it.  Yelling, complaining.  Then on his own he said to a coach, "hey Cody, want to see me do a somersault?"  He said "sure".  And he did it.  All on his own.  In two days.   When he's ready, he's ready.  And he was ready.  And we all cheered him on.  And it was fabulous.  And he was so proud.  And so was I.  And I cheered for Luther, I mean Daniel.  And he grinned from ear to ear.  It was a good day.  Two days? One year?  Whatever.  The harder the battle, the sweeter the victory.

Now to get him to swim toward a wall, full speed and flip over and push off of it just at the right moment.  Us mom's are always looking forward aren't we?

Band Concert

I am having a hard time starting this blog today. It is only because I have so much going around in my head I don't know where to start.  So I'm starting by saying I don't know where to start..hoping the keys will take me in the right direction.  I guess I'll start with the word START.  Here in Michigan START stands for the STatewise Autism Resources and Training.  It is a huge grant through Grand Valley State University.  I have been to many many START trainings.  It isn't usually parents, but all of those people on your team out there working with your child. I  like to know what they are learning and what they are supposed to be doing, so I go too.  It is also very helpful for me to improve how I parent.  It isn't meant for that, but I have gotten a LOT out of it. 

Last fall I attended a LINKS training.  Here is a bit of an explanation of what it is.  And what it is, is actually a Godsend.  Truly.  It is simple in concept, but not in procedure.  It is also the most win-win in education that I have ever seen.  A truly win-win situation doesn't come up very often.  The kids on the spectrum obviously get a ton out of it, but the amazing thing is so do the General Ed kids who are "linked" up with them.  It is so simple in concept it is genius.  Hearing Maureen Ziegler talk about it in training is mesmerizing.  Truly. Her stories of how LINKS came to be are so interesting I could listen to them ALL day long.  I hope you follow the link (ha ha) and read up a bit.  '

In January Daniel's high school got this program in it's initial stages.  Daniel has 5 LINKS with him every day.  It didn't work out schedule wise for him to have one first hour, but he does 2nd through 6th.  He has a different general ed student with him each hour. They sign up for a LINKS class, do on line work but in place of going to a class they go to DANIEL's class with him.  This does NOT take the place of a para pro.  Repeat, does NOT.  They are there for socializing and modeling.  See, kids listen to kids.  Not adults.  Adults can't act like kids.  They can't teach kids how to be kids.  They especially (we have found) can't model to a kid with ASD how to act like a teenager.  This has been modeled all over our great state with astounding results.  The Gen ed kids get as much or more out of it than the ASD kids.  And the better part? When you start getting kids to be LINKS who are struggling themselves? THEY turn around.  They know they have to come to school because this ASD kid is relying on THEM.  They have a purpose.  Their grades improve.  It isn't just for NHS (National Honors Society) kids.  It's a miracle.

So throughout this semester these LINKS have been with Daniel.  I have heard reports of Daniel branching out and being much more social at school.  He comes home excited about "making friends".  When we went to the musical 3 of his LINKS were cast members.  We went again.  We bought the DVD.  They saw him in the audience and RAN through the crowd to find him and thank him, truly from the bottom of their heart, for coming.  They met with Todd and I at school and asked us questions.  We answered honestly.  We also told them his ability to ask questions has dramatically increased since they have been with him.  It decreases outbursts and behaviors.  If he gets angry he recovers quicker.  It's amazing.  Have I said that?  So this leads me up to last night....

Daniel had a band concert.  He is always excited about dressing up.  He wears a tux.  He thinks he looks pretty darn good....and he does. Daniel is doing well.  I brought him back stage before the concert.  I talked to a student teacher and asked if Daniel would be OK back there on his own and he said, sure no problem.  I dropped him off and went and sat in the auditorium and waited like all of the other parents.  I didn't wait backstage with him.  He's fine, they said, and he was.  Todd, Zachary and I were in the audience waiting for the concert to begin and Todd leaned over and said "are you nervous or worried at all?"  I honestly answered, "no, I'm not".  He said, "me either".  "So this is what it feels like?" I thought.  I have never experienced this feeling of true calm before a concert that Daniel was involved in.  There is always a level of anxiety.  How incredible!!!  It's not just him making progress!! 

Then, when one of his LINKS walked up to our seats and greeted us with her wonderful smile.  She excused how she looked as she just rushed over from dance practice.  She said one of the LINKS blogged about the concert (they all communicate through a private blog so they can discuss things that come up with their student and problem solve together and share information. They can all be on the same page all the time).  We chatted then she sat down.  Daniel's group was getting on stage.  It was perfect timing.  I sat back in my chair thinking she has no idea what she just did for me.  She took time out of her nutty senior schedule to come to this concert. Sure she probably had lots of friends performing, but I was thinking about how happy Daniel would be to see her after.  I settled in for the absolutely amazing concert.  These kids are something else!  We are so lucky to have such a strongly supported music program in these tough economic times. 

After the concert Daniel was sitting with his group in the audience.  He was on the aisle.  As he was standing up, juggling his huge baritone and his music three, yes three of his LINKS (the same three who happened to be in the musical) ran down the aisle toward him.  Their enthusiasm was bubbling over and they were complementing him, congratulating him and telling him how dapper he is in his tux.  Generally making a big fuss about his awesomeness.  They took pictures as a group with him.  I stood off to the side holding his baritone with emotions I can't even explain to you.  When we all finally dispersed Zach looked at me and just said "wow, that was amazing, what great kids".  I could only nod my head as I was choking back tears. 

On the ride home Daniel was chatting about how great he was (totally true) and I couldn't speak.  I was so choked up.  I knew if I talked I would cry and he would think I was sad and I wouldn't be able to explain that mom's cry when they are happy too.  So I just drove home acting like this is like every other day.  When it wasn't.  It was something I'll never forget.  When you spend your life pretty isolated, even though kids like Daniel, they are nice to him and include him, things like this don't happen.  Until now. 

Happy Mother's Day

 Happy Mothers Day!  Being a mom is one of the most special things in the world.  When Daniel was born a month early there were many complications and we spent the first 3 to 4 of his life separated from him by glass.  He was hooked up to so many machines and drips but when we would sit by him everything would regulate, his breathing, his heart rate, his oxygen levels.  Despite the glass between us he could hear our voices and we could put our hands through to touch his little body but he was protected from us due to his very vulnerable system. The power of parenthood was shown immediately for us.  The fact that your mere presence can have that effect on a baby is mind boggling.   The first time I was able to hold him and we were alone, I made a promise to him. I whispered in his ear that I would always be there for him.  That I would protect him no matter what.  That I would stand up for him and fight for him, as he was fighting in those first precious days.  I didn't know then what was in our future.  I didn't know how much of my life would be spent fighting for him and being his voice and his advocate.  But I think there is was a little part of me, now that I look back, that felt like the fight wasn't just in those first days at the hospital.  I feel like part of me knew it was always going to be more difficult with Daniel.  And it is.  But it isn't.  The rewards are grand.  The love is exponential.  I love both of my kids with all of my heart.  It is just different because they are different.  Zachary is the kindest soul and I love and appreciate everything about him. I can't believe some days how lucky I am that Zachary is my child.   My heart fills with pride and love for him, as it does for Daniel, but it is different.  Not more or less. 

Yesterday we didn't go to any fancy brunches.  That isn't really something we can do.  It was quiet around here with just our family of four.  My mother in law was with my husband's family enjoying their day.  I always spend a portion of my day, missing my mom and remembering the last mothers day we spent together, just days before she died at the too young age of 45, the age I will be this September.  I can't believe it has been 19 years since that day changed my life forever.  Because of these things I feel like I really appreciate how precious motherhood is.  It is the greatest gift in the world.  Yesterday I was surprised with a card from Daniel that he made at school, with his Link (a general ed peer).  It was a huge surpise for me because usually he doesn't keep a surprise.  He'll tell you he has a gift or a surpise because he can't keep it in.  He is bursting with excitement.  But this time he quietly told Todd that he had a something for me and he kept it quiet until Mothers Day when he gave it to me.  Here it is. I just had to share. It is just about the best present ever.  The flowers on front are cut out and glued on.

This is the inside of the card. It is a picture of me, of course.  In case you are wondering those are flowers on my shirt..... :) I wasn't sure at first... There is a tree, a star, a smiley face and a watering can for my flowers.

This page says, if you can't read it, "Dear mom, You are kind.  I can give you three loving kisses on cheeks and nose (this is a quote from a book.  Gotta love that echoalia)  I can thank you for making toast and bacon for breakfast in the morning.  And do you know what?  I love you!!"

The pictures are three pieces of toast and three pieces of bacon.  Precisely what he eats every morning.  An icecream cone, because who doesn't love that?!.   I think it is about the best card I've ever received.  I hope you all had a mother's day filled with love too.