Nope, Not Buying It Mommy

Today was Nate' first day of ESY (extended school year) services with the county.  This is provided when the skills the child is learning in school are considered life skill and there is concern that these skills will be lost over the large period of time off that is summer break.  I started talking to him about it yesterday, telling him "Natey go on bus to school", "Natey go school", etc.  Of course being that he's pretty much nonverbal it's difficult to know how much of this he was comprehending.  But this morning when he was snuggling with us in bed he said an approximation of "I go school", so I took that as a good sign. 

Not so much.

I have told you all that Nate has been really thriving at Cisco Center.  I mean the kid loves it there.  Below is Nate's progression to a meltdown over not getting in the car to go to Cisco Center this morning (captions of course added by me)




Let’s get in, you know, the car???

 




Uh, Lady, can ya hear me?  Do ya get it?









Fine, I’ll show you since you seem to be a little slow….











LET. ME. IN!!!!!!

 

It didn't help things that the bus was about 25 minutes late because a tree fell across a road last night.  He did go on the bus willingly when it eventually showed up, however he was NOT pleased.  I was happy to see some of his buddies from his regular ECI  class there.  The summer program is different hours, a different bus, different drivers, and a different school.  This is quite the transition for Mr. Natey, so hold a good thought that he has a good day!

"The Necklace" Revisited

I don't usually repost my old writings.  But this one has been stuck in my mind this week.  It has been one of my most read posts since I started this blog.  At first that kind of surprised me since this blog is about autism and this has very little to do with autism directly (although marital difficulties and an autism diagnosis of course go hand in hand).  But the more I think about it, it kind of makes sense.  There are many of us who have struggled in our marriages and come out the other side.  For those who have made it, they can relate to this story very strongly.  For those who are still having difficulties, I hope that this story is inspiring.  This remains my single favorite piece of jewelry other than my wedding rings, and for me it will always symbolize the breakdown and then healing of our family...

My Necklace (originally written 9/2012)

This necklace is very very special to me.  John gave it to me on our wedding day.  I wore it nearly every day for the first 6 years of our marriage.  Then disaster struck.  And it totally mirrored the state of our family.  Last November, around one of our lower points as a family, one of the boys grabbed it off of my dresser and threw it on the floor (apparently).  I was vacuuming and didn't notice it- you guessed it.  I heard that sickening sound of metal being ground against plastic.  It broke into 4 pieces.  At the time, all I could think was, see, broken- just like everything else (yeah, I was in a really good place back then).  I managed to find all the pieces, placed them in a zip lock baggie and put it aside.  Figured it was done for. 

Around Christmastime John asked me what I would like as a gift.  I told him I would like the necklace repaired.  I knew it was a long shot, but it really was very special, and I love it.  So he took it back to our jeweler, who consequently is the same person who sold John my engagement ring, and he said he would see what he could do.  John was able to go pick it up shortly before Christmas.  When he gave it back to me, he told me what the jeweler said.  He told John that he would fix it this one time, but that if it broke again, the damage would be irreparable.  You can see where I am going with this.

I went to put it on, and the chain was uneven, like pretty significantly.  I said very little to John about it, just put it away and counted myself lucky that it was intact at all.  About 2 months ago, I pulled it back out and put it on again.  Yes, it sits a little crookedly on my chest.  No, it's not as perfect as it was before.  But it is in one piece.  I wear it every time I am in something nicer than sweats again now.  I acknowledge the fact that it is slightly skewed, and I am proud of that.  It completely parallels our family life.  Slightly crooked, intact, and beautiful.  That is my deep thought for the day. 

Well, That Was.....EASY??!!

I wrote earlier this week, on Monday to be exact, about my mother turning my boys' grant applications in for me so that I didn't have to miss work.  I am here to tell you that for once, when I did something right, I got results and FAST.  I got letters in the mail today for both Jack and Nate, and they both received full funding.  What does this mean? In Nate's case it means that sending him to Cisco Center will be much less of a financial strain for us for awhile.  I can feel better than good about sending him- he loves it and it's financially feasible.  For Jack, it means that he is going to be able to start one on one, special needs swim lessons!!!  And he will get to continue them for most of the year.

This is a wonderful day for our family.  So often the hurdles autism families face seem insurmountable.  We jump through so many hoops, and at the end of the obstacle course we see messages like "warning, these services may not be covered for a diagnosis of autism."  It feels pretty damn good to do the work and achieve the desired outcome.  Go our family!!!

I Love a Parade...

When I told my husband that I thought we should walk in the local 4th of July parade with the Cisco Center float he looked at me like I had gone mad.  We usually don't take our kids to parades, let alone ask them to participate.  But I thought they could benefit from having this experience and figured that if ever we were going to try it, the safest way to do it would be while surrounded by about 10 special needs childcare providers and about as many special needs families. 

To those of you with neurotypical kids I should explain that a parade is nothing short of a sensory nightmare.  Large crowds, unfamiliar faces, lots of waiting, people throwing or handing things to you, loud sirens, bands, flashing lights, and no clear escape route if things get to be too much.  Jack has had several meltdowns at parades. 

My thinking was that participating in a parade might actually be better than watching one.  At least this way, the faces surrounding the boys were familiar, they would have the same noises instead of constant changes- and we got lucky yesterday since a Christian band was on the float in front of us.  And they would be moving instead of sitting still.  So I packed like we were going off to war, slathered on the sunblock, put the wagon in the trunk and we gave it a go.

I would say the hardest part for the boys (all of us really) was waiting for the parade to start.  We were standing at the float for a good two hours before we actually moved.  That would be hard for any kid, let alone ours.  Jack was trying to eat everything in sight, and Nate, well he was just running.  Everywhere.  He did pause to dance to the band next to us at one point though, which was ridiculously cute...

Candy diving, but notice he has an apple too!

By the time we were ready to actually get moving, John and I decided it would be best to divide and conquer.  Jack was really wound up, so he and John went to sit in the back of the truck.  This helped Jack feel a bit more protected, and worked out pretty well, although he did apparently still have some trouble with all of the noises.

Nate and I pulled wagon duty.  I was concerned about him staying in the wagon for the whole 2 mile route, but he did pretty well.  I even had a little help...

Nate had quite a few of the bystanders cracking up- he was playing the role of contortionist in the wagon.  Lying on his back, his tummy, sitting up, and his favorite, as shown below was dangling his legs over one side or the other.  Also, most of the time he had one shoe off, which is his norm (always the right one), but I can't even tell you how many people helpfully pointed it out.  People were so nice.   He did pretty well, but was ready to be done by the time it was over- hey, me too!

So we made it all the way through!  We hitched a ride back to our car in the back of the truck (roads were still closed) and had a quiet afternoon.  Especially him...

Thanks Cisco Center for yet another great experience!

In Complete Awe

Any developmental milestones are amazing.  As an autism parent I have come to appreciate them even more in my children.  It's a great day when Nate gives me more eye contact- if I get a new word, there are tears, without question.

Before I go into what I want to talk about I need to make something clear.  You may hear a bit of a wistful tone during this description, but while I was observing what I did today, I was NOT sad at all.  I was nothing but amazed. 

I had a quick lunch with one of my closest friends and her son today.  He is about 19 months old, and it goes without saying, completely precious.  I have watched him grow- from about 4 weeks gestation on, and definitely feel a strong attachment to him.  He has faced his share of challenges thus far, and I don't want to down play that at all, because it was a really big deal.  What I do want to say is that this child completely BLEW my mind today.  Here I'll tell you why.

He was being what any mom would call difficult this morning.  It drives any mom a bit nuts when she is trying to have a conversation and her child doesn't want to sit still for a second.  All I can see now is a child that is noticing absolutely everything around him and wanting to explore.  During the course of lunch, I heard him say sissy, cake, more, milk, mommy, dog, no (multiple times, ha).  He tried a straw for the first time and got it right away (Nate has not quite figured this skill out yet).  The woman sitting next to us was "quizzing" him, where's your foot?  He looked down; where's your shirt?  he touched his chest.  Then we headed to the toy store for a quick trip, and what I observed there was nothing short of miraculous (to me).  I watched him play with a little table and chairs, sitting at the table, getting up, pulling the chairs out, putting other things on the chair; I watched him push a baby doll in a stroller, then pick the baby up and put it in the chair, then put it back in the stroller again.  I watched him examine the doll's mouth.  He unloaded an entire rack of stuffed animals, one by one, into my arms while his mom was looking at something on the other side of the store- he was so methodical about it!!  His mom brought over a toy piano and he pulled up the chair to try it out.  He tried to play it; he said an approximation of piano.  He repeated everything he heard, when his mom talked to me about another child he repeated the child's name.  He looked at his mom at one point and said sissy?  daddy?, clearly looking for them, thinking about them when they weren't there.

Finally I turned to his mom and said, can you even believe this??  She knows me well enough that she knew that I was in complete awe of these developments.  She has been very sensitive about what I go through with the boys and I think she was worried I was going to be upset.  And in the past I may have been.  Today, all I felt was completely elated to see this little boy doing so fantastically.  I tried to express this to my friend, telling her how amazing it is for me to see him repeating sounds, pointing, expressing independent thoughts, and playing appropriately with toys.  These are things that all parents look forward to seeing in their children, no doubt.  But to me, after the difficulties I have faced with both boys' developments, it is like I have just witnessed a true miracle.  I think that all parents need to stop sometimes and really take a moment to appreciate typical development.  I know that for me, it took watching my child struggle to truly appreciate it at the level I do now, but I think that if someone had really pointed out to me how amazing it was when Jack was developing speech like a maniac at 14 months, I may have taken a bit more notice of it.  I wish I could go back in time and really really watch what was happening; revel in it.  The next time your little one says a new word or tries something for the first time and succeeds, make yourself take a step back and really observe and think about it, no matter how busy you are.  It's unbelievable what little ones do.

Today was also a really big step for me.  I feel like I have moved past one more stage of "mourning" for my boys.  I don't mean to sound morose, but it is true that when your child is diagnosed with autism you go through a mourning period.  You have to say goodbye to the child/life that you pictured and find a way to accept the very different future that awaits you.  It has been painful for me to watch my friends' children developing normally up to this point.  It felt wonderful to be able to enjoy it again.

LIVID

Doesn't even begin to cover it.  I received another call from Children's National Medical Center this morning, I know, shocker.  Despite the fact that I allowed them to draw blood from Jack a second time after the needle slipped out of his vein the first time (last week), they are telling me that the blood sample they obtained was inadequate.  Here is why, although they won't admit it if I bring it up I'm sure.  It's because when the needle slipped out of the vein the first time, the doctor continued to pull back with the syringe, effectively trying to skim a blood sample off the top of the massive hematoma she was giving Jack (it STILL looks horrible a week later).  I did this once or twice when I was a new nurse.  9 times out of 10, any sample collected in this way ends up hemolyzed, which in simple terms means unusable.  She only got one tube in this manner and then she couldn't get the rest of the sample.

So when she stuck my son the second time and had great blood flow, she opted to only fill the remaining tube and not collect the first tube over again despite the improper manner in which she collected it the first time.  No doubt the research lab called and told them the sample was hemolyzed.  It was not an "inadequate size"; both tubes were full, I saw them. 

Guess what they want me to do?  That's right, they want me to drive to DC AGAIN so they can draw Jack's blood AGAIN.  Before Monday, and not tomorrow, and not over the weekend.  So they would like me to do it today or Friday?  I am covering for people at work both days as it is a holiday weekend.  I am on the fence right now and very seriously considering pulling Jack from the study if they continue to insist that we make what will be a three hour trip due to their error.  I can't even call the coordinator back right now, because I know I will be rude.  Furious

If I Knew You Were Coming I'd Have Baked a Cake

Today is John's (my husband's) birthday!  Happy Birthday Honey!  Something I have been working on with Jack more lately is the treatment of others.  I want him to understand
how to be kind, and that everyone deserves to feel special. 

We worked on this on Father's Day, when Jack helped me set up John's new hammock (let's just say I ended up rigging up one end with the dog's choke chain- no joke), cook pancakes, bacon and sausage (two breakfast meats for Father's day, argh) and of course get daddy's Father's Day card ready.

I guess every family treats these types of occasions differently, there really is no right or wrong.  I have always been of the mind set that a birthday is a very big deal and that each individual should be treated as such.  We all deserve a day that's "about us" every once in awhile.  I have always done this for the people I care about, and I try to be as thoughtful as possible.  You know, favorite meal, nice gift, I'll do your chores type stuff.  I want Jack to do this for others as well.  I want him to understand that giving of himself is very important and that it can feel good too. 

I picked Jack up from camp yesterday and we got to work on daddy's cake.  Jack was VERY into it.  He cracked all the eggs, added all the ingredients, and as always, he was very enthusiastic with the electric mixer (so very similar to a propeller after all).  He was also very into tasting- go figure. 

The bakers hard at work...

the finished product....it's gluten/dairy free because daddy is a good sport

Jack did a great job this evening of letting it be daddy's birthday, for sure the best he's ever done.  He sat nicely at dinner, no meltdowns, he brought daddy his gift, and even handed him his others to unwrap.  In the past he would have flipped that they weren't for him.  So that's definite progress.  He also waited patiently for cake- he had to wait an hour and a half, and he did it.  Proud of my boy today.