Friday, 20 December 2013

A Blessing to Our Family- Cisco Center

I have mentioned Cisco Center before, both of the boys have been going there since last April, Nate more so than Jack.  I have talked about how wonderful it is to send them to a place where they are accepted and understood.  But I don’t think I have done the staff justice.  And unless you have a child with special needs, I’m not sure that at first or even second glance, you would appreciate the small things that make this center extraordinary. 

I will try to explain by telling you about the Christmas party they had for the kids today.  From the perspective of how Nathan was treated.

It was just me and Nate who went today, Jack was in school, so it was nice to have some quality time.  He was thrilled to be in the car with me, and then we pulled into the parking lot.  We have this issue every time I take him to Cisco for a gathering, he thinks I am leaving and becomes hysterical.  So we walk in the door and what does he do?  He throws himself on the floor (note that he does not do this outside, he waits until he will be more comfortable ;-).  A couple of people glance at us, but do they run over?  Nope, they say “hi Nathan!”  Because this is expected and they are good with it. 

They scheduled a “craft” for the kiddos, but kept it incredibly simple, reindeer food, which helped minimize the meltdowns.  The kids that did not have a parent there had a staff member one on one assisting them.  There was quite a bit of screaming and resistance, but not one of the staff appeared ruffled.  At all.  We then went upstairs for some carols and an eventual visit from sensory friendly Santa.  Mats were strategically placed for kids to have a place to sit comfortably (read:  sprawl out and roll around if necessary), and then here comes Carla (pure awesomeness), tossing different fidgets and objects that provide sensory input to the kids.  Nate got a yellow, plastic bean bag thingy, which really kept him occupied in a way that I have seen few things do.  The singing was mostly parents and staff, some kids had their hands over their ears, or cried, they were hugged, tickled, comforted.  One thing was very apparent all morning- this staff LOVES these kids. 

Sensory friendly Santa arrived, and as you can imagine, not everyone was happy to see him.  This Santa, first of all, looked awesome (I have seen some pretty fakey Santa’s lately), he smiled and laughed as kids writhed and ran away from him, and each child received a handmade gift.  Natey got his first airplane that was all his own.  He was captivated.  The staff took picture after picture of the kids with their parents, attempting to get a good shot, which is a challenge (to put it mildly).  We got a few amazing pictures of Nathan today; he was just so happy all morning- I still have warm fuzzies thinking about it.

We went downstairs to eat, where almost half of the food was gluten and dairy free.  Granted, Nate was dive bombing the non-gluten-free Chick Fil-A nuggets, and if I’m being honest, I let him have a little contraband today- hey it’s a party, and gluten really doesn’t have a huge effect on him; for him it’s dairy.  Each child was given a gift by the staff.  Something amazing happened when Nate opened his gift- first of all, he actually made a half-hearted effort to rip the paper, although I had to take each piece he ripped away so that he wouldn’t start with his origami paper shredding.  That in and of itself was huge for him.  But when the paper was off (it was a train set), I pointed to the box and said “look, Natey, a train, a choo choo”.  He looked up at me and said “choo choo!”  And he was EXCITED about it!!!!!  OK, I’m tearing up writing this.  The best part is that the staff was right there celebrating with us- they know how hard we work for every single syllable that comes out of Nate’s mouth. 

And this staff- they are amazing.  Cisco and Carla- well that’s a given- they have the biggest hearts you will ever encounter, and I really mean that.  What I haven’t mentioned is that the rest of the staff is actually pretty young- it’s not what you would picture when you think of a special needs school.  Most are in school; college, and even a few in high school.  They are required to volunteer at the center for a period before they are hired as employees.  And they are not choosing an easy job!  What’s more- they are so good with these kids.  They have incredible enthusiasm and energy, and what seems like endless patience.  When Nathan started giving hugs and kisses, these were some of the first people he doled them out to.   Carla and Cisco are not only providing amazing care to these kids, they are also passing on their knowledge to the next generation of teachers, therapists, and advocates.  Carla actually said to me that she is amazed by the trust the parents put in them, and I was honestly shocked into silence.  I have been very protective of my boys, especially Nate, since he can’t tell me if something is wrong.  I had in home daycare until last April; I knew everything that was going on with him all day.  It was hard to let go, and honestly, there is no one else that I would trust at this point.  Having a place that is not only safe, but also incredibly enriching for my son to go to is such a blessing. 

On our way out, I was telling one of the staff that Nathan made his speech pathologist and aid cry earlier this week.  We were leaving his school Christmas party (this kid has so much fun!) and as always I was telling him to say bye bye.  Which he never does.  All of the sudden he gives this halfhearted wave and says bye bye, clear as day.  Then he did it with his private OT, Miss Amanda, last night.  So I thought I would try it again today- he said it maybe 3 times to different staff members- it was such a happy moment.  He really is more engaged lately.  I know that Cisco Center has a lot to do with that.


Saturday, 14 December 2013

Our Christmas Card

As the Christmas cards start pouring in, I feel the need to let everyone know that we are not sending one out this year.  I don’t want anyone to feel like we are slighting them, because that is so not the case.  It’s a funny story….

About 6 weeks ago, John and I got the boys dressed in cute clothes and set out to take our own picture.  We usually have a photographer take our picture around the holidays but we are trying to save some money and this seemed a good place to cut.  Ha.  John and I put the boys in a chair in our living room and snapped no less than 200 pictures of the kids.  Nate was bribed with food, and Mr. Jack is in a phase where his smile looks like he is in pain- we are working on that J. 

In any case, after about an hour of this, we had had enough and figured we would have gotten at least a few pictures.  I uploaded them to the computer and started looking through.  Honestly?  Nada.  Seriously, out of 200, nothing.  Still I was not deterred.  We had one good picture of Nate and one good picture of Jack and I knew that heads can be swapped in this day and age.  I found some software online and after about 2 hours of fiddling, I got the job done.  I thought it looked great!  I uploaded it to Tiny Prints, it didn’t give me any “warnings” about poor picture quality, so I ordered the cards.

Fast forward 3 days- I got a call from a very nice customer service representative stating that the picture was blurry and would not look good if printed.  She wanted me to just “send another over.”  OK, I still feel kinda bad about this- I started laughing and just could not stop.  Like gulping snorting laughter.  I said, “I’m sorry, but that’s really just not an option.”  I explained to her what we went through in order to get this shot and she offered to refund our money immediately. 

Because of this, I do not feel even slightly bad about posting our proof here.  Consider this our Christmas card- we love you all and have a wonderful holiday!

The back is always our “reality” shot.  Jack- airplane- check, Nate- staring into space- check.

Thursday, 5 December 2013

Mommy's Day "Off"

What a day!  I took the day “off” today.  Ha I say, ha.  I had big plans to do some cleaning, work on some Christmas stuff, etc.  But first, it was time for yet another visit to Children’s National Medical Center with Mr. Jack. 

Today was his 6 month study follow up visit, which involved developmental testing, blood work, mommy questionnaires, etc.  We had to be in D.C. at 8am which I won’t deny was a challenge for us.  The day started with Jack standing next to my bed at 5am asking to see a picture of a colossal squid on my phone.  It is the new obsession, or as I like to think of it, side obsession.  Airplanes will always rule and he will always come back to them, but sea creatures are a secondary hobby for him.  Right now, colossal squid rules, and it is with the fervor of any of his new interests- very, very intense.  He is driving us crazy right now, but on the plus side, the toy he wants desperately for Christmas is $17.  Score!

Anyhoo, Jack had two meltdowns before we walked out the door because I took the ipad from him- little did he know that I was downloading a program for him to watch in the car about colossal squids.  Once we got in the car and I told him, he was fine, for a while.

We made it in time, and the visit for the most part was pretty smooth.  He showed literally everyone in the hospital the picture of the colossal squid and I can say with confidence that the research nurse was tired of hearing about it at the end of our visit (about 2 hours).  I wanted to laugh and say, he’s just getting started!  We are girding our loins over here for an intense next few weeks.  He is reaching the level of obsession where he doesn’t sleep much at night.  The level where he corrects every statement anyone makes about the topic- and he is correct.  I was joking with the nurse at the end of our visit and said “and this is why when someone else says, hey my kid is obsessed with such and such too, I want to scream that they have no idea what obsessed even means”.  She agreed wholeheartedly. 

I always put EMLA cream on the boys’ arms before a blood draw to minimize any discomfort.  Jack still has a pretty high level of anxiety though and it is a challenge to keep him calm and ahem, polite during these procedures.  Today he started out yelling at the phlebotomist “that’s not pointy, you’re not using it, you’re not coming over here, you’re not touching me”, you get the idea.  When she proceeded, he reached his  boiling point and all of the sudden he was SINGING “stranger! Danger! Stranger! Danger!”  in the poor woman’s face.  Meanwhile mommy and the nurse are ROLLING on the ground.  ROLLING!!!!  She had to admit, that was one she had never heard before.  Oh Jack you kill me.

The good news is that Jack’s weight has finally increased enough that the dose of medication can be doubled.  He has been on the lowest possible dose while sitting at the highest possible weight for that dose since May- so we will be looking for changes these next few weeks.  When we finished, I drove Jack to school, and went home- to relax.

When I arrived home it looked as though there had been a juice/mitochondrial cocktail explosion.  Apparently Nate and daddy had some issues in our absence.  So instead of resting I vacuumed and steam mopped the house (I mean upstairs, downstairs, bathrooms, kitchen, everywhere- it was everywhere).  I last did this on Monday.  THEN I was going to relax.

The phone rang.  It was the doctor from NIH.  Guess who forgot to draw one of the vials of blood they needed at the last visit???  KILL!  These hospitals need to quadruple check which tests they need- especially when the blood draw involves a small child with autism.  Hello?  If you recall, Children’s did this with Jack earlier this fall.  In this case, NIH at least did not ask us to drive all the way back down to Bethesda, they let us go to LabCorp, but they needed the test now.  So I picked up Nate, put EMLA on his arms, and took him for blood work.  We got it done just in time to get Jack from the bus stop.  And then it was time for dinner, and then I made a gluten and dairy free cake for Nate’s birthday.  John took one look at my face and decided he would take the boys to OT tonight.  Wise choice.   So that is why I am posting- I needed to vent. 

All of these things are my responsibility, and I am happy to do them.  But sometime, I would like a day, you know?  Or a nap? 

Tuesday, 3 December 2013

New Hope and Help For Maryland Autism Families

We have been blessed in many ways during our autism journey.  The friends that we have are genuine; the support that we feel is unconditional.  We are incredibly lucky.  A local family who is further along in their autism journey is taking their gratitude for this support to another level.  They have formed the Avergan foundation with the goals of advocating for autism awareness and providing financial support to families affected by autism through scholarships for services such as special needs educational programs, occupational therapy and speech therapy.  For a family who is still in the midst of their own journey to think so selflessly of others…..I find it incredibly admirable and inspiring.  So I wanted to share with my readers some more information about their foundation, and encourage all who are able to either attend the launch event or provide support in whatever way they can. 

Please see the information below—what a great idea, and a great way to connect with other autism families!

Our name tells this story... Avergan... it's a combination of our children's names.
While only one of our children was diagnosed with an Autism spectrum disorder.
the other was the reason we identified there was something special about our son.
The next chapter of our story begins on December 12th. Let's write it together.

We know that...
·         our son has come so far.
·         early intervention was the key.
·         we couldn't have done it without the county services we were provided.
·         the amazing teachers that worked with our son were our blessings.
·         we love our son, no matter the diagnosis.
·         we are the lucky ones.
·         we want to help others.
Find them on facebook:!/averganfoundation

Come to their Launch Party!  December 12th 7-10pm

Join us for the official launch party of Avergan Foundation! The event will be an evening of celebration and fundraising will all proceeds directly benefiting our scholarship programs for children on the autism spectrum disorders. Buy tickets here:

Avergan Foundation was created by Allison and Tom Barnhill in order to promote awareness and acceptance for autism spectrum disorders and to provide hope to affected families. As parents with a child diagnosed with an ASD, we know how important early detection and intervention are to the success of a child with autism. We also know the financial and emotional burdens are overwhelming. Our goal is to provide scholarships to families who cannot afford to provide private educational services to their children, such as physical therapy, occupational therapy, speech therapy and special education.

The launch party will be the first public fundraising event for the Avergan Foundation. We have an exciting evening planned with great music by Mixing Maryland, live music by Winship from The Audissey, a live and silent auction featuring items from many area businesses and amazing food, provided by Metropolitan. The highlight of the evening will be the premiere of a documentary short film, by Clickspark, that tells our story and shows the impact our foundation can have on children and families affected by autism spectrum disorders.
Come out for a night of fun, food and festivities! Start your holiday season right with an evening of giving for a great cause!

Where Are We Now

Look at us.  I look at this picture and I can see every emotion that was running through my head that day.  I was so happy, full of joy, and incredibly hopeful for our future.   It was an amazing day and one I will never forget.  It’s been 9 years today, which just feels amazing.  Don’t be calling me a newlywed- we are in the trenches baby.

Where are we?  I haven’t given an update on our family unit in a while.  There just really hasn’t been a need for one.  We are, in a word, solid.  We are at peace.  We are insane.  And we are busy. Most importantly, we are together.  The insecurity of the past few years is long gone, we have “graduated” from counseling and only return every few months to check in.  AKA, when there are so many moving parts in a family, it’s easy to start going through the motions.  We go, we sit, we make sure we are on the same page, and we move on.  I think we bore our counselor at this point.  How awesome is that?

Last year, our anniversary felt like such a triumph, because we were really still in the throes of overcoming all that had happened in our family.  This year- I just feel a sense of calm.  I am not worried about us anymore.  I am not worried about outside factors impacting our relationship.  We won’t let that happen, our family is too important.

So today, when I am feeling so very thankful for my family, I want to make sure and include all of you who support our marriage and family on a daily basis.  If it takes a village to raise a child, it takes a jam packed stadium of devoted fans to cheer a couple through all of the obstacles we have overcome.  You all know who you are, and you know how much we love you. 

I am a cheese ball today so forgive me.  The below song is on my ipod and when I took a walk today it happened to play.  This is how I feel now- like we have come through a storm, and have gained the respect of those around us.  Like we have found the support we need in each other and in those who have had faith in us.   

Oh and John, love you to pieces, and thank you.