An Homage

Taking a break from our normal topic.  I feel it's important to both acknowledge and celebrate tomorrow.  My wonderful, supportive husband Wally is turning 30. We have had quite a year together and I see no better way to celebrate his milestone birthday (aside from the new phone and the opening night tickets to godzilla) then to do a top 10 of my favorite photos (in no specific order) of him from our beginning to present.  I hope you all enjoy!

This is Wally and his Big Bro Mike at our baby shower.  

I'm not entirely sure why he's sitting on him, I just know mimosas were involved.

Auntie Coco took this one during Grayson's first halloween photos.

A year later she took this one during our apple picking trip.

Our first family photo, the day after Gray was born...excuse the hair :)

A classic wally pose, this time at our bridal shower.

Have I mentioned Auntie Coco is a professional photographer??  She takes all the best ones.

www.colleendolanphoto.com (go peek)

This was a trip to Rockport back in 2007. 

Contemplative Wally on our wedding day, hiding in the church.

(taken by the lovely Sarah Kristiansen)

One of our first (good) photos together.

Also one of his favorites.   2008

 Just Wally being....Wally.  Trip to Boston with friends from NY

2008

I hope you all enjoy my little tribute to my wonderful husband.  Without him I am pretty sure I would of fallen apart (completely) by now.    Next week, updates on ABA, new adventures, and a discussion on OT/sensory. 

Can you hear me now?

 

            Under recommendation of Kelly, a few months ago I scheduled a hearing test for Grayson.  While we all know he can hear us just fine, and ignore us just as well.  This test was more a way to see if we can determine what is causing his hearing sensitivity. 

            Wally (my wonderful husband/doting father of Grayson), has fantastic hearing and I believed was deemed perfect pitch at one time.  Though I maybe making that up in my own head by piecing together a variety of conversations with his mom.   Our thought was perhaps this is the cause of Grasyons sensitivity is that he is just hearing more then the average person.

            Well after 2 months of waiting today was Grayson’s hearing test.  2 minutes in he starts crying and sobbing.  I blame the weird motion animals in the boxes above the speakers.  He doesn’t play with toys like those, he actually hates toys like those.  So here we are, him on my lap against his will, a glass window to see the very friendly lady who was running the test and a large speaker on each side.  The door is closed and whille it’s bigger then the elevator we had in my old dorm at Salem State, it is not bigger then the room I slept in there. 

            Above these speakers are boxes, one with a motorized pig, and one with a motorized duck.  Everytime the beep happens the box above said speaker then lights up and makes a noise.  Grayson was ok during the first one, by ok I mean he didn’t start screaming.  But the second round he was done.  Suddenly I’m holding a cuddling screaming baby in my arms trying to keep him facing the window and contorting myself to do it.  We go for round 3 and that’s it I have a full fledged meltdown in my arms. 

            The wonderful Doctor (?) is trying so hard to keep going and so she comes around and says “Are the animals freaking him out?”  To which I reply “YUUUUUP”  figuring maybe there is an option for us to just use the beeps on the speakers she says “Well let’s try with me talking through the speakers instead.”  The problem with this idea is that the speakers have all this crackling garbled sound that make her sound like Darth Vader being played by Christian Bale’s Batman.  Even I am terrified of it.  

            So after one attempt at that and the continuing sobbing of Grayson in my arms she decides this isn’t working (DUH),  So we all come out of the room, Grayson is now searching for a binkie which I stupidly forgot to check his bag for an don’t have.  She tells us that we started at 40 decibles and he could hear those clearly.  She would of liked to go lower but unfortunately we weren’t able to get there.  Would I like to schedule a test for another time? 

            NO No I would not like to continue to subject my child to a means of torture on a monthly/quarterly schedule but golly thanks for offering.   At the end of the whole thing, Grayson had bounced back, though I promptly drove over to the nearest CVS and purchased a new package of binkies which were opened before we made it to the register.  He’s napping soundly in his crib while I question if I have traumatized him forever to motorized toys and figurines.  Have we cursed him to  always think that ducks and pigs are made to be trapped in light up boxes oinking and quacking for escape. 

            I’m sure at the en d of the day he won’t really remember this experience, though I am sure not to forget it.  The next hearing test won’t be scheduled anytime soon perhaps not until we have hit an actual requirement saying YOU MUST DO THIS, at which point I might still search for the opt out (maybe religious reasons will work?).           

            The ABA Process is a slow one, it never seemed this slow when I was the one with the new referrals.    We have submitted the letter (still no report from the dr) to the company and have signed off our names on all the paperwork saying , YES please come in an force our child to do discrete trials for 25 hours a day sometimes against his will.  The change from Sally to Kelly is official.   Sally is no more and never to be heard from again.  At least, not by me or my child. 

            I am embarking on a new adventure.  It will start next week though I may not be able to share the outcome for a while.  Our little family is in a completely different location then I thought it would be from a year ago.  I have made some personal choices and followed some dreams that haven’t worked out for us and now with all of this going on with Gray have forced me to reevaluate what truly matters and what we REALLY need.

            Wish us luck.  I hope to hear from you all soon!

P.S.  I have been made aware of some comment issues.  I am hoping they are fixed.  Please feel free to contact me through Facebook if it is easier but I would love to start discussions here as well. 

How 2 weeks changed our lives.

Two Weeks Later.

            It’s been two weeks since my son Grayson was diagnosed as Autistic.  I have spent the past week dealing with the overwhelming amount of phone calls, dr’s visits to schedule and changes that need to be made in my son’s life since that moment.  But at the same time, I continued to work (the next day in fact) celebrated Easter with my family and in turn have taken little to no time for myself to actually absorb what this all means.

            Let’s back up…My name is Kristina, I have a 25 month old son Grayson who has been in speech therapy through our local EI (early intervention) for almost a year.  It will be a year in July since we signed the IEP (individulized education program).  I warn you there are a lot of acronymns in this field so if you are not familiar with them I will put a glossary post or something for a reference.  I worked as an ABA (applied behavior analysis) for 3 years.  Two prior to my pregnancy with children 0-3 and one year in a preschool setting while pregnant.  After Grayson was born, I took a year off to spend with my son and figure out my next step.

            Grayson was approximately 15 months old when I began to get concerned about his language.  While my pediatrician advised me that it wasn’t necessary to have him seen so young, I got the referral anyways and began his speech therapy.  Almost a year later and my son has approximately 7 words.  He doesn’t say mama, though dada is one of his favorites.  He has lost words that were once there and has no desire or (possibly) ability to imitate the sounds of his teachers, fellow students and family members. 

            Grayson has flapped his arms for as long as I can remember.  Even when he was little (no really little) we called him a little birdy.  He would get excited and his hands would flap away and his mouth would get wide and everyone thought it was just adorable.  I thought it was just my own background with children on the spectrum that made me grimace.  As he got older the flapping did decrease, though constantly present.   He started craving other forms of input though, running his own fingers down his face.  Leaning against us, grabbing our hands and leading them to his back for vigorous back scratches.  Clinging to us for some kind of input. 

            Our son in not a cuddler, so the day that he laid on top of me for 30 mins while I scratched his back, only moving to request more (in sign).  I knew something wasn’t right.  I mentioned these facts to our  developemental specialist  Sally (name changed to protect..well something) over and over again.  She smiled, she nodded and told me things like “I’m sure it’s not a big deal,”  or “Well he doesn’t seem to be flapping as often, right?”  Suddenly, this January for Grayson’s 6 month follow up, a new speech therapist Kelly (again name changed) joined us.  She would be working with Grayson an extra hour a month so she could observe and help with his development.  

            Soon, Kelly picked up an additional session every Monday. It took her 4 visits, to look at my child and see what I had been saying for almost a year. Meanwhile Sally was still telling me that despite my desire for an OT (occupational therapy) consult, that it wasn’t needed.  Sally also started telling me to not get my hopes up for him to qualify for public preschool.   I knew based on my background that this was not the right person to fight for our needs. A week after this conversation with Sally, Kelly came to his speech group.  We watched as Grayson climbed up the stairs to go down the slide with his peers.  Instead, he stood in the back, and flapped his arms for the next 5 minutes without anyone saying a word to him. 

            It wasn’t until I walked over, guided him to the slide, and took his hand as he went down, that he finally stopped flapping.  I walked back to her, tears in my eyes and said “What do we do?  What needs to happen to get the right answers?”  She saw what I had been seeing for months but was afraid to say.  She recommended that we get him a developemental evaulation.  I called that afternoon while Gray napped.  We had our asssessment on April 18^th.   We got a diagnosis that day. 

            It’s been a long 2 weeks for our little family.  Since we received the diagnosis, I returned to work at a very busy local bakery and hid myself in the fast paced environment.   My husband, plays with our little man like nothing has changed (let’s be honest nothing really has).  Upon returning to work, my husband has contacted the HR rep of his office to find out what we need to get the insurance covering the ABA therapy that my son has been recommended to have for 25 hours a week.  We have discovered that we may need to pay for the first $1000 up front thanks to his companies deductible health insurance plan. 

            I have contacted Gray’s pediatrician, to get the ball rolling on his developmental pediatrician referral.  Only to be told I need to wait until the report comes in (2-3 weeks from now).  I have a letter waiting to be delivered to the EI office so they can start the paperwork on his ABA referral as well.   Of course the week that followed the diagnosis, EI was closed due to school vacation.

            This week, Kelly has been placed as his new developmental specialist.  Sally has been removed, never to be seen or heard from in this house again.   Kelly has already been in touch with my former employers to get the ball rolling on ABA, and the good news is because of his age we may not need to worry about insurance anymore.

            It’s been 14 days today,  since my son, the light of my life was placed on a wide, varied spectrum full of ranging diagnosis and children of all ages and levels.  While for him nothing has really changed, for us his parents, everything else has.

            I’m starting this blog, to keep family and friends updated. To maybe get some feedback from those I already know in the field, those who are in the same position, those who are wondering if the woman in their house is the right fit.  I have the added advantage of having worked in the field and knowing some of the hidden secrets.  Not everyone has that chance, or has that knowledge and I clearly don’t know all.  But the more we share with each other the more we can make happen. 

I hope you join us on this journey.  I hope to do weekly entries, and maybe more as we go on.  As thing change and develop, or as I go through the next steps maybe I can help somoene who is stuck.  Or maybe they can help me.