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.