My baby is gonna be 3!

Grayson's birthday is coming up on March 3rd, I've been taking some time out of my normal scrapbooking time to get his birthday invites together.  This year we are doing Elmo as our theme, inspired by the little man himself.  He loves this stuffed elmo Wally's parents got him and it goes everywhere with him.  Every year I have made his invites with the assistance of my Cricut expression 2.  This christmas though, my hubby and parents all got together and upgraded me to the new Cricut explore!!

It has been a bit of a learning curve with this machine as everything is online based and there are lots and lots of new features to work with and figure out.  I have still managed to utilize my growing scrapbooking skills and created 14 of these little guys to pop out of his invites.

How adorable are these little guys?  I mean I know it's Elmo but I am totally in love with how crisp they cut and how simple they were to put together.  I'm just waiting on some last minute information from Wally's parents who usually let us host the party at their house because it tends to be easier with the amount of kids and people that come.   But here is a little sneak peek of the final product before they get written in and mailed (hopefully by this weekend). 

I know the blog can get pretty serious sometimes.  I want to share the good and the bad with you all, and we're really excited about our little man's birthday and seeing what this new year brings us.  I'll be sharing some other party planning details as they happen or as I test out new ideas.   I'm hoping for a test cupcake run this weekend, though the colors will be a little more red white and blue (GO PATS!). 

No really...Where is it?

So first of all, I just want to say thank you to everyone reading this blog!  We are almost at 1,000 views!!!  I'm so grateful to all of you for reading, sharing and listening to our story as crazy as it gets.  Let's keep it going!!

As you all know, we have been going through Criterion Early Intervention for all of Grayson's speech, play group and other needs.  This also included at one time having an OT (occupational therapist) come out to the house and do a full assessment.   I believe I wrote an update on this visit back in July.  Since we are trying to make sure we have all our t's crossed and i's dotted for his transition/IEP meeting in February, I figured I would check in with our current speech/case manager and work on getting a copy of that report for our own records as well as for the school.

In fairness to Criterion, I had forgotten all about the report up until recently.  Honestly, there has just been too many other things to focus on, like my new job, Wally's loss of his, Grayson's third case manager in less then 18 months and his transition meeting to preschool.  It was no fault of his newest case manager (let's call her Dawn) that she was completely unaware that this assessment had even happened.  But imagine my surprise, when on Tuesday night at 8pm, there's Dawn on my phone telling me she had been searching through his file and while there was a copy of the home note the OT had given us a copy of at the time, there was no filled out assessment, there was no written report and there was no paperwork ever stating that he had actually had one completed.

On top of his missing paperwork, I was then told that apparently the OT in question no longer worked for the company.  I could get no more information from Dawn other then a "she's no longer with us" statement that was leaving a very bad taste in my mouth.  Who was this woman who came into our home?  Who looked at my child, provided me in depth OT advice regarding his treatment and had filled out a multiple page questionnaire with both mine and his information?  Where was his paperwork that contains specific information to him, his diagnosis and who knows what other personal information?  Why does this woman no longer work for Criterion?

I ended our phone call attempting to sound like I felt I was in good hands, that Criterion would work on it.  We had another OT coming out on Friday for another assessment, who was working hard to get a report to the school district before his meeting only 2 weeks away.  But while relaying this information to my normally calm, understanding and much more level headed husband.  His response of "But where is the paperwork?" made me start to question this myself.  We talked about it further the next day and it was decided.  I needed to contact the director of Criterion myself and see what we could find out.

I called "Mary" on Thursday morning, leaving her general voicemail saying I was concerned about the OT situation for Grayson.  She left me a direct phone number to reach her at and said she was aware that another OT was coming out to the house the next day but would be willing to discuss any questions I had.  I called her back as quickly as I could.  We had a short conversation but I was clear none the less.  I was concerned about the status of my son's information and paperwork.  While she gave me a multitude of apologies and promises that they were doing everything in their power to find it, at the end of the day she didn't know where it was, she couldn't promise me that this woman didn't still had his information, and they were currently unable to reach her to confirm either way.

Ladies and Gentlemen, I would like to introduce you to our first HIPAA violation.  "HIPAA is the federal Health Insurance Portability and Accountability Act of 1996. The primary goal of the law is to make it easier for people to keep health insurance, protect the confidentiality and security of healthcare information and help the healthcare industry control administrative costs." While this wonderful little ball of wording doesn't necessary seem like it would be tied in with our current situation I can assure you it is.  Since my first day at BEACON I was taught about HIPAA, a former secretary of my current school was let go because of a HIPAA violation (one as simple as not BCC'ing the email addresses of parents in a holiday party email).  

While confidentiality in a situation like this may not seem all that dire, I mean she really only took the assessment which she filled out in the first place, this is still of great concern to us.  We have gone through 3 separate service coordinators, one of which was removed due to her (shall we say) poor performance.  We have had an OT come into our home and collect private information of our young son, we have no idea if she had access to any other information in his file such as social security numbers, health care identification or other things that could provide her the ability to access any number of things under his name.  

I shouldn't have to be worrying about where my son's paperwork is at such a key point of his development.  Our focus needs to be on his treatment plan, his transition to preschool and making sure he is getting the services that he needs.  It should never be about where this missing paperwork has ended up, why they never had any record of him getting the assessment in the first place, and why they are simply considering it a poorly filed situation when she was so clearly able to get the first form filed in the right place.   While I truly hope to receive a phone call this week that tells me they have found his paperwork and all is fine.  I know that this is most likely not what will happen.  I can tell you though.  If anyone asks, Criterion Early Intervention, is not a place I would recommend sending your child, nor is it a place any of my future children will ever go. 

Fight the Good Fight

When starting the process of transitioning Grayson into preschool, I was well aware that we would be in for some type of fight.  What I wasn't prepared for was something that was said to me earlier this week from the Special Education Director.  While checking in with her regarding an odd question from the school psychologist (The question being "What are your plans for Grayson in regards to preschool?"  A question I wasn't prepared for because it was under my assumption that as my son was being assessed by their school I thought my intention was pretty clear.)  She was pretty clear in explaining to me that my concerns regarding what services Grayson would receive should be more broad spectrum instead of simply ABA focused.  

Apparently, because of the flow chart the school district follows there is a chance that my son, who while very intelligent, has a clear diagnosis that has been assessed to him by not only a trained professional but a Doctor in the field, may not qualify for any services at all.  Not just ABA or Speech but that he may not even be granted a spot in the preschool.  She continued to tell me that while she has to let every parent know this, there are some very clear delays (speech, OT, social, these are my predictions for the record) that will most likely qualify him for the preschool program.  

Once again she has repeated to me that just because he has a diagnosis, he doesn't have a disability.   A statement I am still unable to comprehend simply due to the fact that according to the Department of Education in the state of Massachusetts, "Disability shall mean one of more of the following impairments :(a)Autism - A developmental disability significantly affecting verbal and nonverbal communication and social interaction. The term shall have the meaning given it in federal law at 34 CFR §300.8(c)(1)."  http://www.doe.mass.edu/lawsregs/603CMR28.html?section=all#start.    

Upon hearing this, I was instantly shocked to say the least and decided that it was best for me to take it to some of the people in my life who have more practice in this situation then I.   These people are the wonderful people I work with, for and whom have all been very supportive and knowledgeable in regards to this entire process.   Needless to say, while explaining this information to these very helpful people, there wasn't a jaw that wasn't on the floor while listening to my story.  My boss Eleanor* (fake name) instantly recommended that I speak with one of our head doctors, who also happens to be one of the bigger names in regards to Autism Diagnosis.  

I was hesitant, as him and I have never spoken but figured at this point that it simply can't hurt.  So this past Friday, he and I sat down.  We had an informal chat regarding my concerns, thankfully Grayson's diagnosis was performed by another member of this doctor's team, so he was easily and quickly able to look it over and consider it.  He has since set us up with an appointment with a developmental pediatrician who will be able to assess Grayson's growth and whose report will then be evaluated, considered by the team of doctors and hopefully provided to us before Grayson's IEP meeting in late February.  

My lesson for this week boys and girls.  You are the best advocator your child can have.  Never let them tell you they know what's best.  If your son has a written report regarding a diagnosis, from a trained professional, the answer is always YES they need a copy for the file.  If you think something they are telling you doesn't sound right, find someone else to ask.  There are advocates in every state that can provide education to parents or even a good place to start in regards  to your rights.  Study up, go in friendly, smiling and willing to listen to what they have to say.  But at the same time, know the answer to your questions before you ask them.  The first IEP is hardest (says the person whose going through the process) because they want to assess your child in an hour session and pretend they know them.   At the end of the day always remember, as their parent you are the person who knows them best and you are the best person to fight for them. 

Welcome Back

Happy New Year!

Well it's been a while, and as all too often happens, life has gotten in the way and things have fallen to the side.  So much has changed since I last updated it's hard to even know where to begin.   I spent 6 wonderful weeks at home with Grayson, got to see him learn with his ABA teachers and help my father in law finish off our basement remodel.   The basement has completely changed our entire living experience.  Wally and I each have our own areas for hobbies and relaxation, Grayson has his own (and largest) area which has all of his toys and grants us to have a living room again.  

I have returned to teaching ABA again.  I am a Behavioral Therapist for a Private school who takes all levels and ages of children.   I am expanding my abilities working outside of my comfort zone working with a 16 year old, a 9 year old and a 4 year old.   I have learned a lot and am continuing to learn every day.  Wally has hit a slight bump in the road with his new job as they decided to downsize a few weeks before christmas and basically got rid of his position.   We are doing well, surrounded by wonderful people both family and friends and are ready for the next adventure.

Now, on to the real reason your all here.  Grayson is doing amazing! He is up to 18 hours a week with another increase in hours coming in the next few weeks.  He has increased his words from 5 to almost 50, he puts together 3 word sentences and has lots of demands.  His flapping has slightly decreased but is still pretty prevalent.  While he doesn't always walk up to his peers and interact with them.  

Playing with his cousins (Logan and Carter) has always been very easy for him.  Back in August we went to New York for Carter's 1st birthday.  Grayson while shy at first, was quickly engulfed in Logan, Carter and Bryan's activities.  The boys always made sure to include him, to the point that while jumping on a trampoline together (something Gray wasn't fully able to do at the time) Bryan made sure to grab his hands to keep him steady and would stop jumping so he could catch his balance.  It's an amazing thing to see the natural acceptance children have at this age.  Logan may notice that Gray has no words but he always makes sure to show him what is going and what he thinks is a good toy he might enjoy.  

This was the first Christmas that Grayson actually realized what was going on.  From the moment the lights were hung up in the living room to the day the tree left the house he was enthralled.  Thankfully, he didn't fully understand that the gifts under the tree were actually gifts, so up until Christmas Eve he pretty much left them alone.  Of course once he opened that first gift, he caught on and kept trying to open everything else whether they were for him or not.  We were lucky that he didn't fly away on Christmas morning once Santa had arrived with his new train set and race track.  

In more serious news, we have begun the process of his IEP (Individualized Education Plan) and transition to preschool through the school district.  I have high hopes and expectations for what they will provide. I am also aware that this will probably become a fight.  Currently, Grayson has had his first 2 assessments with the school, one with the teacher and one with the speech pathologist.  The school psychologist will observe him in group and I believe (I need to confirm this as she hasn't been mentioned) the BCBA will be observing the psychologists actual testing as well.  

The things that we know he will qualify for are 2 1/2 hours of preschool time.  There will some time with speech and their typical sessions of ABA are two 15 minute session per day.  The things that we are expecting are the half day of preschool until the September following his 4th birthday at which point we will want full day.   I would like for him to get three 30 minute sessions of speech a week.  He currently receives an hour a week so this isn't that much of a stretch.  In regards to his ABA I would rather them not bother with in school sessions and have the ABA instead spend some time in class helping to foster social interactions.  Instead, I would like to have in home ABA sessions of perhaps 2 hours a day in either the morning or after school to continue what has already been working so well for him.  

We won't really know what is going to happen until we get the reports back from the various assessments and the IEP meeting in February.   I plan to share my reports with my boss and find out where we really stand as things develop.   Obviously as things progress it will be shared here to keep you all in the loop.   Please feel free to post questions or things that you would like clarified for your own understanding.  Thank you as always for joining us in this adventure.