Hellobee Boards

@LovelyPlum: Thanks love! In a way it would be great to get a diagnosis, in other ways it's of course very hard too. The paperwork has been a beast for all of this!

I'm worried he won't qualify to a level that they will help, so I feel lucky that we got the last appointment of the day, so he won't be at his best by that time of day. He's so good that he can be tricky to express the behaviors we are concerned about.

Mainly I need diagnostics and I need insurance to cover this so we can broaden the therapies he's getting, so fingers crossed!

@jhd: @twodoghouse: @twodoghouse: @mrsjyw: @autumnlove: Thank you!

Sounds like this may be a good guest blog post eventually. I'm learning that there are so many routes you can take! One day at a time....

UPDATE:
The intake appointment went well and was really simple. Really just signing papers, answering questions, copying his birth certificate, and showing that there is an actual child involved.

We still aren't officially "in" yet, but because he's four, he's qualified for an "at risk" designation, which means they have to give him an evaluation.

Now we are waiting for two additional interviews, one financial, and one home visit. The lady was amazing, such a help in answering questions about things that still don't make complete sense to me. She was very supportive, offered sound advice that echoed what our school speech therapist recommended, which I'll go into later after more research. She had even called to set up this appointment at 5:30pm on Good Friday, she said she tries to catch people when she can actually talk with them. Just amazing!

Now to think out loud about my plan for now...
Our next step is to wait for these two interviews, whenever that may be, from a different branch- Arizona Long Term Care Systems I did learn that we will need to get a formal diagnosis completed by 5 years since they do re-determination of needs at 6.

This process is so confusing, there are so many ways to go about diagnostics. Our school and pediatrician don't offer it, so we need to look outside of them. Pretty much everyone I've talked with have gone through developmental pediatricians for diagnostics. I am pursuing both a psychologist and developmental pediatrician at the moment. We were referred to a developmental psychiatrist by our school, but he was booked and referred us to a developmental psychologist since we aren't looking for drugs at this point. We will need to have an IQ test from a psychologist submitted to the state, and our pediatrician, after MUCH nagging finally referred us to their developmental nurse practitioner (then had a 10 week waitlist for an appointment at the end of this month) for an "at risk designation" (which we apparently already got from the DDD) who will most likely THEN refer us to a developmental pediatrician for an actual diagnosis. I'm still pretty stunned that our state benefits has been going smoother (knock on wood) than working with our actual pediatrician.

@MommySLP: That's actually our next step, great recommendation! The school has never really made a move or offer towards evaluating him for autism, even though both his teacher and SLP recommend it. The appointment today with our developmental nurse practitioner gave us a good reminder that we have to push and advocate for everything with the school and state.

When I talked with DDD at the previous appointment, they said the school psychologist may not have the appropriate licensing to do a diagnosis. She gave us information to find out through our state's board of psychology, and our school's psychologist is in fact qualified for this.

Another UPDATE:
Last week we were assigned a coordinator with our state's DDD. We are still waiting for a couple evaluations through ALTCS (long term care) which is financial and medical evaluations apparently. The DDD coordinator has set up a home visit with us for next month.

Today we had our long awaited Developmental Nurse Practitioner appointment at our pediatrician's office. We scheduled this back in early Feb, she was booked out until now! This appointment I was pretty ambivalent about- it felt like a complete waste of time since she couldn't give an official diagnosis and was making us wait so long and our pediatrician couldn't even give us an "at risk" designation, nor were they particularly interested in my concerns about him possibly being on the spectrum.

Turns out this appointment was worth the wait, there's a good reason she books out 2 months at a time! Nurse D gave us so much information, explained a lot, and assigned us some goals to complete until we see her again in a couple months. The boys survived a 2.5 hour appointment in a small room without too much destruction. Only a few wooden blocks thrown at my head

I had filled out an extensive milestone survey a month ago, so she asked questions about some of those items. She asked questions from an evaluation for autism spectrum disorders about his typical behaviors. It was hard! Some of it is realizing red flags I had missed, but also trying to recall items she was asking about. Questions about how he typically plays with toys or other children, foods he prefers, etc.

Upon reviewing the questions, she says he hits the spectrum in multiple areas and that we should proceed with getting a formal diagnosis now rather than waiting until he is older. She was surprised/not surprised that the school hadn't done an evaluation yet. She recommended calling and putting a request in writing to have it done before the school year is out and gave me some example letters. It would be nice to get the school to do it, because our insurance will pay half to none of this depending on where we go. The cheapest I'm finding is $900, which we can swing if I can cash in some of my vacation time.

If the school proves to be difficult, we also have an appointment set up next month with a developmental psychologist that was a referral from another referral that the school recommended. Yeah, confusing. I will probably keep this appointment even if we get testing through the school because I'm seeing that the more information we have from different sources, the better!

So a mixed day today- good that our concerns are justified, but not good that they are justified. I just have to keep reminding myself that autism comes in so many different forms, it's not anywhere near the end of the world.

Inspirational quotes have been my gravy lately. To quote a book I'm currently reading:
"I'm blessed to have been a part of raising him and my - the big point in this book is that he's not my idealized son. He's not the one I dreamed of, but dear God he's my ideal son."
-Ron Fournier, Love That Boy

http://www.npr.org/2016/04/16/474485668/political-columnist-ron-fournier-talks-new-book-love-that-boy
*Warning, this story had me driving in tears. I had to pull over the car because I started balling! I stopped by the bookstore on my way home.

Great update today Really grateful for my hive support, it's been very helpful on so many levels! We got the school to agree to testing today! Onward with the novella-

I left a phone message at school on Monday afternoon asking for more information and dropped off the letter on Tuesday when I took Cam in to school. I had been hoping to run into our SLP and give her a heads up, but both she and my son's teacher were in meetings that morning. Our school SLP then gave me a call that afternoon, it was really cryptic and confusing, basically she just asked that we meet up with the psychologist about a half hour before pick up today. She's very bubbly and cheerful and her call had me really on edge because she wasn't herself and she was obviously holding something back which made me extremely nervous about this meeting.

We had our independent speech therapy on Wednesday, and they were super helpful in finding interpretations of DDD's requirements for the evaluation (an IQ test and other evals from a LICENSED psychologist, psychiatrist, or developmental pediatrician) so we got on the state psychology boards and looked up our school psychologist.

I was just in a huge funk from taking in the evaluation meeting Monday, the phone call, and feeling stressed about getting everything done by the end of the school year at the potential of being in limbo all summer long and paying full price for our speech therapy another 3 months. I usually work some evenings, but had this week off, so I just had to get out of the house and take a break. Luckily my husband understood, so I went out to eat my weight in fish tacos and have a beer and did lesson planning for my real job (coordinating all of this really is a part-time job!). I just had to get away from all things autism for a few hours as it tends to follow me around day in and day out while I research the crap out of everything. That's just how I function.

Today we had our first meeting with our Support Coordinator with the Dept of Developmental Disabilities, who will be helping us at least until he is 6. (In AZ, they are a branch of Dept of Economic Security and help coordinate the services that families receive- Physical Therapy, Occupational Therapy, Music Therapy, Hippotherapy (horse therapy), Respite Care (taking a break), Speech Therapy, and Habilitation B & M (ABA therapy for younger children with autism), (to my limited understanding so far, of course!) If we qualify later on she will help us determine what we can use.

It went well and she was very helpful, surveying Cam's habits, asking lots of questions, and explaining the next steps in the process. So far we have been thrilled with the help from the DDD, they have done each step within two weeks of completion of the previous step (our initial application was in February, and here we are at the beginning of May). Our next step is waiting on ALTCS (AZ Long Term Care System) who gives the funding for the services that DDD coordinates for. Next we will have a financial phone interview asking about trust funds and other accounts in C's name. Then we have a medical home interview where they will ask questions about him, such as "Can he dress/feed/etc himself" we've already been warned that what they want to know is can we give him directions and he will do it 100% of the time. Yes, or No, with sometimes considered to be a yes.

This is where our school is worried because his Battelle was higher and they are worried this will disqualify us. We are hoping that the diagnosis will help us qualify, and that they aren't in too big of a hurry so we can get that done first. Another thing I learned is that the state will cover Autism, but not Asperger's or PDD-NOS. Still many obstacles out there that could make things more difficult for us. Fortunately our coordinator said that we can continue to reapply to Long Term and that many that don't qualify at 4 will qualify later at 6 years old.

It is always challenging to cover all of our concerns each time we meet someone new. I realized that I need to make a master list of our concerns/his stereotypical tendencies so I have them at a glance instead of trying to come up with each little piece when asked a question. I have learned so much from meeting with the developmental nurse practitioner and from meeting with our speech pathologist and school psychologist last week. Each group helps me learn new things and sets me off for more research.

One big thing that was brought up at today's meeting was our end goal. What are we doing all of this for? There are so many reasons of course, we want him safe and able to communicate when out in the community, we want him to lead as normal of a life as possible and hopefully go on to higher education, but most of all I just want a happy kid. I want him to smile and laugh more. It was a big shock at the end of the meeting, he came over to the couch and gave me a giant hug. Pretty awesome when I nearly always have to initiate that.