The Final Straw

Since my last blog post in February, we have continued having the safety issue of Bennett escaping his classroom. He has escaped every single day, at least once a day, for over 2 months now. We spoke with his teacher on multiple occasions to try to come up with solutions but nothing is seeming to help. It's a little frustrating that we only send Bennett to school for 2 hours and 45 minutes and he still manages to escape every day. We spoke with Bennett's lead teacher at his last parent-teacher conference and asked is maybe we should hold another IEP (Individualized Education Program) meeting to sit down with all of the faculty involved in his learning to brainstorm ideas to try to ensure Bennett's safety; but his teacher told us that wasn't necessary and that we would attempt different things in the classroom. She has tried red tape on the floor for areas by doors he shouldn't be in as well as laminated stop signs on the doors to try to deter him; but all with no success. Cody and I even offered to purchase some type barrier for the exterior door and we were told by his lead teacher that she asked the school board and they said we couldn't do that because it was against fire code. We also asked if he could get a parapro (one-on-one person assigned to him) to help watch him more closely and help if he were to escape and the teacher told us it was too expensive to get a parapro and that they probably wouldn't let us have one but would look into it. Ok, so back to square one we are. Very recently, Bennett's teaching assistant in the classroom thought maybe he was being over-stimulated so suggested taking him for a little walk to break up his day and time spent in the classroom. That worked ok for two days; but he still escaped both days.

On Friday, I got a voicemail while I was in clinical from the Special Ed director saying that while at recess, Bennett had crawled through a hole in the fence in the play area (where he has been escaping to previously outside the classroom). He managed to run out front of the school, across the street, through someone's yard, and up onto their back porch before someone caught him. His assistant teacher immediately went after him but didn't do the direction he went and went another direction. Luckily, another teacher in a classroom saw him out front and ran down to the office and told them there was a child outside without and adult. The director happened to be the one to run out first and saw Bennett when he was halfway across the yard of the house across the street. We feel so fortunate that nothing bad happened to him and he was safely brought back to school. After I got home from school, I went to the school and met with the director. She filled me in on what happened and told me Bennett would now have a parapro with him at all times. I told her I was upset that it took this long to finally get a parapro and that it took him running across the street to finally have our concerns from the last two months taken seriously. The director looked at me confused and said she didn't understand what I meant. I told her that he has been escaping since February and she looked totally stunned and said this was the first she had even heard of Bennett escaping. I was infuriated! So clearly his teacher has never taken this to her boss and it makes me wonder if she ever even asked the school board about a door barrier. I filled her in on everything and informed her that Bennett would no longer be attending the school's classroom. She totally understood and supported our decision and we talked more about other options for the future if we bring him back next year, etc. We also discussed Bennett getting Out of Program Services (his speech, PT, and OT) while not attending the classroom program. We have another meeting set up for this coming week to make a new IEP so that he can continue his services and won't lose out on those.

So, the future of schooling as pretty rocky right now and we are trying to research and decide what will be the best academically and safest option for Bennett. We are just frustrated and are now wishing we would have trusted our gut feeling on not sending him to this school. Although we absolutely love his speech therapist, occupational therapist, and teaching assistant, and are so grateful that nothing worse happened; this is just the final straw and it's pretty unfortunate. But we have to do what's best and sometimes it's not easy and sometimes it's not fair.

Schooling and Insurance Coverage Updates

Bennett has been in school for 4 months now. We have had our ups and downs with navigating having a 3 year old in school, but we are managing. We had some issues with communication with his teacher, but after the last parent-teacher conference, I feel like we are finally on the same page and are working together to figure out what's best for Bennett and to keep things consistent between school and home. Our biggest concern with school right now is that Bennett has been escaping the classroom down the hallways as well as outside into the playground from an external door in the classroom. We are really trying to be patient and work with his teacher to prevent this from happening and keep Bennett safe. He has also been acting out more in the classroom to get attention when he is bored. We see this at home too when he isn't being engaged or challenged and we feel he isn't being challenged enough in the classroom. He knows all of his ABCs, can count to 20 (or 30 if he wants to), counts by 10s to 100, spells, knows his colors, knows his shapes, etc. So, we really don't think the curriculum is challenging enough for him.

His speech has really taken off in the last month; it's incredible the leaps he is making. He is still spelling with his letter boards and learning new words every day. We are working on using spelling as cues for him because it grabs his attention and it seems to be working well so far. He really enjoys watching himself say new words in a mirror, which is so adorable! He is starting to do a lot of echolalia (repetition of another persons spoken words), which is common with autism.

Cody and I have had several long discussions regarding Bennett's schooling for next year and we have decided that he will not be going to the public school program he would be in next year. It's an all day (6 hours) program and we are just not ready to send our (then) 4 year old all day, along with him being stuck in a classroom all day and struggle with not being challenged enough. We are looking into homeschool programs that have a good system for kids on the autism spectrum as well as trying to figure out how he will get speech therapy. We have options and we will definitely continue with speech, just have to figure out the best fit for Bennett and our family.

We have really been looking into getting a medical diagnosis of ASD by a certified doctor, but our insurance won't cover any services for autism. No coverage is available for diagnosis, speech therapy, physical or occupational therapy, ABA therapy, etc. I recently spoke with a benefit analyst at my insurance company about why these services aren't covered and how we can change that. I was told "there isn't enough research that supports these services and early interventions result in improvements for children with ASD". Umm, what? We have been told all along how important early intervention is! So, long story short, after talking with the analyst and the CEO of the hospital, I am looking to meet with some people in hopes to get autism services covered by our insurance or have it be an optional add on package (at a cost) to those who need it on their health insurance plan. So, I'm trying to find time to get as much research material and studies to show how important it is for these services to be covered for children with ASD. Let the fun begin, right?

Acceptance. Different, Not Less.

I think the hardest part about finally getting a diagnosis is how many people pull out of your child's life, like they've done something wrong or they aren't good enough. That's what breaks my heart the most. When friends stop showing up and start disappearing because your child is different and they just don't know how to handle that. Instead of disappearing because of the unknown, ask questions, get to know how he is different, what he likes, what his personality is like; and accept that he is different, not less. 

It's also hard when people tell you they are sorry. Sorry for what? I really don't get that. There's nothing to be sorry for. My child is different and that is perfectly ok because he is truly an amazing human. Please don't ever tell me you're sorry that my child has autism. I don't need sympathy; he needs acceptance.

This journey is beautiful when you begin to unravel who your child is underneath all of the layers of labels that society puts on them. And it's hard for other people to accept that he is still a person, not a diagnosis. He is not autistic, he has autism. His diagnosis does not define him. 

So, I am partially grateful for those who can't see beneath the layers and accept that my child is different, not less. Because those are the people who open my eyes to the amazing friends and family we do have that are nothing but loving, supportive, and include our son in their lives because they see the amazing little boy that he is. And that's what fills my heart; acceptance.  

Bennett Is Going To School!

Today, Cody and I went up to the school that Bennett will be attending this fall for orientation. He will be in an Early Childhood Special Education classroom; so we got to see his classroom and meet his teacher, Miss Katie. She was very nice and I think she will be a great fit with Bennett. He will be going 5 days a week for half days! I seriously can't believe our baby is going to school! It will be so good for him though, so we are very excited. It didn't really hit me until I saw his name on the little birthday chart his teacher had hanging on the wall. Haha! We have to return registration paperwork and schedule his IEP and evaluation and then he can start as soon as he turns 3 in October!

Insurance Isn't Easy

Well, after taking to someone the other day that didn't know what they were talking about, I finally got some answers today. Apparently, our current health insurance will not cover services for autism. We can't get an evaluation or anything. The Affordable Care Act requires insurances companies to acknowledge autism and pay for services.. Unless it's a self-funded plan. Which, of course, is what we have. I have the option of two other plans but one is self-funded (again) and the other doesn't cover habilitation services. So I'm going to try talking to HR at my job this week to see what's up with that.

In the mean time, we applied for Medicaid and now have to wait for that. I'm assuming we will be denied because we already have health insurance; and then we will have to appeal it and hope it doesn't take too long to go through. But we won't go down with a fight! We got this! 

Here Begins Our ASD Journey

I am just finally processing and accepting this all. It's been very hard to talk about and a very sensitive topic for me. Watching other people's children pass Bennett in developments was and still is hard. But I am doing much better with it than I was the last few months. I have accepted that Bennett is just different, but still the same amazing little boy we have had all along. So I am finally ready to open up about all we have been dealing with and share our story and adventure as we move forward.

We started speech for Bennett 6 months ago because he had a very evident speech delay. Our Dr told us to just be patient and that he would eventually talk; but he wasn't making progress. So we reached out to Early On and (in a 6mo nutshell) he hasn't been making the normal development steps he should be with his speech. They started talking about autism about a month ago and I freaked. We ended up seeking a second opinion through the Developmental Clinic. They confirmed the strong suspicion of Bennett being on the autism spectrum. They cannot place formal diagnosis was on children because they only do assessments. I have finally stepped back and opened my eyes and realized, he definitely has strong characteristics of ASD. So we are now starting the process of getting a "medical diagnosis" so that our insurance will help cover the costs of therapy that we will need. We are also starting the transition process out of the Early On speech therapy he is getting because he won't qualify for it after he turns 3. He will start in an early childhood special education classroom once he turns 3 in October (the school requirement). We have a great service coordinator that is helping get everything in line and answer all of our questions.

Honestly, we have no clue what the hell we are doing. Just taking it day by day and trying to do what's best for Bennett so he can learn and develop to the best of his ability. 

I'm scared and have so many questions and have questions that I haven't even thought of yet. It's kind of overwhelming. But we will be just fine! Bennett is so smart and so amazing! We have no doubt that he will do amazing things with the help he needs. We are so fortunate to also have a great support system of friends and family. I don't know what I would do without them! 

So here begins our journey and adventure. Let's do this!