Saturday, October 24, 2015

Dear Senator of the Land Lacking Services: Our Year in Review

*** A letter written to the leadership of Alabama at the request of one of E's former teachers who is fighting to get better services and special education in her state***

Dear Senator,

I have been asked to give you a glimpse into what it is like trying to get services and appropriate education for a child with autism in Montgomery, Alabama. We are a military family and we recently moved away from your state.  We are now living in DC and my son is recovering from our time there.

I say recovering, because our year in Alabama was the worst of our lives.  My son didn’t regress from moving across the country or living in a new house.  He regressed from falling off a cliff into a land of very little services for autistic children with seemingly no priority for special education.  

Upon finding out we were going to be stationed in Alabama, I worried a bit that services would be different.  But we were only going to be there ten months and we would be living near the state’s capital, surely we could make it work.  After all, the alternative would have been to separate our family from my husband for a year—my husband who has already missed major milestones for our children, who has in the past been in a constant deployment cycle, who was coming off of a position in which he worked 14-hour days.  Staying together as a family seemed like the right thing to do.

Before moving I found a center in Prattville where my son could get Occupational and Speech therapy.  I made contact with an ABA provider (Applied Behavior Analysis—the only clinically proven treatment for autism) and got my son on their list and I spoke with Autauga County Schools to see how we would transition from our current state to Alabama/Prattville schools. 

Because I found providers that seemed to meet all of my child’s medical needs, the military approved our move.  They didn’t take into consideration that the county to which we were moving was not following the IDEA and could not provide proper special education for my child.  I was taken aback when the preschool special needs coordinator of Autauga County let me know they did not provide special needs preschool.  She gave me a few numbers to try and said that I would have to find a private preschool that would accept him and then they would bring their services to his school.  Well, there is a reason, Senator, as to why special needs students are federally mandated to receive preschool from the state.  Finding a preschool to accept a severely autistic child still in diapers was next to impossible.  After having preschools hang up on me, fail to return my calls and straight up tell me they would not accept a child with autism I called the county back.  The coordinator then told me that she wasn’t surprised.  She said people there just weren’t very accepting of “special” kids.  You can imagine my shock and anger.  After ten more calls I finally found a church preschool that was willing to accept my son as a student.

So we moved to Alabama in the summer of 2014.  Upon getting there and trying to begin services with all of the contacts we made we hit more roadblocks.  Our son was put on a waitlist for outpatient Occupational and Speech therapy evaluations.  We discovered that the only place that offered these therapies in Prattville had lost their only speech therapist.  We were strung along for months and being told if we wanted to drive to the other side of Montgomery the waitlists there were just as long.  So outpatient speech went on hold.  Our son was 3 at the time and the loss of speech services at a time when we were finally making progress was detrimental to his development.  A few months later they lost their occupational therapist as well.     

We were even more disheartened that the life altering ABA our son was supposed to start receiving was so limited it would hardly be beneficial.  We were told by Tricare that based on our son’s severity we could be getting up to forty hours of therapy a week.  This may seem like overkill but the American Academy of Pediatrics recommends at least 25 hours of ABA a week for an autistic three year old to make successful strides.  There were unfortunately very few providers in our area, not in Prattville, not in Montgomery and virtually no providers set up to offer tiered model services [where therapy is given by both BCBA’s (Board Certified Behavior Analysts) and behavior techs to maximize quantity and quality of care].  We were initially told our son would be getting 10 hours of therapy a week, but we never saw more than 4 a week with the first provider.  He was stretched thin driving from one county to another to provide services and he often would show late or not show at all.   He told us that with no state mandate for health insurance to cover ABA therapy, military families were the only ones covered and therapists had no incentives to practice there.  He said he couldn’t find qualified techs to provide more hours.  Meanwhile I was making more phone calls to see if there were any other ABA providers that could provide better care.  I was given all of the same numbers…all dead ends or waitlists so long we would not be seen until after our 11 month assignment was up.

With outpatient services clearly lacking our last hope was that the school district would be able to provide us with some support.  We were not so fortunate.  Our son with a severe autism diagnosis was given 40 minutes of speech a week (broken up into two sessions), 40 minutes of occupational therapy a week and 40 minutes of “special instruction”.  We had been coming from an IEP where he had 15 hours of school a week and a speech therapist assigned to his classroom who worked with him every day he was there.  A setting in which he was making great strides.  Even in the transitional IEP period Autauga county ignored the laws that state an IEP incoming from another state must be followed until a new one was agreed upon.  Our son having just been diagnosed, we were new to the system and confused.  We pressed for answers, but were told time and time again that funding for special needs preschool was not in the budget.

And our son regressed further into his own world.  I was carrying him in kicking and screaming everyday to a preschool that was not equipped to handle him.  He would try to run out of the classroom, he would sometimes scream nonstop because he couldn’t handle the commotion of the classroom, he would throw chairs and attack his brother (who also attended the school) when other children would cry.  The teachers were caring, they tried their best to accommodate us, but there were so many mornings when I left in tears because going to school had become so traumatic for him.  There were mornings where he would fight getting dressed for an hour and I would throw in the towel because I didn’t have the stamina to put up the fight to get him there.

Without any level of quality behavior therapy, his at home behaviors began to spiral out of control.  We had broken televisions, siblings with bruises and bite marks, and our household was going through a trauma that you can’t begin to imagine.  Our almost four year old (at a hefty and strong 45 pounds) had me in tears on a daily basis.  I worried for my other children’s safety more than anything else.  We knew it was just a matter of time until he put one of them in the hospital or worse.  I called everyone I could think of and no one was of any help.  I called our doctor daily to ask if we were any closer to finding a developmental pediatrician she could refer us to so that we could medicate him and hope to get the aggression under control until we had better therapy options. 

I was put on hold, brushed off, told that they were doing the best they could, told that I could leave yet another voicemail.  None of the pediatricians within 100 miles of the state’s capital were comfortable prescribing psych medication.  I called psychiatrists and psychologists only to leave messages that were never answered.  On one of our worst days, while he was screaming and I was sobbing, the nurse finally came to the phone and finally got us a referral to a psychiatrist that would see him, but we would have to go through another month of hell before we could be seen.

We eventually pulled him from preschool, feeling like we had no other choice.  At our own expense, we found a special needs school that would take him and who had experience with children on the spectrum.  The school was great for him, but we found it too little too late and he was only able to attend for a few months.  My guess is that this school (New Hope Academy) is probably the only reason Autauga County has been able to continue with offering such abysmal special needs education to their youngest students, the ones who need it and can benefit from it the most. 

When I spoke to an advocate they agreed that Autauga County was breaking a great deal of federal mandates, but the only way to get them to change their policies would be to sue the district.  We have acquaintances who are also military who went through a similar ordeal in Montgomery county and had to sue the county, which hardly seemed practical seeing as how we were leaving the following summer.

We bounced from one ABA provider to the next, all promising they could offer us more hours, all not being able to provide services or being able provide a couple hours every few weeks.  About six weeks before our time ended we were able to finally get 8 hours of ABA a week and found speech and occupational therapy 45 minutes away after enduring a long wait list and that was only because I spent 10 hours a week on the phone trying to make it happen.

And then we left.  And now he is getting what he needs and he is recovering from a year that was very hard on all of us.  It is always a fight to get him what he needs, whether it’s a fight with insurance or a fight with the school district, but here we at least have a chance at winning those battles.

In Prattville, Alabama the cards are stacked against children with autism, they have very little hope of accessing the care they need to meet their highest potential in life and sadly many of your residents are unaware that such life changing therapies even exist.  I can’t describe to you how heart wrenching it is to know there is something that could be saving your child’s life and mind and not being able to access it due to funding and availability. 

I think of all of the families still there and how much money the state and federal government will have to spend on those individuals as they age out of a broken system without having been given the tools they need to succeed in life.  I think of friends we have and the tears they have shed for their children knowing they will not get the chance to succeed because legislators in your state and school administrators in your districts do not think their children’s education or quality of life matter.

The Air Force sends their best and brightest officers to Maxwell AFB for Command College and War College.  Unfortunately, it is becoming quite clear that the Montgomery area cannot support families with children with autism due to a lack of services, a lack of qualified providers and profound deficit in its special education offerings (particularly at the early intervention and preschool levels).  We, along with several other families, contacted the Exceptional Family Member Program office at Maxwell—the office that clears families to be stationed there—and informed them of the dyer situation.  We were very adamant that families with children with moderate to severe autism should not be stationed at Maxwell AFB.  Once the EFMP office starts turning down families to be assigned at Maxwell, airmen will have to come to Maxwell without their families, pay for living in two separate locations and their families and morale will suffer.  Not to mention if airmen are coming without their families, they will not be renting out the same caliber of housing, the local economy will not benefit from the spending the family would have been doing in your stores and restaurants.  Having the Air Force colleges located at  Maxwell is not sustainable if the counties surrounding it cannot meet minimum federal standards in providing special education to our children. 
This is our family’s story, but rest assured, EVERYONE who has a child with moderate to severe autism is going through this horrific struggle throughout most of your state.  Even though we are no longer stationed there, my heart aches for that special needs community.  I am hopeful that the leaders of Alabama will step up and pass legislation to mandate autism insurance coverage.  I am hopeful that the leaders of Alabama will acknowledge the shortcomings of their public schools and enforce federal and state laws that are already on the books.  Money set aside for special education should not be allocated into different areas.  Studies have shown spending on autism intervention early on can save states a great deal of money in the long run.  If children are given a strong foundation, they have a better hope of mainstreaming and not needing lifelong support from the state.  Even with that being said, I hope leaders of your state will stop looking at the bottom line and realize these numbers have names, they have faces and they have families.  And you are in a position to help them.

Mandy Farmer  

Thursday, October 22, 2015

When Therapy is Working

I often share our son's successes; the seemingly minor milestones to some that mean so much more to those in the autism community.  Sometimes it's a new food he has started eating.  Sometimes it's a trip to the store without a meltdown.  Sometimes it's saying a full sentence and shocking us all. Always it's the direct result of therapy that's working.  Some of these therapies have recently come under fire for trying to change the core of who our children are.  Some are questioned for their effectiveness and quality.

Unfortunately, we have experienced therapy that doesn't work with a few therapists who just didn't get it.  Thankfully, we have also worked with a lot more therapists who measure their own success by the difference they make in our son's life.  And that difference has been remarkable.

When therapy is working sessions are filled with laughter and smiles.  When therapy is working he is learning and growing but thinks he is playing.

When therapy is working obstacles are overcome and anxiety lessened.  When therapy is working there are calming hugs and deep breaths when things get a little harder.

When therapy is working there may be tears of frustration when he can't quite get it.  But there are definitely tears of joy when he finally does.

When therapy is working he is learning to regulate his senses and in turn is beginning to make sense of the world around him.

When therapy is working the therapist listens to him and watches him to gauge how things are going.  When therapy is working the therapist listens to us, his parents, to know in which direction we should be heading.  And we listen to them to learn the best way to get there.

When therapy is working his siblings no longer fear they will be hurt by him.  They hug him.  They laugh with him.  Because therapy is working he is learning to know how he is feeling and how to cope.  He is learning how to tell us those feelings too.

When therapy is working we are not focused on changing who our child is.  We are focused on giving him everything he needs to be the best version of himself.

When therapy is working they are peeling away the obstacles that try to impede him everyday so that we can see HIM.

When therapy is working he is respected and loved and the results are beautiful.

Sunday, October 11, 2015

The Little Boy Who Never Came Back to T-Ball

A few weeks ago I was able to go solo to my oldest son's second T-Ball practice.  I was elated.  He was happy.  He was excited.  He was so very ready to play.  He talked freely and openly to all of the other kids on his team.  I could tell he was already making friends and I wasn't a bit surprised.  I spoke with the other moms and we talked about kindergarten, elementary schools and neighborhoods.  We all laughed as we watched our kids run to the wrong bases and the coach quickly averting crises by redirecting wayward swings.  I was so caught up in being normal, that I almost missed the little boy who should have been playing but was hiding behind his mother's leg crying.  Even though they were standing right next to all of us other parents, there was a wall between us.  His mother was not enjoying the moment, she flashed us a forced smile, but she was stressed and embarrassed.

My husband had told me that at the first practice there was a quiet little boy who seemed terrified to play or talk to the other kids.  My oldest had talked to him and tried to convince him to come out on the field with the others, but he was immovable.  Sometimes hiding behind his mother.  Sometimes dropping to the ground and crying in protest.  We had talked to our oldest about it and explained that he should keep being nice and keep trying to include that little boy.  Maybe he was new to sports, maybe he had never been around other kids, maybe there was something else going on.

The coach had made an attempt at the first practice to encourage him to come out onto the field; no such attempt was made at the second practice.  One of the other mothers asked him why he wasn't playing on the playground with the other siblings.  He averted his eyes and his mother explained he was actually on the team.  As construction noise buzzed from behind the field, her son covered his ears, plopped on the ground and drew his knees to his chest.  It looked familiar.

That anxious look on his mother's face looked all too familiar too.  That worry in her eyes that at any moment her little boy was going to lose it and mortify her.  I tried to separate from the moms chattering about PTA and picnics.  I reassured her that our oldest was very scared his first time playing a sport and that I was sure her son just needed time to get used to the idea.  She was grateful for the conversation, but not convinced.

That wasn't what I wanted to say to her though.  I wanted to reach over and give her a hug to calm her frazzled nerves.  I wanted to tell her that although I was at the practice beaming over my social butterfly, I had another little boy at home with his daddy who couldn't have handled the noise.  I wanted to tell her about the time we tried gymnastics, and our youngest son completely lost it in the middle of the gym.  How I had to stay right with him for every transition while the other preschoolers walked in line from one room to the next without issue.  We didn't return to gymnastics.

I wanted to tell her how alone I felt at the work picnic when my youngest son wouldn't play on the play ground with the other kids.  And how embarrassed I was as I chased after him and how he would fall to the ground and scream every time I tried to turn him around.

I wanted to tell her it gets better and that even if T-Ball is not in the cards for her son, they will find other things he enjoys beyond measure.  I wanted to tell her even if her son couldn't handle such a big group that with lots of planning and preparing successful smaller group activities could be in their future.

The fear that I was overstepping kept me from saying all of that, but maybe I should have.  The fear that my observations would offend kept me from being open.  I reached out and my son reached out to hers again and asked if he wanted to stand next to him and wait to bat.  He resisted again, but I could tell it meant the world to his mom that we were trying.  She insisted they would keep coming, even if he sat on the sidelines and just watched the other kids.

They never came back.  Nobody asked where they were or what happened.  And even though we knew and we tried harder than most, it wasn't enough and we could have done more.  When did we become a society in which reaching out to someone struggling is out of the norm?  How do we preach inclusion to our kids and yet rarely practice it ourselves?

I fear we are all so preoccupied keeping up the facade of normalcy that we are unable to see the beauty of difference.

I want to tell you a story...

I want to tell you all a story. It’s about a mom who had two babies 12 months apart. And the second baby was different. He was sad or mad...