Sunday, August 18, 2019

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 almost all the time. He did not sleep…ever. He gagged on even pureed baby foods. He could not hold his own bottle. He could not pick up food from his tray even as he got older. He could not crawl at nearly eleven months old. Transition from one room to the next or trying to remove a toy from his hand to bathe him would cause severe meltdowns.

I was perplexed. I had just done this and it was not this way. My husband was on a six month deployment. I could describe the hardships and the differences, but he was not there to see how hard this baby was! I initially thought he was in physical pain or that some physical ailment was making him so miserable all the time. I took him to allergists. I took him to dentists. He had cut four teeth by only 4 months old…was that the problem? I asked the pediatrician to watch videos. I kept telling all of them something was different. I was told by all of the professionals that some babies are just harder.

Fast forward to about 14 months old. He still did not have any words. He did not respond to his name most of the time. He walked in circles a lot and got awfully mad when you stopped his process. He could not go into stores without screaming and bashing his head on the floor or cart.

A doctor finally referred us to Early Intervention. We were told he was behind in speech and fine motor and that he has a lot of sensory issues. One therapist called it SPD (Sensory Processing Disorder), but no one had used the “A” word. In fact, when I questioned professionals about autism I was always told that he made eye contact and therefore was not autistic.

So I latched on to the only terminology I had been given and joined every SPD group there was. Many of these overlapped with autism groups. And some parents pointed out that most of the time SPD is just the precursor to an autism diagnosis. I met a friend in one of these groups and our sons were about the same age. With some of the same struggles.

We had read about the Gluten Free Casein Free diet that was supposed to work miracles. She tried it and kept it going for awhile. I tried it for a few months but saw a miserable kid who seemed even grumpier and was starving all the time. I saw no improvements. She tried to talk me into essential oils. Initially just offered them as a way to help him sleep. The smells made him gag, so I knew that wouldn’t work. Eventually she was telling me I should be rubbing it on his throat before speech therapy or even have him ingest some of it. That did not seem like a good idea to me, but to each their own.

Our kids both got an autism diagnosis. My son was diagnosed as severely autistic. Her son was diagnosed with PDD NOS.

Many in the internet groups I was in were very early on in their journeys. It seemed like everyone was throwing treatments at the wall just to see what stuck. I remember at one point being told that parents might as well try whatever as far as biomedical stuff went…it couldn’t hurt. Many in the groups focused on gut health and heavy metals and a number of other potential causes. There were detox options and probiotics and chelation therapy and hyperbaric chambers. For the most part I just absorbed it all and some of it I read in disbelief. In the meantime, we went to all of the doctor recommended therapies and had him in special needs preschool.

As my friend’s son aged she attributed his development to many of the treatments she had tried on him. My son was progressing too but not at the same rate. Looking back, our kiddos were on very different ends of the spectrum and a comparison of progress was ridiculous.

But I decided to finally listen to her on probiotics. She gave me the number of the guy she used to get the extra strength probiotics that were helping her son.

I called the number and a guy with an accent answered. He explained that he makes all of his probiotics himself and they are 10,000 times stronger than what you can get in the store and doctors and scientists will all be coming to him in time.

I abruptly hung up on him. What was I doing? What harm could it do? Some dude putting a bunch of shit in a bottle in his basement and I’m going to force it down my kid? Yeah, that could do some harm.

No. No. No. It was a pivotal moment for me. For how I viewed autism. For how I viewed my son. It was a moment in which I acknowledged my own desperation and realized that my attitude had to change.

I was told by my “friend” that I was failing my child by not trying everything in my power to recover him. I was told her son was progressing and mine was not because of the choices I was making. I was promptly unfriended when I asked for peer reviewed research for a few of the claims she was making about cause.

And I stopped looking for ways to recover him or heal him or fix him. My goal was never for him to be normal. But I hated seeing him struggle. And I think for many parents of young children on the spectrum the desperation and exhaustion pale in comparison to the pain of watching your baby go through something you cannot fix.

We started seeing changes in our son when we started listening to him and reading him. Even before he had words he would tell us with his behaviors when things were too much. When we really observed him and learned his triggers, his aversions and his reinforcers, we no longer had a child who was miserable all the time. We have some hard days, but we also have some awesome days.

Looking back at pictures and videos of that time I am transported back to a time of desperation. And to the young families currently living it, I cannot promise you it will get better. Everybody’s journey is so different. But I can tell you it will never get better if you are listening to mom groups on the internet more than you are listening to your own child.

Friday, June 7, 2019

When Military Life Doesn’t Work For Your Child With Special Needs

After seven moves in ten years, here we are.  Moving into a neighborhood that we have carefully sought out.  Moving to a city in which we are near family.  Moving to a school district from which our kids will graduate.  And, finally, moving to a state with adult services that can support our special needs child when we are gone.  Our last PCS.

I have heard a great deal being said about special needs families in the military.  I have heard we use EFMP (the Exceptional Family Member Program) to cherry pick assignments.  I have heard we try to bypass EFMP to continue getting needed assignments.  I have heard there are a higher percentage of kids with special needs in the military population, with little explanation or research as to why that is the case.  I have heard my child is a burden on a system lacking medical expertise and funding.  I have heard our service members stay in just for the health insurance our special needs children desperately need.  I have heard our service members get out and use their family as an excuse as to why they couldn’t keep going.

I can’t speak to all of that and I certainly can’t speak for all special needs military families.  I can speak for our family and for myself.   I can say this life has been unnecessarily hard on my special needs child.  Our son is eight and we are going on our fifth school district; our fifth determination of eligibility for special education services and our ninth IEP. 

Over the years we have not used EFMP to get ‘good’ assignments.  We have done everything in our power to keep checking boxes so my husband’s career could progress.  For many of us that means researching areas and finding providers that will work that the EFMP office may not be aware of.  It means sucking it up for a year in a school district that cannot or will not meet your child’s needs or follow federal law.  It may mean living apart for a year, or two, or three so your spouse’s career can keep progressing while your child can keep some semblance of stability and proper care.   It can mean homeschooling when the Air Force’s War College is located in a state ranked the worst in the country for education, and from personal experience the worst in the country for special education.

I think this is typically the point at which a multitude of keyboard warriors say, “Military life clearly doesn’t work for your family’ or “You signed up for this and knew what you were getting in to.”

Did my spouse sign up for the military?  Yes.  Did I marry someone I knew was a career military man?  Yes.  But we did not sign up for this. 

We did not sign up for a disabled child that would need to stay in one state long enough to get on a Medicaid waitlist.  We did not sign up for a child whose educational needs are so significant that some public schools cannot safely accommodate him.  We did not sign up for regression and mania and mental breakdowns with every move.  And my husband, who had already been in the military 16 years when our son was diagnosed severely autistic at three years old, certainly did not sign up for a life in which moves and deployments could set back years of progress for our son.

While we didn’t sign up for a child with special needs, we wouldn’t change it and he blesses us every day.  Naysayers would be right about one thing, though.  Military life (as it currently operates) does not always work for a family like mine.  We have made it work; sometimes to the detriment of our child, when the therapy and psychiatric waitlists are longer than our eleven month assignment.

And for families like ours the choice to stay or go is not always so black and white.  Some of our service members retire well before their careers would be over to give their special needs child a forever home and some certainty.  Some separate for the stability and to be closer to family for help and hope to God they can afford healthcare for their child with preexisting conditions in the civilian world. Some choose to stop checking the boxes and request stabilization, often knowing they are kissing their careers goodbye.  And some keep going, picking up the broken pieces with every move or working ten times harder so their child will thrive.  Military parents of special needs children do not always feel like they can continue serving their country and their children’s needs simultaneously.  Every new assignment and every additional year can feel like a choice against your child.  It can feel like another year or two that they are set back on waitlists for needed services.   

Had my spouse kept climbing the ladder, we looked into the future and saw not one or two more moves, but at least three.  And probably another remote and a possible two years of living apart.  And at least another four years before our son could get on a Medicaid waitlist (lists that are often 5-10 years long). 

I don’t write this for pity or justification, but only to point out a few growing trends.  The military as it currently operates cannot expect the retention for which it aims.  They cannot retain service members if they cannot retain families.  As leadership has families that are younger and younger and as more military children present with special medical and educational needs it may be time to change the model.  Families only have so many moves in them before they say,  “Enough”.  Between school years, staff jobs, command, and back to school, and staff jobs and command (all one to two year assignments) families, even with typically developing children, face issues with continuity of education and stability.

We are done picking up the broken pieces of an incredibly resilient autistic child who has been shattered time and time again by the anxiety and uncertainty of this life.  This is our last military move.

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...