Don't Give Up On Me

Lately I feel like part of being a special needs parent means letting down everyone in my life.  I'm sure to a lot of friends, family and teachers it looks like I just don't care.  There are days when tasks don't get done well or at all.  There are mornings when socks don't match and his hair is not combed because after battling getting dressed, eating something decent and transition meltdowns, the hair was just too much.  I'm sure even to my own children it may seem like on some days I am too worn down to have much left to give.  And some days I guess I am.  But even in my exhaustion and occasional disheartenment, I hope they can see I'm always trying and I hope they don't give up on me.

To the school that sees us come in late nearly half the time and wonders why I don't volunteer or why the constant forms are never signed on time: Don't give up on me.  Please know we are always trying out new methods and new routines to make mornings easier on him.  Please know if life is ever not filled with outpatient appointments and medical forms, I would love to volunteer for my oldest son's parties.  Please know when it comes to forms sent home in the backpack, they're an afterthought, because they have to be.  And when I find them the next morning they go into a stack of papers that I swear I'm working through as quickly as I can.  

To the friends that leave voicemails that go unanswered: Don't give up on me.  Please know it is not that I don't want to talk to you.  It's not that I don't care what's going on in your life.  Knowing that you called or texted, I know that you care and in the spare moments I have when I have enough in me to give you a real conversation I will call you back.  I don't know when that will be, but please don't give up on me.

To my husband when I am often cross and the house is far from perfect: Don't give up on me.  Please know you are often seeing the climax of a trying day in which I tried to hold it all together and by the time you get home is when I usually start to fall apart.  Know that I want to have a better attitude and a better part of me to offer up at the end of the day, but right now I don't.  Please know that I would love more than anything for the house to be picked up, the laundry caught up and dinner to be made (or even prepped), but I know it's a rarity.  I hope one day things will even out a bit, and that it will be less of a rarity.  I'm not giving up on that.

To the family that wishes we could visit more:  Don't give up on me.  There is always the hope that one day traveling will not be such an ordeal.  Maybe one day our son will be able to go on a plane.  Maybe some day we won't worry about regression anytime we stay away from home.  Please don't ever think we do not want to see you, but for now, we do the best we can to do what's best for our family.  I'm not giving up on the hope that someday it will be easier.

To my neurotypical kids who want nothing more than my attention, love, and time: Don't give up on me.  There will always be moments when I say "Not right now,"  but that doesn't mean I don't care.  Please keep showing me your Minecraft worlds and the artwork you brought home from school.  Please know that even when mommy is tapped out for the day, it doesn't mean I do no love you.  It means I need to regroup and reenergize so I that I can be the best mom I can be tomorrow.  On the days your brother takes up the majority of my time and effort, know that you are just as loved and cherished, and that I do my best to take care of each of you based on your different needs.

To my son on the spectrum: Don't give up on me.  There will be days when it may look like I have thrown in the towel.  There will be days when the most recent therapy or medication seems to be helping you so little that my hopelessness will be palpable.  There will be days when I light up at progress, but there will also be days when my inner-cheerleader is not quite as loud.  There will be days when I am overcome with joy and optimistic hope, but there will also be days when the grind of accessing that hope gets to me.  There will be days I am giving you my all because you absolutely need it, but there will also be days when I have nothing left to give.  Please know that through it all, I will never give up on you.  And on the days when I'm barely holding it all together, don't give up on me.

What's Up With Special Needs Families Wanting "All That Special Treatment"?

Last night I had my rather large six year old autistic son in the seat of a rather small cart at the grocery store.  He definitely does not fit in carts as well as he once did and I get a lot of looks and even some comments.  Yesterday, I got two comments from the same person during our short grocery trip.  Initially, the older gentleman said to my son, "You barely fit in there boy."  I just smiled and kept walking, knowing he didn't mean anything by it and thinking he was just trying to make conversation.

 The second time we came across him, he said, "Boy, you got it made.  Enjoy it while you can.  She can't push you around forever."  Once again, I just brushed it off.  I could have told him my son would have much rather been out and free to explore.  I could have told him I would much rather that my son had the impulse control and danger awareness to walk next to my cart and not ride in it.  I could have pointed out that my son has autism and would fit much better if the store had a cart that could accommodate children and adults with any number of special needs.  But I didn't.  Because as much as I have taken it upon myself to raise the banner of autism awareness, sometimes I am tired and do not feel like I owe everyone we encounter a detailed explanation as to why we do the things we do.

Although the man didn't say it, I am sure he thought my son was spoiled or receiving special treatment.  And even though he did not know my son is special needs, there are a number of people in our society that know someone is special needs and cannot stand the "special treatment" that person seemingly receives.  Why does someone with autism need a handicap placard?  Why does an autistic preschooler get free preschool from the state?  Why does the little girl with cerebral palsy get a one to one aide in the classroom?  Why does the little autistic boy get to be in the play if he can't remember the lines?

But to the people that ask these questions, I guess I want you to realize that more than anything we want our children to be treated the same and have the same opportunities as anyone else.  I would have loved it if my son would not have needed special needs preschool from the state, but no private preschools would accept an autistic preschooler with behavior issues who was not potty trained.  And when we lived in a county without public options we were not treated the same, we had no options.  I would love it if my son was not a bolting risk and parking lots presented the same risk to him as they present to any other child, but the truth is he is much more at risk in a parking lot and parking close could save his life.  I would love it if my son could use the same mens bathroom on his own, but he cannot and a family or neutral bathroom is incredibly helpful.  The mothers of grown children in diapers would love it if their children toileted independently, but they need changing tables big enough to fit their children and when they do not have the same access to a table that fits they have to change their large children on public bathroom floors.   We would love it if our children did not need aides in the classroom, but unfortunately many of our children cannot make academic gains or even function without one.  So in order to access the same education, many children need an aide.  We would love it if our kid could be in the play, say his lines, and stay in his place without help, but right now he can't do it on his own.  I would do everything in my power to make it work, but sadly most of the time, our kids are excluded all together rather than being given help or a chance to be in the same play as everyone else.  We would love it if our kids could go on the same field trips and get the same experiences as the rest of their class, but many times they aren't given the option.

So the next time you hear someone proclaiming that our children with special needs should be treated the same as their typical peers tell them you agree that our kids should have the same opportunities and be treated with the same respect as everyone else.  But the way to achieve our children being treated the same is to accept that their most basic needs are genuinely different and everyone has a right to have their needs (not wants) met accordingly.




 

Why Words Are Never Just Words

On Thursday my friend's daughter (a beautiful, fourth grade girl with autism) opened her desk and found this note from a classmate: "Just Kill Yourself Now!!"

Fourth grade.  Nine years old.  Let that sink in.  The school is currently investigating, but what will be done?  Will it be enough?  Will it stop the bullying?

In September, 9-year-old Jackson Grubb of West Virginia killed himself after enduring months of bullying.  Just one month earlier 13-year-old Daniel Fitzpatrick killed himself after documenting all of the instances of bullying in a letter one month prior.  In October, 11-year-old Bethany Thompson killed herself after being bullied for her curly hair and crooked smile.  She survived cancer, but could not survive the bullying she endured daily.
These are just a few cases from the last few months of lives lost to bullying.  A quick internet search reiterates that the number of names and faces and lives and families goes on and on.  In all of the above cases the parents knew.  And in all of these cases they informed the school of the problem, with some having multiple meetings with principals and teachers to advocate for their children.  But it wasn't enough.  And things didn't change.  Ultimately, these parents could not protect their children from the hate, ridicule and the verbal and physical assaults that they faced daily.

Don't tell me bullying is unheard of in our schools today.  Don't tell me it's getting better.  Don't tell me our kids just need to toughen up.  Don't tell me it's not your problem.  Don't tell me that schools are doing everything they can.  It takes more than an assembly.  It takes more than a poster.  It will take proactive teachers and caring administrators to stop an epidemic that is killing our kids.

But the blame does not all fall on the school.  This debasement is not "just kids being kids".  This cruelty and attitude are learned and emulated.  And they are learning it from us.  No child learns to hate or mock differences in a vacuum.  They learn it from their parents.  They learn it from their teachers.  They learn it from our leaders.  They learn it from a society that tells them different is a bad thing and being different makes someone a target.    

It's evident that many kids still think bullying is okay.  The deaths of those who couldn't take it any longer are on our hands.  Collectively, we have to take the blame.  It's on you.  It's on me.  Because the culture of intolerance and exclusion starts at home.  And it has to stop.

To the President-Elect from an Autism Family

Mr. President-Elect:

I don't have to tell you this has been a tumultuous election year.  And I probably don't have to tell you that there are a number of autism families (and people across a number of disability communities) that are concerned about what the next four years will look like for us.  There are a number of reasons why you should care what our community thinks and how we are impacted, but the most obvious reason is the numbers.  One in every 68, Mr. President-Elect, that is how many individuals in our country are diagnosed with autism.  And of course the number of people impacted by autism (the parents, the siblings, the teachers and the professionals) is much, much higher.  The other reason your team needs to recognize and acknowledge the needs of this community: there are some pretty dire needs.  To any leaders who do not think our community is in need of assistance, early intervention, insurance coverage or programs, I implore you: go spend a day in an autism household from sun up to sun down (actually you will probably need to stay a great deal longer than that, because our days never end when the sun goes down and our days always start before the sun comes up).  The experience would be enlightening, to say the least.

Now that I've explained why you should care, here are five ways you can show our community that you do.

1.  Keep and enforce federal education requirements that impact special needs children.

I understand that a number of issues need to be solved at the state level, but as a military family we have lived in three states with our autistic son and let me tell you, the disparity between states is disheartening.  Some states are not even following current IDEA or other federal guidelines and if we strip more federal guidelines from our education system, I fear that disparity will be even worse.  When we lived in Alabama, our son had no access to special needs preschool and because of his challenges due to autism, no private preschools would accept him.  I was told Alabama was breaking the law by not following federal guidelines, but the only way for me to right that wrong was to sue them.  There is very little oversight as to federal guidelines states have to follow regarding special needs and that needs to change.

I understand states' rights, but when states and counties choose to pay their high school football coaches 6 times more than their teachers (no, really), there is cause for concern.  When some states look the other way when children with autism are locked in closets half the day, there needs to be more, not less, done to ensure our public schools all over the country are upholding ethical and effective methods with special needs students.  When our kids cannot tell us what happens at school, we have every right to worry about their education and safety, and we hope you understand why federal regulation matters to us in this regard.  And from a holistic perspective, these things should matter to you too as research has shown that autistic children with access to early intervention and quality early special education have much better likelihood of needing less supports as adults.

2.  Understand why we are fighting for health insurance coverage for life-changing and imperative therapies and fight for it with us.

When our children are first diagnosed with autism we are handed a laundry list of things we MUST do to ensure they have the best chances at the highest quality of life and to become the most productive members of society they can be.  Imagine our surprise when most of these therapies and interventions are not covered by private health insurance.  There have been strides made in this area over the last ten years thanks to the tireless lobbying efforts of Autism Speaks and other organizations to get coverage.  Unfortunately, though, even in some states with now mandated autism therapy coverage, health insurance companies have been able to help shape legislation so they can still legally avoid covering these therapies.

Under the Affordable Care Act, some families have had their first hope of accessing these therapies.  Many families have signed up for much more expensive plans just so they can get this coverage.  While the Affordable Care Act is not perfect and needs some serious changes to stop skyrocketing premiums, please understand that when there is a threat of complete repeal, these families are watching their hope that their autistic children could get help and be successful slip away.

As a military family we have been fortunate to access these therapies when we are stationed at bases in states that have state-mandated coverage.  In states without mandated coverage, there are very few providers and even covered families cannot access care.  While the rest of the insurance industry and the Affordable Care Act are slowly starting to cover more for autism families, our coverage has become more restricted over the last year, with Tricare lowering reimbursement rates for providers and requiring more provider certification than any other insurance company.  This makes military families much less attractive to providers, and many providers (especially in low cost of living areas where rates were hit the hardest) have stopped accepting Tricare patients all together.

As you can see, autism insurance coverage has a long way to go and it matters.  Imagine knowing there were services that would enable your nonverbal child to talk or communicate their wants and needs, to go on public outings that before could not be tolerated, or to be mainstreamed instead of needing special education; imagine knowing those services exist but not being able to access them due to your health insurance plan.  That is the position in which many families in our country find themselves.  And it's heartbreaking.

Just as with the federal education regulation, this isn't just an emotional argument; it's an economical argument.  When we have years of research illustrating what a difference these therapies can make early on and how such therapies give autistic individuals a better chance at being productive members of society, this is clearly something we can all acknowledge is worth the fight and the expense in the long run.

3.  Realize that a huge population of autistic children are aging out of the education system and work with us for autistic adult housing, vocational training and employment placement.

This is an area that needs serious attention.  With a growing population of autistic individuals getting older we need to have a plan in place to ensure their needs are met.  As families, we plan as much as we can, but there is only so much we can do.  And those of us that have saved and put away funds to support our autistic loved ones when we are gone are constantly worried that those funds will keep them from getting disability or placement.  Our son is currently in kindergarten.  At his IEP meeting this year we were handed a pamphlet and told that we need to start getting on adult residential placement lists now if that is a concern because the waitlists are so long and residence centers are so sparse.  Many autism parents and siblings lay awake at night worrying and wondering who will take care of their autistic loved one when they are gone.  We have to have more quality centers, more assisted communities and more programs for adults on the spectrum.  We need to offer incentives and breaks for professionals and investors that can make this happen.

Of course, not all of our autistic loved ones will need adult assisted living arrangements.  But even for those higher functioning individuals their employment rates are incredibly low compared to the national average.  Many in our community want to work and want to contribute to society, but are often not given the chance or opportunity due to their challenges.  Autistic perspectives, work ethic, honesty and talent are an untapped well from which our society needs to start pulling.  We need to start looking at ways to incorporate more autistic individuals into our workforce.  Programs for specific vocational training and placement could start in high school, especially for those not able or not wanting to go into higher education.  Ultimately, such a plan would mean more autistic individuals in the work force and able to provide for themselves.  

4.  Realize that many parents and caregivers of autistic individuals are caregivers 24/7 and cannot work, run errands or rest.  Work with us to find respite and caregiver financial relief solutions.

I know a lot (and I mean A LOT) of autism families with severely autistic children.  Unfortunately, I know very few who have access to or know how to get respite services in their county/state.  Most of the families I know have one parent who stays home, not by choice, but by necessity.  I know families whose children are too severe to be accepted to daycare or for an in home sitter to be qualified to take care of them at a cost that would not break the bank.  Not only can one parent not work, but while many families with chronically ill children qualify for in home nurse care, because our children have a neurological condition that is not an option for us.  There are respite services through some states and some programs, but there is so much red tape and waitlists are so long that very few people know how to access those programs.  We see study after study showing the mental and physical health strain on parents of autistic children, yet there are few options available for us to have any time to take care of ourselves so that we can best take care of our children.

We need to look at more ways the national government can help states help us.  That may be as simple as streamlining the respite application process or in some states it may mean starting a medicaid waiver program so that families of all economic standings can qualify for much needed respite care.  After living in three different states with an autistic child, I can attest that some states will need a nudge to make this a reality for all autism families.

Many of us are saving the government a great deal of money by continuing to care for our disabled children after they age out of the system and not signing over guardianship to the state.  For those of us that choose to take care of our kids well into their adulthood, it should be easier for us to get funds to be our son/daughter's caregiver rather than being forced to put them in a home.  For those who have a severely autistic child and are single parent families, they have to have more options for funding as a caregiver, especially when they try over and over again and do not qualify for disability.  

5. Help us find national solutions for autism wanderings and police relations with autistic populations within our communities.

One of the hardest statistics to swallow as an autism parent are the number of accidental deaths due to wandering.  Many autistic children and adults have no awareness of danger.  Many also have a tendency to bolt or wander.  We as parents do as much as we can to keep our kids safe.  We have special locks, some of us use harnesses, we are hyper-vigilant in public settings and we are very specific about who can watch our children.  Even with all of that, accidents still happen and we cannot plan or prevent every situation, especially as our children get older, bigger, and are sometimes in the care of a school district.  When autistic individuals do get away from their caretakers many of them cannot communicate their name or address, or understand if someone is trying to help them or hurt them.  Around half of all autistic children exhibit wandering behaviors.  And the outcome can be fatal, especially if the child goes near water.  Over 90% of autism wandering deaths last year were due to drowning.

Unfortunately, officials will not issue an Amber Alert for an autistic child gone missing if they have not been kidnapped.  Families have primarily relied on social media and local media to try to get the word out that their child, teen or adult on the spectrum is missing.  Some communities have started their own local alert systems, but with the number of autistic children that go missing daily we need a national alert system for the autism community.

Some local police departments have received grants to distribute trackers, but getting one for your child, like everything for special needs families, is very difficult.  In most cases, your child has to have already gone missing at least once in the past to qualify for one.  But, if we look at the amount of money spent on recovery efforts when autistic individuals go missing (the police, the helicopters, the dive teams, etc), a GPS tracker for every autistic child with wandering tendencies would be less expensive in the long run.

Another safety issue for our community that has recently garnered national attention: encounters with police officers.  Autistic individuals are seven times more likely to have encounters with police than their typical peers.  These encounters are often nerve-wracking or even terrifying for people on the spectrum.  They cannot always verbally express themselves or understand commands.  A sensory meltdown, can also look like a rage and be misinterpreted, especially if the autistic individual is older and bigger.  And because people with autism do not always have the awareness to realize the gravity of the situation, things can be miscommunicated and turn tragic very quickly.

Many police officers have not been around autism enough to have a real understanding of how to handle encounters with people on the spectrum.  These two communities need to be able to trust each other.  More training is needed for police officers when it comes to mental health and neurological disabilities, but we cannot stop there.  I would love to see communities across the country have autism awareness events at which police officers could be exposed to autistic individuals and autistic individuals could be exposed to and try to get more comfortable around police officers.

Notice What Is Missing From This List  

Millions of dollars have been spent on trying to find a cure for autism.  Millions more have been spent trying to prove a link between vaccines and autism.  As an autism mom, I beg you to look at all of the most current (peer-reviewed) research data on these topics and listen to the current professionals in the field.

More than 3.5 million Americans fall somewhere on the autism spectrum and if we can shift the focus and more funding from cure and cause to support and care the future for this community and all of America will be that much brighter.

Why We Let Ourselves Go and Why We Can't

One of the hardest things for me about being a mom is still making time to be a person.  As we put a 1000% of our energy into our kids, we find that we start to lose some of ourselves.  At first, it's a piece of identity or the things we used to like to do that get pushed to the back burner because there simply isn't time.  Maybe before kids we painted, or read, or enjoyed sports, or had a fulfilling career.  Raising littles as a stay at home mom doesn't allow for much of that, not right now anyways.  So we say goodbye or put on hold some of those things and hope one day we will have time again to do some things just for us.  Not only do most of us box in parts of our identity for a later date, but we also pretty much completely give up self-care.  Hygiene slips, hair is usually pulled back, real clothes are shoved to the back of the closet and as long as we can keep going, we rarely see the doctor or make time for own physical and mental well-being.

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As a mom to a child with autism this struggle is exponentially harder.  Even after our kids are in school, there are typically multiple appointments a week for therapies and specialists.  If we aren't in medical appointments with our kids, we are filling out paperwork for IEP meetings or insurance. Not only do we have to be master schedulers to try to find the time to make an appointment for ourselves, but autism parents have the additional stress of finding appropriate childcare.  If we wanted to join a gym, few gym daycares would accept special needs kids.  If we need to go to the dentist or the doctor (or the rare hair appointment), very few sitters are qualified and willing to watch a severely autistic child.  And even if we find someone who is, handling the separation, the meltdown, and the fallout can often be daunting enough that we do not even try.

With all of these obstacles to taking care of yourself as a special needs parent, it seems easier to just let it go.  And sadly that is what most of us do.  We look around and have very little left of ourselves, our health is often deteriorating and many of us are on an emotional roller coaster daily, but keep going.  And we keep going until something gives.  For me (and many other autism moms I know), the wake up call came after finally getting to the routine doctor appointment and realizing that blood counts were off, blood pressure was high, and overall nutrition and health were plummeting.  There is study after study showing that moms (I think most of the studies have looked at moms specifically, but I am sure it applies to parents across the board) of children with autism are more likely to have heart attacks and more likely to have serious health issues.  Much of this is due to the stress, the physical strains of being a full time caregiver, the almost guaranteed lack of sleep, and the constant worry.  Many of us also develop bad eating habits.  We either don't eat at all due to lack of time, eat unhealthy due to convenience, or overeat due to stress.  All in all we simply don't have enough time.  Not enough time to get to the doctor regularly, not enough energy or time for physical activity, and not enough time to destress.

So I made a decision.  I cannot let myself get so worn down that I cannot take care of my kids.  I cannot let myself go to the point I end up in the hospital.  I cannot sacrifice myself to meet their needs, because if I am gone I can't meet their needs.  We have all heard that you cannot pour from an empty cup, so fill your cup first.  I am the first to admit that that is so much easier said than done.  There are still appointments for myself that I have not made and appointments I have not kept, but I am trying.  I joined a gym and go during the small windows of time that all three of my kids are at school.  I would rather nap, but find I actually have more energy if I exercise during those times.  When my husband is home, as much as our son fights the separation from me, I go run or go to the grocery store alone.  On the days when there is no chance of getting out, I force myself to do something for just me, whether it's putting on a Pilate's video or taking an hour to read.  Sometimes that means they get more screen time.  Sometimes it means the dishes don't get done.  But I am slowly discovering that I will never be the best mom I can be if I give all of myself to them.  Since this change I feel better about myself, I am stronger, I have more energy and overall I am a lot happier and more patient with them.

I know not everyone is in the same situation and not everyone has even the small bits of freedom that I now have since our son with autism has started full day school.  And if you would have told me when my kids were 4, 3 and 1 to take some time for myself I would have shot daggers out of my eyes and told you to come babysit.  But I guess I want to encourage all of you in the moments of downtime (however fleeting) that you do get, to choose yourself.  Try to budget for a sitter every once in awhile, find someone who regularly works with special needs kids and work through the separation issues many of our kids have.  Look into respite options offered through your state or your insurance and support organizations that are lobbying for more respite care access and services for families.  When respite or a sitter is not an option, take the five minutes in the car between appointments and put on music you like and enjoy a cup of coffee.  If you're married and your spouse is able, have them take the kids even if they have worked all day...you've worked all day too.  Go for the run.  Get the massage.  Go out with the girls.  Take a bubble bath.  Let a few things around the house go for awhile and save your sanity.  Know that any time you can make for yourself you are doing it for you, but you are doing it for them too.

The SuperMom I Don't Want to Be

Lately, I find myself very tired.  Not just physically tired, but a much deeper emotionally tired that seems impossible to overcome.  As a parent of an autistic child, I am always searching for answers and better ways forward.  At some point, you almost feel as though you are on autopilot.  Everyday schedules filled with therapies, doctors, interventions and intense school drop offs and pick ups become the norm.  This chaotic schedule is peppered with meltdowns, aggression, rigidity, small victories, small setbacks and an emotional roller coaster.  As outsiders look in they watch in amazement at just how convoluted our new normal is.

During a recent particularly hard stretch that has consisted of a lot more bad days than good, I looked through my Facebook feed filled with mostly autism pages and ads for autism related merchandise.  I saw not one, not two, but three shirts advertised that were boasting of the SuperMom Autism Mom.  And it made me mad.

First of all, for the last few years I have felt like anything but a supermom.  I have felt defeated, overwhelmed, sometimes cautiously optimistic, drained, but never super.  I've seen the shirt and heard the mantra that "God found the strongest women and made them Autism Moms"...pfff.  Or how about regular women get handed an extraordinary parenting challenge and are doing their best everyday to rise to that challenge.  Some days we don't get there and there is no switch that flips on magical parenting powers when your kid gets an autism diagnosis.  This shit is hard and you hope everyday that your best is going to be enough.

Secondly, I don't know of one autism mom that wouldn't turn in her cape to get some real support and assistance from professionals, educators, doctors, friends and family.  When someone says "I don't know how you do it all..." most of us think to ourselves, "Well, we have to do it all.  There isn't a choice."  No one is going to hold our hands while we navigate and often fight the school system for proper placement and the right supports.  No therapist is going to be there while he goes into a downward spiral over the weekends and spends hours raging.  No doctor is going to tell us which therapies, when to give up on therapies, which diets, what's medical versus neurological, when to turn to medication, when to give up on a medication, what will insurance cover, what is the responsibility of the school versus private therapies or how to put all of that together and get a holistic picture moving forward.  So we, as parents, do the best we can with the bits and pieces we gather from research, from our kids' teacher, from our doctors, from our online autism community and we map out some semblance of a plan.  And all of that does take a colossal effort, but it shouldn't all fall on us.  We would love to have more direction.  We would love to have someone hold our hand.  We would love for someone to get the 10 professionals who work with our kid in one room with us all at once and discuss our ultimate goals and methods going forward.  But that isn't how it works, even with 1 in 68 kids now on the spectrum autism parents can't just be parents, we have to be case managers and IEP managers and insurance experts because right now there isn't a better way.  If we simply choose not to do any of that, our kid, our families, our life falls apart.

Lastly, autism parents already feel incredibly isolated.  The SuperMom Autism Mom complex sets up the unrealistic expectation that we are supposed to put on a happy face, have unabated optimism and carry our autism awareness torch through it all.  Unlike other parents who have a child with a disability, mental or physical illness, we are torn apart when we vent about the hardships autism presents to our children and to our families.  We all love our children, but are told we have to love their autism too.  While other parents openly discuss hating watching what anxiety, or Sensory Processing Disorder, or OCD, or bipolar disorder does to their child, our autistic children are facing many of the same symptoms and disorders and, yet, I am expected to bury all of that and only talk about my son's amazing memory, unique perspective on the world and his excitement for life.

Don't get me wrong, I love those things and I will celebrate his successes and him as a person until the day I die, but right now our challenges outweigh our celebrations.  Right now I'm wearing long sleeved sweatshirts everyday to avoid his teeth breaking through my skin.  Right now I'm frustrated that he's crumbling inside and not a single professional on our team has the solution to stop the fall.  Right now I'm exhausted from dodging and taking blows and I'm devastated that my other two children are looking on while it happens.  Right now I'm in tears that my baby just had to have a prescription written for an immediate sedative because we've had too many recurrent rages go on for hours.  Right now I'm terrified that as this beautiful boy gets bigger onlookers will misinterpret his sensory overload or short circuiting and will call the police.  Right now I'm scared that during meltdowns he's screaming phrases he doesn't even understand; phrases that had the doctor on the other end of the phone wanting to call a squad and have him admitted.

Right now this is where we are.  And it sucks.  I don't want to put every ounce of energy I have into finding the solutions to get us to a more manageable place.  I don't want to spend all of my time advocating for better treatment.  I don't want to try a new medicine and hope the good outweighs the bad.  I don't want to put up a facade of strength when all I want to do is cry.  But there is no alternative.

I don't want to be SuperMom.  I just want to be his mom.  

To the Boy Who Held My Autistic Son's Hand

This is your first week of kindergarten.  You are nervous and excited.  You are getting into a new routine and meeting new friends.  One of those new friends is my boy.  He comes into your class only for a half hour each day because being in there all day would be too much for him.  He goes to recess with you, but he has a grownup right there with him because sometimes he tries to runaway and he doesn't always understand playground rules.

When I saw the two of you holding hands today, my eyes filled with tears and my heart filled with joy.  I know you don't understand why it means so much to me that my son has a friend.  I know you are happy to play with a boy who is filled with life and laughter.  I won't say thank you for being his friend, because I know you like him for him and not to get a pat on the back.  

I do have a favor to ask you, though.  Right now your days are filled with story time, play time and crafts and you both do pretty well side by side.  But, you see, my son has autism and I know there will come a time when you will start to notice his differences. 

You'll notice the holes in every shirt he has because when he's anxious he chews on his collar.  You'll notice he runs back and forth and flaps his hands when he's excited.  You may start to notice he often talks a little too loudly.  You will start to wonder why he covers his ears when he's surrounded by people.  You will start to notice the stares from other kids when he gets upset about seemingly little things.  You will notice he often asks the same question over and over again.  You will see he often gets stuck on a subject and can't always move on to talk about something else.  You will start to wonder why he rides a different bus or why he spends so much time in another classroom.  You will notice he does different school work and he can't ride a bike.  You will hear other kids making fun of him.  You will then realize he doesn't understand they're mocking him.  These epiphanies won't hit you all at once, but I know they're coming just the same.  

For today, I am going to hold onto and cherish the image of the two of you holding hands, blissfully unaware of your differences.  But as time goes by and you start to notice, I ask with all my heart that you don't let go.     

What are we fighting for?

There's one subject you rarely read about on parenting autism blogs: marriage.  I have stayed away from it too.  I guess that's because it's not only personal, but it would no longer be just my parenting experience I'm sharing.  It involves someone else.  It could be considered airing our dirty laundry for the world to see.  But it's relatable, it's honest and it's a void in the vault of the written autism parenting experience that could probably use some light.

There are always disagreements in a marriage.  As special needs parents there seem to be more.  And with the additional stress that comes with being an autism household, boiling points come faster and cooler heads do not always prevail.  During our latest (heated) argument my husband and I went round and round regarding the effectiveness of a specific therapy.  Are we seeing gains?  Are those gains in the right areas?  Is it worth continuing when problem behaviors are still such a huge part of our days?  Why isn't this helping and what will we try next if it doesn't get his aggression under control?  

I personally feel like we are making gains in this area and we are having less severely aggressive incidents than we had a year ago.  My husband is frustrated we aren't making more gains and that nobody seems to care or understand the effect his aggression has on our everyday lives.  While I'm fighting to press on, he's fighting to press professionals harder.  As we butted heads, raised voices and jabbed rhetorical spears my rational brain became irrational.  Until he said "In a couple years he's going to be bigger and you aren't going to walk away from those blows" and it cut through my angry haze.  And then it hit me, his argument and frustration was stemming from concern.  Concern for our son's well-being, concern for the safety of our other children, and concern for my safety.  When we have these disagreements, no one is fighting to win.  It's so important to remember we are fighting for our child and we ultimately want the same thing.  It's especially important keep that in mind before arguments turn into insults and insults into low-blows.   

 This argument was just the latest in a string of arguments over the last couple years revolving around education setting, therapies, where we live, and how we can most effectively discipline and teach our autistic child.  I could go on and on.  But when I look at that list, I don't get discouraged.  I see two parents who both vehemently love their children.  I see two parents who both care enough to have an opinion about the best way forward, and who will both fight to make it happen.  We don't always agree.  Sometimes we argue.  Sometimes we compromise.  But if our children's health, education and mental state are the things we bicker about the most, I think we're doing something right.  There are a lot less important things we could be fighting for.

Autism Parents: Navigating a Sea of Perpetual Bullshit

There are some places that I expect to have to muddle through outrageous claims and advice about autism.  Facebook is one of those places.  Autism parents are constantly bombarded with advice on how to best help or even "cure" their autistic children.  These opinions are sometimes confined to autism parent support groups in which each parent is giving and getting advice on the best way forward.  Other times articles are posted on our walls by well meaning friends who don't know much about autism, but think that something that helped a friend of a friend or a kid on a talk show might help our kid too.

For parents new to a diagnosis and the world of autism, the amount of advice, recommendations and even condemnations are dizzying.  As we stumble through, some of it we will internalize and work to make useful for our lives and our own children.  Some of it we will blow off as a total quack method or nonsensical voodoo that was most likely thought up by someone trying to make a quick buck.  Some of it we admit could work for others, but we know it's not the best way forward for our child.

Bottom line: we figure it out.  We go through our internet interactions wearing our autism armor, only taking advice from sources we trust and people we have vetted.

Sometimes people with the best intentions get sucked in to pseudoscience and false promises out of sheer desperation.  Because this is a known pitfall, most of us are appreciative of the advice we get from our autism internet support networks, but we leave the big decisions between us (the parents) and our child's doctors, specialists and therapists.

Seems like a legitimate approach, but imagine our surprise when some of the "professionals" with whom we consult turn out to be just as disillusioned as all of those confused internet gurus.  It happens.

A friend of mine with a son on the spectrum who has gone back and forth for a year at a certain medical facility trying to find the right specialist, get an appointment with the specialist, find a way forward for her son with the guidance of a specialist thought her luck was finally changing when she finally got him in to a child psychiatrist.  Up until that time her severely autistic son had seen a pediatric neurologist, ABA therapists, general practitioners, OTs, STs, PTs, etc.  Even with all of that she had been told his regression was again in full swing and therapy would only do so much.  Her concern at this point was treating the mental health comorbidities to help him have more successful days.

Hopeful that this new set of eyes would be helpful in managing medication and recommending a way forward, they went to the appointment.  Much to my friend's shock and dismay, the doc pulled out a book written by Jenny McCarthy and a doctor who should probably have his medical license revoked.  To anyone who doesn't know, McCarthy claimed her child was autistic, started a foundation, headed the anti-vax movement in the states, and later said her child never had autism.  Her foundation advocates healing autism through homeopathic methods and does not recognize autism as a genuine neurological difference.  The doc my friend saw told her to monitor what her child ate and look into chelation therapy (a therapy used to the remove toxins that is not FDA approved and would not be recommended by any doctor in their right mind).  After rolling her jaw up off the floor, my friend left the office, had a good cry that another doctor was no help and moved on.

I think the terrifying part is that this is not an isolated incident.  As healthcare coordinators for our children with autism we are constantly wading through bullshit from professionals and support systems alike and we're tired.  From the general practice doc who won't recognize our child is autistic because they can make eye contact to the psychologist who says regressive autism is a figment of parents' imaginations.  From one psychiatrist who says a medication must be weaned off to another who says the same medication can be used on and off as needed.  From one ABA therapist who says extinction method is the only way to truly stop a bad behavior to another who claims extinction is dangerous and should rarely be used at all.

We get advice from strangers on the foods our kids should or shouldn't be eating.  I've actually had someone tell me red dye was to blame for my child's autism in the middle of a meltdown.  We face the overzealous essential oil consultant who claims by not using oil on our children's throats we are damning them to a life of silence.  We have been told over and over a certain center, a certain regimen, a certain diet, a certain whatever will "recover" our child.  And while we are inundated with advice, most of which we did not even ask for, no one seems to consider that we have done our own research.  We have tried elimination diets.  We have hoped certain therapies would make life easier.  We have already heard about the newest thing you're sending us.  We are consumed by this need to help our child and thus are already in the know of any new treatments, new information or new recommendations that come out.  Another minor detail no one seems to consider: tossing around rhetoric regarding cure and recovery is not only misleading, it's insulting.  Advocating recovery is telling an entire population of autistic people they are currently lost and need recovering.

At the end of the day, we look at our kid and know that we know them better than anyone else.  We make all decisions out of respect and love for them and hope that our regrets will be few.  The best way for us to help our kids is to know them inside and out and take all guidance with a grain of salt, no matter the source. But, my God, we are tired and making all of those decisions would be so much easier if we didn't have to navigate through the constant bullshit thrown at us as we try to do what's right and what works for our kid.  

Rant of a "Non-Working" Special Needs Mom

As I sat down to write this post about why I do not work outside of the home every sentence came off as an apology or a justification.  So I am starting over and I am going to try to make it clear that this is an explanation and an attempt at opening minds to realize that not every stay-at-home mom wants to be a stay-at-home mom.  And that's okay.  This is not a post to pit working moms against stay-at-home moms.  This is my experience.  I am not preaching that one is better or worse or that one is harder or easier.  I also recognize there are a number of stay-at-home dads, this is not written from or including that perspective because that is not my experience.

Now that the PC disclaimer is out of the way, I want to tell you why I am a stay-at-home mom and how much I hate it (pretty sure we aren't allowed to say that).  A few months ago as I was meeting with our son's autism program school liaison I was explaining to her what our typical weekday entails.

It went something like this:

Mondays: In home ABA 8-12, with school drop off for my oldest child at 9, then school drop off for my middle child at 12:30, then pick up for my oldest at 3:30 and pick up for my middle at 3:50, then in home ABA from 4-6.

Tuesday: Repeat Monday

Wednesday: Repeat Monday but add in a 1:00 counseling appointment for our oldest child who is working through a number of special needs sibling and military kid issues.

Thursday: Drop off oldest at school at 8:50, Clinic Occupational Therapy and Speech Therapy at 9:00 and 9:30, In home ABA from 10:15-12:15, school drop off for middle and then school pick ups.

Friday: In home ABA from 7:45-9:45 (drop off oldest in between), OT and ST from 10-11:30, school drop off for middle at 12:30, then school pick ups, then swim class at 5:30.

So there you have our typical week, not including extra curricular for our oldest.  Of course, you have to consider monthly appointments that are added in throughout and god forbid someone gets sick, because then that's another appointment to work in.  And don't forget all of the parent/therapist meetings and parent/teacher meetings and IEP meetings thrown in throughout the month.  Oh, and all of this is done with a 2 year old in tow and typically on about 4-6 hours of sleep.

After going through all of that the response from this female liaison was, "Wow, so you don't work do you?"

Ha!  Now I get it, she meant to say if you are doing all of that you must not have time or the capability to work outside the home, but that isn't what she said.

This rubbed me the wrong way for a few reasons and a recent encounter in which I was asked about my plans for work after my kids are in school has exposed the wound all over again.

First of all, I think we as women have become so hellbent on equal opportunities in the workplace and proving we are just as capable as men, we are quick to judge the women who are focusing all of their energy on running their household and raising their family (for whatever reason) as if they are somehow less than for not trying to have it all.

Secondly, this question ate at me because I want to work.  I have always wanted to work.  There are some women who have never wanted to do anything other than raising their family, which is commendable.  That isn't me.  Growing up I wanted to be an astronaut or a veterinarian.  When asked what I wanted to be I never said a wife or mom.  I don't think many girls did.  We had dreams aside from that.  After growing up I planned to be a professor or an attorney.  After having three kids, I didn't give up on that.  I continued working towards and earned my Master's, but I don't know that it will ever matter.  You see, as a military wife, supporting my family and my husband's career has meant moving every 1-2 years, which makes holding down a professional career of my own nearly impossible, even without the kids.  As it turns out employers aren't quick to hire women whose resumés show a work history with giant gaps or employment in 3 states in 6 years.  Before I had my children I worked 40-50 hours a week outside of the home and the plan was always to go back to that once my kids were in school and once the moves slowed down.

But as that day gets closer, I know it will not happen.  Our son with autism needs the stability of me home.  Managing his care, his therapies, his medications and playing mediator between professionals, making calls to insurance, keeping up with his IEP and school goals has become a full time job.  And that doesn't even take into account the amount of time and energy spent focusing on his needs, his behaviors, his skill deficits... the list goes on and on.  Even after he is in full day school, he will still have weekly outpatient appointments.  I could entrust all of that to a nanny (that I would probably have to pay more than I would make to take on our chaos), but would she know how to keep all three kids safe in a parking lot?  Would she know how to react if he starts self-injuring on the concrete (when you have to hold the two year old with one arm and keep your hand between his head and the pavement with the other)?  Would a nanny know how to get him in the door to school everyday (a ritual that has become a carefully orchestrated dance with a balance of incentive, consequence and calming techniques)?  Would the regression and inevitably increased anxiety be worth it so I can feel like I am doing something more with my life than "just being a mom"?  Probably not.

I know what being a mom to typical children entails, I was that before I was a special needs mom.  And even then, I found staying home with an infant harder and less fulfilling than working outside of the home.  That's just me.  But being a special needs mom is a different ball game.  And, no, it's not a contest, but I think if I had a camera on me day in and day out, the show would be enlightening to the world outside of our autism and special needs communities.

As a special needs mom I have fought more battles and solved more problems before breakfast than most in office jobs have to handle in a week (and I know, because I did that too).  As a special needs mom I get less sleep than most would think is humanly possible, and then face day after demanding day.  As a military spouse I don't have help from family or someone to call when I'm burnt out.  As a special needs mom, I clean up more disgusting messes than a hospital janitor on a daily basis.  As a special needs mom, this is not just a phase or the terrible twos or threes that we have to power through; this is life.  As a military spouse I face single parent ops and absent daddy for deployments and TDYs.  As a special needs mom I deal with the fall out of that separation tenfold.  As a military spouse I face the work and strain of move after move.  As a special needs mom with each move I have to secure new services, ensure appropriate education, sign off on a new IEP, handle regression and prepare a child with severe anxiety for a new life in new surroundings.  Over and over.

As a special needs mom, I balance the needs of two other children who often feel neglected and left out.  And some days I do a miserable job with that.  As a stay-at-home mom, there isn't a raise or a pat on the back for solving a problem or getting something done well.  As a special needs stay-at-home mom, there's no way to gauge how you're doing at getting the job done and most days you feel like a big fucking failure.  As a special needs mom, there is a constant gnawing at your brain about the future and if you are doing what you need to do to have everything in place so that your child will be able to live as independently as possible, or having a plan in place if that is not possible.  As a special needs mom, or any mom for that matter, you don't clock out in the evening or even for sleep.  As a stay-at-home mom you have to write unemployed or "non-working spouse" while filling out paperwork, and I glare at those boxes every time I check them off.  As a special needs mom you don't have the same freedom to vent about parenthood because doing so means you hate your child's disability.

As a stay-at-home mom you don't get to escape domestic life and go feel like you are a part of something bigger beyond your little family.  Don't get me wrong, my family is the most important thing in this world to me, but family is the most important thing in the world to my husband too and, yet, he still gets to have an identity outside of that family.  I do not and maybe never will.  After being out of the work force for so long, even if my husband and I decided to switch roles so I could pursue a career, starting over at this point would have my earning potential at next to nothing and therefore it isn't a feasible or sensible option.

So, no, I do not work outside the home, but I assure you, special needs stay-at-home moms are the hardest working "non-working" moms you will ever meet.




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America, Extremes Are Killing Us.

Polarizing extremism is hurting our country along with those complacent enough to let the extremes divide us.  Before you nod your head in agreement and think “You’re right those (insert party you oppose) are nuts these days…”, think about your own views.  Are they rooted in reason and understanding, are they your agenda or someone else’s?  Are they stances you have thought through or stances that have been passed down to you from preceding generations?  Most of us could benefit from a step back to get some perspective on what is dividing us.

That means you who assumes every black man shot by police is not complying.

That means you who assumes every cop who's had to use his gun was wrong.

That means you who thinks every person proudly waving our country’s flag is a redneck.

That means you who thinks every man in a turban is a terrorist.

That means you who thinks abortion should have no regulations or restrictions.

That means you who thinks guns should have no regulations or restrictions.

That means you who thinks gays don’t deserve the same rights as heterosexuals.

That means you who thinks people aren’t allowed to say they personally disagree with homosexuality.

That means you who thinks #alllivesmatter is racist.

That means you who thinks #blacklivesmatter is racist.

That means you who thinks every Democrat wants to take your guns.

That means you who thinks every Republican wants to control your uterus.

That means you who thinks our government should enforce your religious beliefs.

That means you who thinks every religion but Christianity should be afforded protected speech and practice.

That means you who won’t agree that some on food stamps are lazy.

That means you who thinks everyone on food stamps is lazy.

That means you who thinks all cops are corrupt.

That means you who thinks all cops are standup citizens.

That means you who thinks all Hispanics are illegals.

That means you who disregards some Hispanics are illegals.

That means you who thinks all social programs are a waste.

That means you who won’t admit social programs are being abused.

That means you who thinks all rape victims are liars looking for a payout.

That means you who thinks all rape suspects are automatically guilty.

That means you who thinks all whites are racists.

That means you who won’t admit some whites are racists.

That means you who fights for transgender rights, gay rights, and black rights but won't fight for the rights of those with disabilities.

That means you who thinks a sign on a bathroom door is going to destroy our country or violate your religion.

We must start using REASON.  We must start having EMPATHY.  We must call for JUSTICE AND RESPECT FOR ALL and admit our system is flawed.  We must LESSEN THE RAGE.  We must INCREASE THE UNDERSTANDING.  We must admit we are divided.  We must attempt to rise above it. 

I was the parent who would never medicate my child; until I did.

Before I was a special needs mom there was a lot more black and white. I was guilty of a lot of opinions, some judgment and more ignorance than I would like to admit.  Before I was a special needs mom, there were a lot of "I would never" proclamations. And one such proclamation was "I would never medicate my child."

Of course when I would talk about this I wasn't thinking about abstaining from medication needed to treat a disease or illness. I was talking about the other medicating. The medicating that still has a stigma attached to it. The stigma that perpetuates the idea that parents who medicate their kids are lazy or don't know how to discipline their children. The stigma that has kept me from writing about this decision until now.

Part of me blames that stigma for my bias. Another part of me recognizes that my preconceived notions were based in my own lack of understanding of mental illness. Even after witnessing our son's inability to sleep, hyperactivity, compulsiveness, anxiety, mania and aggression, we were hesitant and scared to talk to the doctor about medication.

Were we closing doors for him? Were we giving up on therapy? Was there any other way? Would meds change who he was? Could they hurt him? Were we taking the easy way out? Was it healthy to continue on without medicating?

With him only sleeping three hours in a 24 hour period most days and with his anxiety so high it was literally crippling him from functioning, we knew we didn't really have a choice. As his aggression spiraled out of control and therapy was so limited, we knew it was the only way to keep everyone safe. And so we chose to medicate.

There is no magic pill. Even after choosing to medicate, he still works so very hard to overcome the challenges autism and its accompanying conditions present him. He still struggles with anxiety and compulsiveness. He still has and progresses in hours of therapy every week. Even after accessing quality therapy, he was struggling with issues therapy could not address.  We didn't give up on therapy. We didn't give up on him.

Medication did not change him; it helped him. I do not regret the choice and hope that he won't either. And looking back at his pained gaze in moments that his anxiety and senses were assaulting him; looking back at manic episodes that had his blood pressure through the roof; looking back at his absent stare due to another 28 hours of continuous wakefulness; my only regret is not helping him sooner.

He still is a very active little boy. But now he can play with his little sister and I don't fear for her safety. He still jumps and flaps and has an unmatched excitement for life. But now he can go to a new place without shutting down or melting down from fear of the unknown. 

We, as parents, would never let a deadly illness or ravaging disease go untreated in our children's little bodies. Why should mental illness be any different? We owe it to them to not brush childhood and adolescent mental illness under the rug. We owe it to them to be honest that it is real and it can be scary and overwhelming. What does it say to them when we choose to hide certain diagnoses and certain conditions? Doesn't it tell them we buy into the stigma too? We owe it to them to show the world mental illness cannot be taboo, we are not ashamed and they shouldn't be either.

Our society's inability to talk about mental illness openly is the reason we lack resources. Our choice not to talk about it is the reason more people take their own lives over asking for help. When we choose not to talk about childhood mental illness we pull a wool over society's eyes while families across our country go through hell and search for answers.

I was a parent who would never talk or write about our son's mental health issues, but now I am because it needs to be said and needs to be heard.

Beyond the Label; We Are More

I am always surprised by how many parents of not-yet and newly diagnosed children seem fearful of the autism label.  Many keep the diagnosis a secret to try to avoid a certain stigma being attached to their child.  Others avoid an evaluation and/or diagnosis at all costs, because they think as long as it is not written down on an official piece of paper they can somehow avoid the reality that their child has autism.

I don't fault these parents.  I think they are trying to do what they think is best for their children.  We ourselves had some hesitation about being open about our son's diagnosis.  For us, it was never a matter of being fearful of getting a diagnosis, but more so a concern for his privacy and the matter of whether or not it was our story to tell.  When we sat down and had that talk after the diagnosis, we agreed that being open about his autism and proud of who he is was our best way forward.

The label for me has always been more about getting him access to the services and education he needs than anything else.  A diagnosis, in a way, was a relief.  It gave us a plan.  It gave us a way forward and it gave us insight into the best ways to help him achieve his highest potential.

I use both phrases when talking about my son's autism.  I sometimes say he is autistic.  I sometimes say he has autism.  Both to me are labels.  Labels that do not scare me.  Labels that make me proud.  Labels I hope that one day make him feel proud, and not ashamed.

Clearly, I don't mind that my child is labeled.  But I do mind when people can't see beyond that label.  There are so many areas of our lives that have become all about that diagnosis.  I fear that the doctors, and teachers, and therapists working with him will not always understand he is an individual, not a diagnosis.  He is a person, not a statistic.  He is autistic, but he is also just a boy.  He is funny.  He is strong.  He likes to snuggle.  He likes to jump.  Autism may be part of him, but it is not all of him.

And as he enters kindergarten next year, I can only hope that his teacher will take the time to get to know him--not just the codes on his IEP.  I can only hope that she will take the time to let his personality shine through, just as any kindergarten teacher would get to know any new student.  I appreciate that his teacher will be aware of his challenges and struggles from the beginning, but I hope she is also aware that he has strengths and brilliance.  Teachers would never make assumptions about typical students they have never met.  Why should it be any different for our kids?

You may know the label, but don't assume that means you know my child.

Parents across the country asked our autistic children to describe themselves.  And even in houses where autism is talked about openly, all of our kids found a lot of other words to tell the world how they see themselves.  In fact, most of our kids didn't even mention autism; proving that they know they are so much more than any label.  They are individuals; each one with unique characteristics and strengths.  

Autistic may describe them, but autism does not define them.  This is them.  They are boys.  They are girls.  They are more than a label. 

Oscar from Letters From a Spectrum Mom
Our Inspiration 

Jojo from Jojo's World

Maddox from Maddox's Autism Chronicles

Jaxon

Summer from Summer All Year Round

Jake

                                                                 

Oliver from Jojo's world

Noah

Autism and Swimming; Confronting an Epidemic

As a parent of three kids 6 and under (one of them having autism), summer activities involving water have made me uncomfortable for years. Unless it was a splash pad or a pool with only a foot of water we pretty much just avoided it. Even in a few inches of water in the bathtub I would hover within arm’s reach and give constant reminders, “Don’t put your face by the water” or “No standing you could slip.” As we started to see how much our son with autism enjoyed the water we knew spending a summer avoiding pools and lakes was doing him a disservice. It was doing them all a disservice but with three of them and two of us we felt pretty limited. Compounding my fear of my autistic son drowning were the staggering statistics of how many in the autism community lose their lives to water. In 2012, the National Autism Association reported that accidental drowning accounted for 91% of the total U.S. deaths reported in children with an Autism Spectrum Disorder ages 14 and younger subsequent to wandering/elopement. With the many deaths in recent years due to drowning, I assume that percentage has only grown.

I knew we needed swim classes for all of the kids, but I also knew that finding someone to work with and be successful teaching a kiddo with autism would be difficult, if not impossible. We recently moved to the DC area and I heard about Sensory Swim, a program specifically for autistic and sensory challenged individuals. When I spoke on the phone with Andrew and Mary (Sensory Swim’s owners and founders) I asked about a million questions and tried to calm my nerves by understanding their methodology and safety measures. I found out they both had a background in special education and after seeing a demand and need for effective swim classes for our community had decided to apply their knowledge and skill sets to teach our kids how to swim.

We signed up and took the plunge. I watched as my typical son took typical swim lessons alongside our son with autism and was pleasantly surprised by how different Sensory Swim’s methods were from regular private instruction. They started in the deep end and let him get a feel for treading water. With only a few feet between the two of them they would propel him into the direction of the other so he could get the feel of moving forward without being able to touch the bottom. They didn’t try to explain to him how to hold his breath or how to kick his legs. They SHOWED him everything they expected him to do. And to keep him motivated and working each time they would lift him up high and spin him or make huge waves to make him laugh. He would get positive reinforcement every time he imitated what they showed him.

I watched my older son and realized none of the methods the typical swim school was using with him would have worked for our autistic kiddo. He would not have understood the demands put on him and he would have not had enough motivation or silliness to stay engaged. Seeing how hands on Sensory Swim was and how well he responded, a lot of my fear dissipated. And although I know we have a ways to go, seeing him put his head under water without anxiety and watching him know how to hold his breath now are BIG first steps. Watching him get about six feet now doggy paddling on his own, I am hopeful that the goal of him swimming and staying safe if he were to get in the water on his own is within reach.

Andrew with another student.

And as I have watched these successes and milestones and just how happy he is in the water, part of me is aching. We need more. We need access. We need every autistic child and adult in this country to have the chance to learn how to swim. So I sat down with Sensory Swim’s founders and talked to them about how we could make it a reality and what parents can do if they do not have access to a program designed for autistic, nonverbal, and/or sensory challenged kids.

“The most important thing we do is gain the child’s trust. We get that connection with them,” Andrew explained. “About seventy percent of our students have been instructed somewhere else before us and have this traumatic experience of being forced below water before they were ready. It takes a lot for us to undo that trauma.”

Although some organizations are pushing for funding for swimming lessons for autistic children Sensory Swim’s concern is that most of the money is going to swim schools not necessarily trained in how to handle or actually teach special needs kids. They recounted a number of conversations they have had with instructors at other swim schools in which they were shocked to discover the goal was never to get the child to learn how to swim. These programs admitted they do not know how to communicate to our kids to teach them so they just let them enjoy the water and learning to swim is rarely the outcome.

As the demand for Sensory Swim lessons increases, Andrew and Mary have continued traveling and teaching teachers their effective methods. They want more schools to be focused on actually teaching our kids how to swim. “We will tell swim schools and teachers and parents all of our methods all day long. It’s not a big secret. We would be happy if effective special need swim lessons were all over the country as long as they worked.” For now, Sensory Swim is only available in Maryland and Virginia and they travel to each location on different days of the week. They are looking into expanding and hiring on additional teachers, while ensuring safety, quality and effectiveness remain the highest priorities in their program.

Because not everyone has access to effective special needs swim lessons, I asked Mary how she felt was the best way to overcome the child’s fear and for tips on how parents can best teach their autistic children how to swim. She explained, “Whether you are the parent or the swim teacher you have to validate their fear and anxiety. It is real. Acknowledge that it is scary to go under water, but say we can do it together. You just have to make the whole thing a shared experience. Get down to their level in the pool and try to experience it as they are experiencing it.”

She also emphasized the importance of teaching all safety-focused things first. Teach them to get to the side of the pool no matter what their method looks like. At that point it doesn’t matter if they are using correct strokes or whether or not they have the correct form. Let them sit on your knee and reach and propel towards the wall, allowing for more distance each time as they are ready.

One of the biggest obstacles to our children learning how to swim is our own fear and anxiety about our kids’ safety around water. That anxiety often transfers to the child and their apprehension to get into the water can be that much harder to get past. If we never expose them to water in a controlled environment, they will be clueless as to the dangers of water and what to do if, God forbid, they ever wander off and come upon a body of water or a pool by themselves.

We as a community are seriously failing at keeping our kids safe from wandering deaths. The dangers of elopement will always be there for many of our families, but getting past our own water anxiety as parents and making a commitment to teach all of our kids to swim can eliminate one risk that is killing so many.