Sunday, February 23, 2014

That Boy in Your Child's PSR Class


As He passed by, He saw a man blind from birth.  And His disciples asked Him, "Rabbi, who sinned, this man or his parents, that he was born blind?"  Jesus answered, "It was not that this man sinned, or his parents, but that the works of God might be displayed in him."  (John 9:1-3)

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You may have seen him when you drop your child off or pick your child up from PSR.  He's the little boy (or girl, the child could easily be a girl) that catches your eye.  Perhaps the child is moving differently than the other children, with his pacing and flapping hands.  Perhaps this child looks different.  Perhaps he isn't talking.  Perhaps there is something that just gives you pause.

You might notice the other children not playing with this child.  He or she might be off by themselves.  Perhaps there might be a helper nearby.  You can't quite put your finger on it, but this child seems...different.


That child could be mine.

The road to get my son into Mass or PSR at all was a long one.  You see, from birth my child has lagged behind the others.  First, it was in his motor skills; he was late to do everything from crawling to pulling up to walking.  He could not eat the way other children could and he would gag on anything and everything.  Then, the handful of words he had slipped away around the age of 20 months.  Soon, he was non-verbal.

When our son was just past his 2nd birthday, we heard the words from our child's developmental pediatrician that both gave us answers and shook us to our core - "Your son has autism."  We immersed ourselves in the world of therapy, special education, and programming designed to help our son learn the everyday concepts that other children simply picked up without being taught. 

At that moment, God was the furthest thing from my mind.  We were not giving much thought to our son's Sacraments.  After all, if he could not swallow anything beyond a puree without choking, how was he going to celebrate his First Communion?  It seemed so far beyond what we could hope to accomplish.

We were slowly becoming isolated.  The gym class that I had taken Jack to since he was 6 months old had become a harsh reminder of just how far behind Jack really was.  After a parent in that class referred to my son using the "r-word", I scooped my son up crying and never went back.  I began to fear that there was no place for my son in the mainstream world.

It was around that time that I was introduced to Ms. J here at our parish and to the special needs music program - a music class for kids of all abilities.  Jack loves music - music therapy is his favorite part of school and his first words regained came at 32 months old after watching Baby Signing Time - so we decided to give the program a try.  Not long after, Ms. J offered to watch Jack - along with a couple of additional special needs children - during one of the Sunday morning Masses.  We had not been to Mass since before Jack was born.  At first, it was due to his constant vomiting.  Then, it was his sensory issues; he could not sit still or go into a crowded room without screaming.  We gave it a try and - with the help of a wonderful teenage helper to assist Jack - we returned to Mass.

As the end of the summer approached, Ms. J asked us about enrolling Jack in the preschool PSR program.  We were more than skeptical; Jack currently attended preschool in a public preschool special education class, so we weren't sure how much he could learn in PSR or how much of a disruption to the other children he might be.  Ms. J - of course - was not as concerned as I.  She firmly believed in including Jack in his faith and the parish community, and Jack's teenage helper from the summer would join him in PSR to assist him each day.

Slowly, I began to believe that Jack had a place within the parish despite any disabilities or challenges he faced.  He - like all of us - was a child of God.

Jack is now almost 5 years old.  Very slowly, Jack is growing in all of his developmental milestones, but also in his faith.  He knows the word "Rosary" and will lift my Rosary out of my purse to gingerly touch each bead in his hands.  Ms. J made Jack his own Rosary out of fidgets and sensory materials.  This past summer, we have sat with Ms. J and other special needs families in a "Sensory Cry Room", complete with picture schedules and room to move so that Jack can begin to experience the celebration of the Mass.  Each Sunday, when the bells ring three times, Ms. J will announce "Jesus is here!"  To see my child, to hear him try to speak, or to watch the way he seems to move without noticing what is happening, you might think that he is not taking any of the Mass in, but he is.  Now, when he hears the bells, Jack says - "Jesus is here!"

In the wonder that is my autistic little boy, I can certainly agree.  Jesus is here.  The Holy Spirit fills this place.  It is because of what the parish has done for my family - for welcoming my son in particular - that I felt called to serve as a Catechist.  I wanted to give back to the community that opened their arms to my child in spite of his differences.

So, as you look over at my child - the one who looks a little different - take a lesson from one parent to another...my son is a child of God, too.  Have a discussion with your children about how God gives all of us strengths and weaknesses and how God made each of us special.  Encourage your children to reach out to children might seem different and play with them.  Tell your children that just because a child struggles to speak or acts differently it does not mean that they cannot be a great friend.  Remind your children that just as Jesus opened his arms and was accepting to all, so should we be accepting of everyone who might seem a little different.

Tuesday, February 18, 2014

State of Emergency

If you have access to American news at all, you are probably aware of one thing about my beloved Atlanta...we have been in the midst of some wild Winter weather patterns. 

While Atlanta is no stranger to yo-yoing temperatures and whatnot, we are not accustomed to snow and ice. While we look wholly unprepared to the rest of the country, people in other cities need to understand that Atlanta doesn't prepare for winter weather because three years out of every four, we don't have anything for which to prepare. Even in that one year, we will have one major snow event. Certainly not two. 

And certainly not two in two weeks. 

It's just not economical that Atlanta put too much money into Winter weather prep when it isn't needed so often. To show you how Winters can be, the past two weeks have also included temperatures in the 60s and 70s, as well as two minor earthquakes. After all, why not throw a couple of earthquakes into the mix, right?

"SnowJam 2014" - which stranded Jack and I in our car for almost 5 hours with almost no food, almost no water, and no iPad - gave way to what has been called "Clusterflake 2014" just a couple of weeks later. Each storm rained an apocalypse of snow, but mostly ice, on my city. As a result of ice layers so thick and perfect that a Zamboni couldn't have done better - coupled with the rolling hills of Atlanta - created a situation in which we weren't going anywhere for three days. Twice. 

Yeah, whoever is praying for snow out there can stop now. 

There was some fun to be had. Jack - who has never wanted to even come close to snow in the past - was willing to interact with it with mittens on. This was a triumph on two fronts: he both wore his absolutely dreaded gloves and held some snow with his mittened hands. 


We do sensory integration here, folks. All the time. 

And while we were at it - and while Jack's PT is out after having surgery - we incorporated some gross motor target practice with throwing snowballs at the fence. 


Brian tried to get Jack to beam me with a snowball. Jack refused.

Good boy, Jack. You look out for your mama. 

I even found a sled at a local Costco (a rare find in Atlanta!) and tried to introduce it. Jack wasn't interested. 


I got Brian back for his suggestion about the snowball by implying that if he were to try the sled Jack might be more receptive. He tried, but Jack's sled isn't designed for adults. Brian simply flopped when he tried to slide. 

I did not get a picture of that. Darn. 

During our indoor downtime, Jack was also willing to play with Play Doh - a texture that has always been offensive to him. However, he wanted to try it, so we did. 


He may have eaten some of the Play Doh in the process, which surprised me as I can't get him to eat a cookie, but he'll voluntarily eat Play Doh. 


Go figure. 

Though - as you can imagine - having six snow days in two weeks brought its own set of challenges in addition to the triumphs. We went for two weeks with a spotty - if not non-existent - routine and therapy schedule. While this school year has been a challenge and Jack clearly was happy not to go to school each day, he also seemed to suffer for the unpredictability and lack of structure for such a long duration of time. 

Of course, us parents struggled, too. Cabin fever set in for us as we tried to fight boredom and getting on each other's nerves, as all people are wont to do while being trapped indoors for an extended period of time. 

And through this, I had some of my worst blood pressure days yet. The dehydration I suffered from my and Jack's extended stay in our car during SnowJam caused me to spend a day having some decent contractions...and no real way to take care of them. Travel to the hospital would have been dangerous, so I spent the day rehydrating and tracking the contractions, praying that baby Andrew would stay put and that the contractions wouldn't get into the preterm labor stage. They got under control after about a day. 

As with all things, we survived. We never lost power (Thank God!) and we managed to have enough Cheezits to last through the waves of Winter weather. 

And certainly, we learned a little something and will better prepare for the future. I know to trust my gut and not go to therapy or school if the forecast is for bad weather, even if it means that we may just stay home for no real reason. 

Because if this winter has taught me anything, it is this - always be prepared.

And never run out of Cheezits. 

Monday, February 17, 2014

Why Jack - and Georgia - Need Ava's Law

Today we had our quarterly visit with our developmental pediatrician, Dr. DP.  I feel like a broken record sometimes when we see him, not because he asks repeated irrelevant questions, but because I am forced to give the same senseless answers.  Here's what I mean...

Ever since Jack was diagnosed, his "ideal" therapy package would include the following: speech, occupational, and physical therapies, plus a DIR/Floortime home program.  ABA was discussed, then finally pushed as Jack began to have some behavioral challenges that perhaps could benefit from this type of treatment.  Then as Jack's needs increased, we also added a cocktail of different medications into the mix, not as a means of fundamentally changing Jack, but to give him some tools in his toolbox and calm his body down enough to help him learn and feel comfortable.  We weren't going for anything radical; we just want Jack to be the best Jack he can be.

Every time we go to Dr. DP, I get asked if Jack is getting all of the therapy he needs.  Is he getting twice-weekly feeding?  Well, no.  Is he getting twice-weekly speech?  Nope.  Is Jack getting ABA?  Not at all.

Why not?

My answer never changes, and Dr. DP knows exactly why.  It's because even with our primary insurance and Jack's Katie Beckett Deeming Waiver - plus what the school system offers - combined, we don't have insurance coverage for all of Jack's therapy.

Instead, we have to medicate Jack, or try to do therapy ourselves, to fill in the gaps where our insurance company and the state of Georgia feel like it is too expensive to provide my child the care he needs and the care that his physician is ordering as medically necessary. 

And while I don't like to compare autism to cancer or any kind of illness, indulge me for just a second as I make a comparison to any other neurological condition or medical condition that a child might have.  Again, I'm not saying that autism is like any of these things, but just imagine if you - as a parent of a child with diabetes, or cancer, or asthma - were told that the treatment your child needed was not covered by insurance?  Imagine if your insurance company told you that your child's treatment was not their responsibility?  Imagine if your insurer told you that it was the school system's responsibility to deal with your child's needs.  

Imagine calling your insurer because they are about to cut off your child's treatment and crying over the phone, begging them to reconsider.  Now imagine them saying, "There's nothing we can do for your child."

I've been there.  I've been that parent crying into the phone because our insurance company decided to cut off my son's feeding therapy.  I've been the one begging them not to take away something vital to his health - as feeding therapy is - and I've heard them say that they would rather pay for hospitalization and care to treat my son following a choking or aspiration incident.  

They would rather pay at the last minute to keep my son alive rather than give him the skills to eat safely.

Autism parents throughout Georgia have been there, too.

When confronted with the economics of our situation - that providing early intervention and treatment now may lessen Jack's need for intensive therapies and medical services later - the insurers would rather take the chance that they won't be paying for Jack's care at that point anyway.

Why?  Because they are counting on you - as the taxpayers - to foot the bill for all of Jack's care.  You see, since Jack's level of care needs are so great and our insurance would rather not pay for home and community-based services (you will not convince me that hospitalizing my baby boy is better than the care he can get in his parents' home), Jack is dependent on a Katie Beckett Deeming Waiver - or Medicaid - and school therapy to pick up where private insurance denies coverage. You, as taxpayers, fund these programs. I pay an insurance premium for my son, but his coverage is funded by you simply because my insurance company continues to deny treatment. 

Adding ABA and private feeding into the mix - and the out-of-pocket cost - would add several thousand dollars monthly to Jack's care needs that we would have to just write a check for each month.  

We live in a state that won't compel insurers to pay for autism treatment...and my child is autistic.  Just because my child is autistic, he can't get the care he needs.  In a state so concerned with the costs to the individual taxpayer's premium, we would rather pay for Jack - and many, many other autistic children in Georgia - to be on Medicaid than the less than $0.50/month/member (which is what autism insurance reform is expected to cost Georgians) to compel our insurance company to just cover him and his treatment like they would for any other child with any other medical need.  Being disabled and needing therapy should not exclude our children from getting the care they need.

Can you imagine hearing your neighbor say that they do not want to help cover the treatment your children needs simply because of their diagnosis? All because they feel like it is too expensive and not their responsibility? We would be horrified if our neighbors said the same about any other medically covered condition, so why not autism?

This doesn't just affect us. Out of the many, many Georgia families I've met in the past 3 years who are raising a child on the spectrum, how many have I met that have any insurance coverage at all for ABA? Two. Just two. 

That's why Jack - and Georgia - so desperately need Ava's Law.

Ava's Law would require state-regulated health plans to provide coverage for behavioral health treatment - ABA - up to $50,000/year, among other things like therapeutic care. 

And why, Georgia, is it worth your while to see to it that there is an autism insurance mandate - Ava's Law - in Georgia?

Well, ultimately you get the bill for Jack's care in one way or another. You pay for an increased need for Jack to access therapy and special education services in Georgia. You pay for his Medicaid which he needs to cover the gaps in coverage within our private insurance policy. 

Now, wouldn't it be better if the bill was lower? What if access to ABA and the speech/feeding therapy Jack needs now meant that he had a decreased need for those services later? What if that meant that Jack didn't need the same level of special education services in the future, meaning that his education was cheaper for the taxpayers?

And then, what if that therapy early on meant that Jack had the tools to better hold down a job as an adult? That would mean both a decreased dependence on social services, but also that he would be contributing to the community that helped him so...as a taxpayer himself. 

What if?

For Georgia's autistic children, that choice should be available. Families should have the option to provide the care that they and their children's doctors  feel is medically necessary and best for their development.

Insurers are passing the bill on to you, Georgia, more than autism families are. Insurers want you to fear that extra $0.50/month in your premium because they know that they don't want to step up to the plate and be part of the solutions. 

Georgia, don't let them! Every year, Ava's Law gets stuck in a committee while politicians allow misinformation and lobbyists to cloud their good judgment on what is good for Georgia's autistic children. 

We need our voices to be so loud that they cannot help but hear us. 

So please, fellow Georgians, contact your state Senators or Representatives and tell them your stories. Have your family and friends do the same; yes, even grandparents can share their stories about their amazing grandchildren! We need to do this for our kids. 

And if you don't live in Georgia, please share this so that maybe - just maybe - the couple of people you may know who live in Georgia can help spread the word about the need for this legislation. 

Because I would love nothing more than to go to our next appointment and tell Dr. DP for the first time ever, "Yes, Jack is getting the ABA and therapy he needs."


Trust me, Georgia...he's worth every penny of your less than $0.50/month. I promise. He can do anything. 

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Want to learn more about Ava's Law, what it means, and what it actually does - and doesn't - do to insurance coverage and premiums in Georgia, please go check out the Autism Votes state initiatives page (click here) for current news on Ava's Law, or visit Ava's Law's Facebook page (by clicking here)! 

We need your help!

Sunday, February 16, 2014

The Pink Balloon

It was a day like any other. No one really knew just how much that day hurt. I just couldn't share it, not then. But now, maybe I have the strength. 

Jack went to school. Brian went to work. Buses came and went. I had a meeting about adaptive programs through our local parks and recreation department. I needed to run to Costco. 

In the midst of all that, I released a pink balloon. I did it silently, with little fanfare. No pictures. No support. No one but me and my baby girl. 

My due date with Maggie had come and gone. Even as I could feel Andrew squirming in my belly - a little reminder of the good that was to come - my heart couldn't help but ache for the little life lost too soon. The one that should have been there that day in my arms, not in Heaven. 

For a brief moment, I let myself feel whatever. I was sad for my loss - and it was okay that at the moment it was my loss. I was sad for the moments she would miss in life and that I would miss sharing with her. 

And - briefly - I was mad at God...again. I was mad that He took her from us. I was mad that He had brought that pain into our lives. I was mad that He did that to my little girl. 

And - briefly - I was mad at the world. I was mad at the people who said that there had to be a reason for her loss. That her loss was okay because we were now expecting Andrew. Andrew is a blessing, but why could I not have all three of my children?

Her loss was never okay. I loved - and still love - her as much as my living children. It is from a place of love that my emotions get so strong when thinking of her loss. 

As I went about my day, I came back to Jack and to some of these same emotions that I felt acutely around the time of his diagnosis. I remember the anger I felt that God would make my son's life more challenging. I remember the anger I felt anytime I was told that God doesn't give us more than we can handle. Or that Jack was here for a reason, when - my goodness - aren't we all?

And I felt - I had been told - that thinking these thoughts meant that I didn't love my child. 

So, I suppressed them and moved forward, as we all do after getting a diagnosis for our children. I am glad that I did; my life is indeed happier because I let go of that sadness and anger, but it creeps back in from time-to-time. 

It creeps back in when my son paces the bleachers instead of participating during adaptive basketball. It creeps back in when he screams because he doesn't have words or ways to communicate what is troubling him. And it creeps back in when he loses control of himself and I see the pain in his face as he fights a body that he cannot control. 

Does this mean I don't love my son?

Maggie - sweet Maggie who I only hold in my heart and held in my body for a short few months -  has taught me that the answer is no; I ask these questions because I love Jack with every ounce of my soul, just as I ask the same questions for my love for Maggie. Ironically, no one questions if my love for my little girl exists when I ask the hard and emotional questions, but my love for my autistic son is questioned if I do. 

No more. I love my children. My days are filled with more happiness than I could ever imagine, but occasionally the darkness creeps in. Why do I feel angry sometimes? Why do I feel sad? Why do I feel like life has dealt an unfair card? It's not because I want pity or feel cheated, but it is because I love my children so much that I hurt for the hurt they have experienced...whether they feel it that way or not. Sure, Jack knows nothing different than the life he leads, but when I see him struggle, my mother's heart can't help but hurt for his hurt and his struggle. Sure, Maggie is in Heaven, but that doesn't mean that I can't feel so angry and sad that she wasn't given a chance at life with her brothers. 

I just don't let it consume me, but don't fault me for feeling that way, in that brief moment, then releasing a pink balloon or engaging in a moment of just being with my boy - and moving on. 

So, I went to the store and bought a single pink helium balloon and sent it skyward for the birthday that my baby girl never got to experience. As with so many times that I feel sad or angry or feel that life is unfair for any of my children, I did so silently. And I moved forward - silently - and in my own way. 

So I do every time I am blowing bubbles for Jack and I send one up for Maggie to catch. Or when I feel the tears welling up for my boy's struggle and I stop and sit by him and just...be. Each of these moments is a way of recentering myself and moving on. 

And that's okay. Having these thoughts simply defines us as parents. Mothers. Fathers. Family. It is what we do with our thoughts - how we live our lives afterwards, and we must continue living life well for our children - that determines the measure of who we are. 

For a little person who never breathed a single breath, she has taught me so much. 

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While it was weeks ago, I finally can say it here...Happy Birthday, baby girl. Mommy, Daddy, and your big and little brothers miss you so. 

I hope you enjoyed the balloon. As you can see, your brother thinks they're pretty awesome. 


Thursday, February 6, 2014

Opinions on The Biggest Loser (from a Feeding Mom)

Confession time: I used to watch The Biggest Loser. Indeed, I got really into it at one time. Before I got pregnant with Jack, I did Weight Watchers for a while and The Biggest Loser seemed to fit into that lifestyle. 

In reality - and in retrospect - I didn't need Weight Watchers. I'm not being conceited; I've had a "fluffy" figure my whole adult life. If you looked at my BMI, it puts me just in the "overweight" range. However, it is that way no matter how much I run, what I eat, or what I do. And if I told someone my weight, they usually didn't believe it, because I simply didn't look overweight. 

Now I'm pregnant and all bets are off. 

When I was a teenager, I struggled with a distorted body image. For most of my life, I was on the extremely underweight side, particularly for my height. I've always been in the high side of average in terms of height for a woman, and that began when I was a girl. As a result, pediatricians told my parents to load me up with French fries and milkshakes to put some weight on me. It's a good thing I liked both. 

Yet, all women and girls seem to have these double-standards of weight and attractiveness thrown their way. In one breath, a parent can be told to fatten their children up, while in the next a well-meaning family member or adult will tell that same child to suck in their stomach so it doesn't "pooch" out. What messages does that send to the child?

And so it was that I was a 5' 8" high school senior weighing about 105-110 (on a "bad" day, according to me). I wore a size 0. I still thought that my stomach pooched out from the years of it being pointed out to me by various people. I thought that some clothes made me look fat. I could have been covered in French fries and butter and would not have looked fat. In fact, I did not really start puberty until I was 17. I was a rail, but I didn't see it at the time. I saw the flaws. 

It was some time before I saw myself in a different light. It took going to college and having more control over my food choices. (The abundance of college food helped, too.) What helped me develop truly healthy eating habits was discovering a love of good food and just how good food can be if prepared properly at home. 

I gained weight, but I also stopped worrying about weight as much. I began running and exercising, and I felt healthier. I was growing into a new frame as a woman. I had a body that could both carry me through a career field dominated by men and also create and support life.  I had stretch marks to prove that I was someone's home.  My body never looked the same.

And then I had a child with special needs and a feeding disorder.

It was then that I truly realized just how skewed our societal perceptions of health and appearance truly are. Imagine having a child who at age 26 months weighs just as many pounds (he had only just tripled his birth weight). Jack was seeing a pediatric gastroenterologist and was facing exploratory surgery to try to determine if there was an anatomical defect or Eosinophilic Esophagitis causing his severe and constant vomiting.  It was a very scary time for us.  Through it all, I knew that society had gone out into left field when I got the following as a frequent response:

"Well, at least he's not overweight!"

Yes, the general public - including one general pediatrician we saw - seemed to think that it was better that my child was facing a feeding disorder, surgery, and a possible anatomical defect or auto-immune condition in his esophagus than if he was overweight.  Poor health was preferable to being a little chunky.

It was those conversations from which I would walk away - shaking my head - thinking, "What is wrong with us that so many people think this way?"

I admittedly did not watch this season of The Biggest Loser.  I haven't watched in some time due to my personal belief that turning the health of others into a game show - because that's what it is...if it were about health no one would be kicked off or win money - is a dangerous road down which to walk.  Even Michelle Obama - who I truly do admire as a First Lady - seems to go a little extreme with her battle against childhood obesity.  My child's school does mandatory fitness testing of the children and sends home a report once a year detailing their child's BMI, a metric so disconnected from health that it really gives parents nothing but fodder for guilt and desperation.  (To put it in perspective, Tom Cruise's BMI places him in the overweight to obese range.  Yeah, BMI is flawed.)

At the grocery store today, I heard at least 3 different women greet a friend with "You're looking so thin!"  My son's feeding disorder and dysphagia is considered preferable to being overweight.

And then this season's The Biggest Loser winner has lost so much weight that even Jillian Michaels and Bob Harper - two trainers known for really pushing trainees to lose those extra pounds fast - had a look of shock at her appearance...and not in a good way.  Yet, if you saw the winner, Rachel, she was delighted with her weight.  She felt she had regained something.

And I shook my head at it all.  We have become a society in which a woman believes that her worth is contained in a 105-lb., 5' 6" frame and a $250,000 payout.

You see, even though the public has expressed shock and dismay at this season's winner's weight loss, we created this situation.  When a mom chooses to not breastfeed her baby so that she can go back to bodybuilding and regain her figure after birth, we've lost sight of what health is (and this is a true story that someone shared with me).

When moms look at their bellies - bellies which carried children and serve as a place to snuggle up for comfort - with disgust after the changes that accompany motherhood, we've lost sight of what is healthy.

When children get "reports" on their BMI as a normal part of physical education, we have lost sight of what is healthy.

And when we tell a feeding mom that she is lucky that her son isn't overweight while he struggles to keep down food, we've lost sight of what is healthy.

So I beg you - I beg you all - no longer use weight as a compliment.  Don't greet your friends by saying "You've lost weight!"  Don't worry about giving your child 2% milk versus skim.  Don't criticize yourself in front of your children.  Don't let others scare you into thinking your child is unhealthy unless they actually are (get things like cholesterol and health assessments instead of BMI ratings).  Let your kids have the occasional French fry or potato chip.  

And don't envy us because my child is not in any danger of being overweight.  Trust me, you don't want to wish the feeding struggles Jack has faced upon your child or anyone else.  Being overweight is no big deal compared to a feeding disorder.

Embrace your extra pounds and encourage your children to be happy with the body with which they've been blessed.  Remember that your body has done some amazing things, even if there are a few pounds to show for it.

And remember that only we can stop this cycle of misunderstanding what healthy means.


(And this is a picture of me about 20 weeks pregnant with Andrew.  Thin?  Hell, no.  Powerful?  Absolutely.)


The Middle Way

This post comes out of many attempts to wrap my head around the state of the autism community in the past several months.  It came to a head over the past week or so as I've seen both autistics and parents alike silenced by bullies on what is supposedly the "opposing" side.  Bloggers and people I have greatly respected - again, both self-advocates and parents alike - have acted in ways that I find unbecoming to anyone.  

There are no sides.

There are no absolutes.

No one person has rights over someone else.

No one can police how someone should feel.

And in my reflection, I am brought back to my sophomore-level philosophy class from almost 15 years ago...Comparative World Religions.  I took the course as an honors level course and had to write a 15 page paper on a religion other than my own.  I chose Buddhism.

It was in this research that I learned of a Buddhist principle called the "Eight-Fold Path" or the "Middle Way".  The Middle Way is followed not because of fear of some type of supernatural retribution or reward - in other words, it is devoid of the ideas of Heaven or Hell as we know them - and thus it is also devoid of extremism.  Essentially, to follow the Middle Way is to choose a moral path because it is right to do so, and you choose that path outside of the influence of others.  You aren't bullied or coerced into the Middle Way; you walk that path because it is what is right.  In turn, you don't try to convert or bully along the Middle Way.  The journey is not about what the world does, but relies on the premise that your actions alone can bring change.  Living can influence others, not force.

So, why is a Catholic autism mom rattling on about Buddhist philosophy?

Simply put, I had to decide whether to bow out of the autism community - a choice I felt looming in the horizon due to the vitrol I had experienced - or to jump in and wade within the messy waters.  It was then that I realized I didn't have to choose an absolute.  There is a Middle Way.

There are far more wonderful and supportive autistics, self-advocates, and parents out there than there are those who reside on the extremes.  The bullies, quite frankly, are not worth my time.  Nor are they worth yours.  I won't point them out to you; they live on both "sides" of the autism community and will make themselves easily identifiable to all.

I hear - and feel - far too often that fear of angering someone in our community with anything we say.  And so I say this to you:

This will be a safe space for all.

To that end, no one will feel silenced.

Everyone will feel the right to counter someone's opinion if it feels wrong to them in a respectful manner.  As friends, we will remember that more unites us than divides us and that words are often just that.  We will educate each other and understand that none of us - regardless of our neurology - get it right all the time.

For we are parents.

We are autistics.

We are advocates and self-advocates.

We are experts in ourselves and our child(ren), but no one else.

We are all doing our very best.

We will work together to continue to do so.

For we all love.

We all hurt.

We all smile and laugh.

We all cry.

Some of us know the feeling of joy in watching our children do something for the first time.

Some of us know the feeling of accomplishment that comes from doing something for the first time.

Some of us know the pain of watching a child have a seizure.  Or be wheeled away into surgery.  Or undergo a major procedure.

Some of us know what it is like to go through that ourselves.

Some of us have felt that life is unfair, either for ourselves or our loved ones.

Some of us have lost a child.

Some of us have lost someone dear.

Some of us know what it is like to just want an answer.

Some of us are okay with questions.

We have all seen or experienced injustices.

We all know what it is like to fight.

We all want to see a better world for our community.

And we all know that each day is filled with joy and sorrow.  That some days are better than others.  That some days it feels like the sky is crumbling.  And we will be there together to triumph in the good days and to hold each other up through the bad.

And we will acknowledge that it is okay to admit that this parenting gig is tough, because it is for all parents regardless of their children's neurology.  It is okay to admit that being human is tough, regardless of neurology.  The challenges are different, but they are challenges nonetheless. 

It is also okay to admit that joys happen.  We will not diminish the challenges for the successes, nor will we diminish the successes for the challenges.  We recognize that they both coexist in a strange and at times harrowing harmony.

It is those truths that unite us.  It is these things that place us above the bullies, if we choose to walk that Middle Way.  And so that is what we will practice here.  Not Buddhism per say, but walking a road in between the extremes.  By entering here, you are willing to admit that your fellow person - because that is what we all are at our fundamental core...human - is not going to always get it right and neither will you.  So, we won't belittle anyone who stumbles.  We will say that each person has the right - the absolute right - to feel whatever they feel, but it is the words and actions that come forth from that emotion that determine the rightness or wrongness of one's choices.  The feelings in that moment must be valid.

So that is what we will be.  I invite you to join me.  Jack and I are pretty good company on this journey.

Thursday, January 23, 2014

Why Would You Have Another?


Since I went public with my pregnancy with Andrew, I have been surprised - to say the least - at the comments I have heard in response. I think - I hope - that the overwhelming intent is to be compassionate and supportive, yet the comments received don't always have that underlying meaning. This is one of several posts in which I plan to address some of the more common responses I have received to being an expecting special needs mom. 

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People can be nosy. 

Brian and I dated about 7 years before we got married. In that time, I heard one question quite frequently...

When are you getting married?

Well, we did get married in our own time; we were babies in our mid-20s, so we weren't looking to rush into marriage! Then the next question came...

When are you going to start a family?

It wasn't 7 years this time, but after 3 years we had Jack. And it was around the time of Jack's 1st birthday that we got yet another question...

So, when are you going to give Jack a baby brother or sister?

Realistically, we weren't ready for more children at that time. We didn't have a name for Jack's challenges quite yet, and we were still being convinced by doctors that it was something he'd outgrow with time. After a year of dealing with Jack's frequent vomiting, we were tired. We wanted to wait until Jack got a little older before adding to our family. 

Then came Jack's 2nd birthday and his autism diagnosis. And suddenly, the questions just...vanished. No longer did people wonder when we would add to our family. At that point, it was almost just assumed - by most people - that we would not. 

Here's the thing; we're human. We always imagined having 2 children and we wanted Jack to have a sibling. Jack's special needs seemed to be a silly reason to deny him that and our family its completion. 

Yet, when people see us as an autism family with a child diagnosed with multiple special needs, I think people see one thing only - bad genes. I'm not denying that; certainly Jack did get a not-so-great roll of the genetic dice. He's not autistic or hypotonic or anything else for any other reason other than it was what was written in his genetic code. I have to imagine that some of that - but possibly not all - is inherited from Brian and I. 

Thus, I think our decision to have another child produces one of two reactions from other people: 

Why in God's name would you have more kids if others might be at risk of having the same challenges as Jack?

Or...

You are so incredibly brave for having another child knowing that child could also be disabled!

Honestly, I find both responses annoying. Here's why...

For the former, why should having one special needs child mean that I should permanently close up the reproductive shop? Some people quote the commitment (Could you care for two like Jack?!?), or finances (Could you afford it?), or even the burden on social services (You're having another child that MY taxpayer dollars might have to support through special education funding and Medicaid coverage!). 

It's these people who really bother me the most. People ask similar questions of families having multiples, too. I imagine that our answers are similar...we just do it. 

That's right. When people ask me how I manage to raise a child with special needs, I respond that I just do...and that they could as well. There is nothing special about me. I'm not SuperMom. I have good days and bad days. I have days when I phone it in as a Mom and others when I'm a rock star. 

Ditto for finances. I feel like that falls into the category of "it's none of anyone's business". Would that be a question if I was having my second NT child? Of course not. It would be wildly inappropriate for someone to ask that. (And for the record, we provide for our family.)

As for the social services burden, this is such a complex concept. Would Jack (or a second special needs child) need a Medicaid waiver if our private health insurance covered autism treatments? I'm finding that people are opposed to insurance mandates in our area, too. Conversely, having a NT child doesn't preclude them from ever needing social services, either. After all, a child might become disabled one day - though an accident, etc. - or an adult child could be unemployed or underemployed. Nothing is certain when you have children. If we wanted to truly decrease the public burden, wouldn't it be prudent if everyone stopped having children?

See the problem with that kind of thinking? It's easy to single out the disabled - and potentially disabled - as being a burden when the reality is that any of us could present a similar burden one day. 

And then there is the idea of my supposed bravery. Let me dispel any rumors here and now; I'm not a brave person. I'm not a hero. I'm not a martyr or a person to place on a pillar as an example of strength. I'm just a mom. 

Do you hear me, world? I'm only a mom. I'm a mom who really wanted her child to have a sibling. I'm a mom who really wanted two children. I'm a mom who wanted to expand my family. 

And I'm a mom that feels like my son's special needs should not somehow preclude us from doing the things that families do, in our own way. Some families choose to expand. Our family is just like everyone else's, only a little different. 

I also feel like placing a mantle of bravery upon me seems to imply that having a disabled child makes me some kind of saint, as though my child presents as some kind of unique burden that I am so courageous to take on. He's not; he's my child. Raising him is challenging, but he is my child. Raising him makes me no more worthy of praise or reverence than would raising a NT child. It is what we PARENTS do that is extraordinary in and of itself, not the challenges our children might present. I brought him into this world, and being his mom doesn't make me a hero. Being his mom is solely a result of the boundless love I have for him. 

The same would go for Andrew, regardless of his neurology. I care for my kids, regardless of their individual needs. That doesn't make me brave. It makes me a mom. 

It took several years for me to get to this point where I am finally expecting a baby, preparing for delivery, and providing Jack the sibling he so deserves. What I wish is that humanity could understand that this decision was carefully considered, as the decision to have an additional child always should be. 

What I also wish that people could see is that baby Andrew - like all babies born in our world - is a blessing. NT or disabled, he will bring joy to our lives. His worth shouldn't be measured in his potential. His worth should simply be measured in his existence, the love we feel, and the joy he brings...and all human beings bring joy to someone. 

To the people who might wonder then what to say to an expecting special needs mom, try these:

How are you feeling?

You must be so excited!

Or you could always try the old standby...

I'm so happy for you. 

Let's try that, shall we? Let's just be happy for one another.