When I think back to turning 50, I was pretty comfortable with my life. My professional career had been fulfilling, and my two sons had finished college and were off following their own dreams. Consulting part time was an option, but I really wasn’t looking for too much in terms of a professional challenge.
No, I was ready to relax a little.
LEND opens a door
Until one day, I was speaking to a friend who told me about the LEND program; Leadership Education in Neurodevelopmental and Related Disabilities. She described it as a wonderful opportunity to attend a graduate level training program with others committed to leadership in the field.
So I decided to check it out.
What I realized is even though I had started my own nonprofit, I learned through trial and error only. Going back to school would offer a whole new dimension of learning.
After doing some more research, I came to the realization that the program sounded wonderful and I really wanted to be accepted.
The good news was even though my undergraduate grades were not impressive, (college in the 70s,what can I say?), perhaps they thought I could bring credible work experience to the group, and I was accepted into the program.
I was in and I was nervous.
The impact on my life
Over the next two years I was the class nerd. I relished my time in the classroom, enjoying the opportunity to research and write on topics of interest and eventually completing my masters at Suffolk University. It was truly a life changing experience.
I guess in many ways it was what I expected in terms of the academic challenges, yet what I hadn’t envisioned was the intimacy in friendships that would be made both with my professors and colleagues. We learned so much from each other and I will be forever grateful for the impact they made on my life.
Today, I am honored to teach in the LEND program, which is an opportunity I never imagined. I only hope that I will have the same positive impact on my students in the years to come.
This month, join us to hear from other alumni and students in LEND as they share their own experiences. Who knows. With applications now being accepted, you may find yourself in one of our classrooms this fall.
I first “met” Lou Melgarejo when someone forwarded me a link to his YouTube video about his daughter, Bianca and their journey into the world of autism. As a parent, I struggled mightily over the years every time someone said “tell me about your daughter?”, “what is autism?”, “why is it so hard for you?”, and other basic questions. Basic questions which I never felt I could adequately answer.Lou’s video answers these – clearly, powerfully, poignantly. So now, instead of trying to answer these questions, I just send them the “Fixing” Autism – YouTubelink.
I later had the pleasure of meeting Lou in person, and began to follow his blog. Amongst the wonderful posts, is one called “Dad vs. Man”. The title is self-explanatory, but it’s a topic that’s infrequently discussed, and one I know many fathers struggle with.
We are honored that Lou has shared this. We welcome your comments, and invite you to forward this to fathers, mothers, grandparents, and anyone who loves someone with autism. Thank you Lou.
Being a dad doesn’t mean you can’t be a man. When you have a child with special needs, they need their dads to be as involved as possible. Being a dad makes you a BETTER man.
Some men feel that the two are mutually exclusive. Scratch that. Some women feel that way too, so I guess it is some PEOPLE feel that being a dad means you can’t be a man.
Why do I say this? I say this because to me it is almost like there is an opinion out there that a guy has to turn in his “Man Card” in order to be fully vested in their kids. By that I mean that they take part in and are an active participant in ALL of the day to day routines of their kid’s lives that their schedule allows.
It is a disturbing phenomenon that I see firsthand almost every day. In the vast majority of events, therapies and functions that I attend, I am one of the only guys if not the only man in the room. At first I chalked it up to my unusual work schedule; my days off are in the middle of the week which allow me to be really active in Bianca’s week. But I work nights when I do work, so I am able to participate in weekend activities as well… and again, I am in the minority by a LONG shot.
So how do we get more dads involved? What is it that allows some men the ability to be fully participatory, and others stand-offish providers? I am sure Freud would have a lot to say on that subject. I wish I could tell you why it is that I look at my kids and want to do everything with them, while other guys can’t wait to get out of the house and escape. All I can do is re-assure the other men out there that being an involved dad does not make you any less of a man.
Sometime I fear that when a person is moved by one of my blogs or videos, they build up a false impression of who I am and almost emasculate me. I think that is a natural reaction but I don’t want to portray myself as something I am not. Maybe by talking a little bit about who I am as an Autism Dad, other men may feel comfortable enough to become more active in their child’s life.
So let me tell you about myself. I am fiercely family-centric. I put my family before anything, but I also make certain that I allow time for myself. I have the incredible good fortune of working in sports entertainment television. So when I go to work, I take the “Autism Dad” hat off and go into full sports geek mode. I enjoy testosterone heavy debauchery. I love going out with my guy pals and doing guy things just like any other man. I have a horrible fantasy football team with a funny, but dirty name. We were winless this year… thanks Jamaal Charles! I am so glad I decided not to keep Frank Gore this year to go with one of the few every down backs in the NFL.
I enjoy going to bars with the guys, but I don’t drink like I used to when I didn’t have responsibilities or a 45 minute drive back home from where we would hang out. I love dirty comedians and humor that walks the edge and makes me squirm. I have a thick skin and can understand the difference between a joke and an insult. I am a HUGE Howard Stern fan and have listened to probably every show in its entirety for close to 15 years.
I make time for my heathen activities, but it is in moderation. You have to have balance, but when it comes to balancing a family, the scale has to tip largely in the families favor. I do nothing without thinking of my family first. They are what is important and help to define me as a human being and keep me grounded. Also, they NEED me.
Particularly when talking about kids on the spectrum, an active father is VITAL in their development. We are talking about kids that usually have socialization problems so they need every interaction they can get at any given moment. They need help in pulling themselves out of their isolation that is ASD.
I was never a great hitter in baseball, so I have no clue what it is like to hit a homerun. I have never experienced dunking a basketball. I can only imagine that being able to do either one of those feats makes you feel like a king. You know what gives me that same kind of juice? Receiving an unsolicited hug from my daughter, Bianca signing that she wants to eat or when she REALLY wants a particular thing to eat… asking for it, my daughter using the toilet and signing the word “potty”, and on the rare occasion that I get an “I love you” out of Bianca… forget about it. That is like winning the Super Bowl.
I know having a kid with special needs is tough on a man. We have to fight a million urges every day to put things right. We put enormous amounts of pressure on ourselves to fix things that we perceive to not be right. We deal with stress in a very different way than women. We aren’t talkative by nature and when we do talk to our other guy friends; it is rarely about something as deep as the tougher moments of raising a kid with autism or the like. We usually talk about (stand by for a shocker ladies) sports, women, more sports, jokes, entertainment, and did I say women and sports? So basically our conversations are knuckle-dragging, not-so-intellectual type stuff. We rarely vent our concerns and frustrations about the real challenges that we face in life. When I do bring something up about an issue or challenge to one of my closer friends, it is usually in a less than politically correct manner. We have the kind of relationship where subtext is completely understood, so I can joke about my life with him in ways that I can with nobody else. That is a vital relationship and helps to keep me sane.
If the man is not a “fixer” he might be a “provider type”. These dads are the types of guys that feel that the solution to the problem is to just work themselves to death providing for the family. This is good for the family from an economic perspective, but I have found in my observations that it is the least rewarding or impactful in terms of bonding with your children. Kids don’t really get that “daddy is gone because he loves you”. Kids just think that all the stuff in their house was free anyway. At least that is what they think during the most important years of development. Even if you try to explain the importance of money and how it is gained and used, if you were to ask your child would he/she rather have daddy go to work or stay home and play with them, I guarantee you the vast majority of the kids are going to choose the quality time with dad.
To be fair, many dads caught in the provider role share that sentiment. The problem is that they feel trapped and are convinced that the time away from the family and earing the paycheck are for the greater good of the familial unit.
I beg to differ.
Men are not the only ones responsible for perpetuating the checked-out dad. Wives have a bit to do with it as well. Whether it is that the wife feels like there is not an open line of communication to tell the father that she would like him to be more involved, or she thinks he has too much on his plate providing for the family, or she just enjoys cashing in the checks, many moms just accept the status quo as is without complaint. I encourage women to talk to their husbands and express your concerns. It may be difficult for the guy to understand, he may be defensive but if you perceive that he is not engaged enough in your child’s life you owe it not just to the child to inform his/her father… you owe it to the father as well.
One way not to approach your man if you feel he needs to be more engaged is by comparing him to dads around you that you see as being more vested. I am aware of it happening with other couples that we have interactions with and this does not go over well. In fact, it usually results in the man distancing himself even more. Just tell him what YOU need and what you believe your child needs. Honesty is key.
I really hope that something clicks and I start to see more men at functions and taking their kids to therapy. It is going to be 2012 and I think we can get involved without it hurting our street cred. Plus it would be nice to be able to vent to another guy about how much Jamaal Charles’ torn ACL stinks in a keeper league, how funny Mike Judge was on the Stern Show, or who I would rather be stuck on a deserted island with for all of eternity, Salma Hayek or Sofia Vergara.
“My Child was diagnosed with autism yesterday. The clinic gave me a huge packet of information. The resource specialist told me the first call I should make was to your Resource Center to figure out my coverage.”
At the Autism Insurance Resource Center, this is a typical call. And while our mission is to provide information to help families understand their insurance, sometimes what I really want to do is reach through the phone and just give them a hug. I want them to know that, even though it might have taken all their strength this morning just to get out of bed and put one foot in front of the other, there’s so much to be hopeful for, and it gets easier. Really, it does.
So after I’ve helped them navigate their insurance, I tell them that I’m a Mom who’s been there. I know what they’re going through. And I tell them that, if they have one ounce of bandwidth left, they might want to check out Diary of a Mom, by Jess Wilson.
So for our first blog of this month, I’m delighted that Jess has shared one of her many brilliant posts “Welcome to the Club”. Because in my opinion, no one says it better than she does. Thank you, Jess.
May 1, 2009
My dear friend,
I am so sorry for your pain.
Don’t worry; no one else sees it, I promise. To the rest of the world, you’re fine. But when you’ve been there, you can’t miss it.
I see it in your eyes. That awful, combustible mixture of heart-wrenching pain and abject fear. God, I remember the fear.
I see it in the weight of that invisible cloak that you wear. I remember the coarseness of its fabric on my skin. Like raw wool in the middle of the desert. You see, it was mine for a time.
I never would have wanted to pass it on to you, my love. I remember so well suffocating under the weight of it, struggling for breath, fighting to throw it off while wrapping myself in its awful warmth, clutching its worn edges for dear life.
I know that it feels like it’s permanent, fixed. But one day down the line you will wake up and find that you’ve left it next to the bed. Eventually, you’ll hang it in the closet. You’ll visit it now and then. You’ll try it on for size. You’ll run your fingers over the fabric and remember when you lived in it, when it was constant, when you couldn’t take it off and leave it behind. But soon days will go by before you wear it again, then weeks, then months.
I know you are staring down what looks to be an impossibly steep learning curve. I know it looks like an immovable mountain. It is not. I know you don’t believe me, but step by step you will climb until suddenly, without warning, you will look down. You will see how far you’ve come. You’ll breathe. I promise. You might even be able to take in the view.
You will doubt yourself. You won’t trust your instincts right away. You will be afraid that you don’t have the capacity to be what your baby will need you to be. Worse, you’ll think that you don’t even know what she needs you to be. You do. I promise. You will.
When you became a mother, you held that tiny baby girl in your arms and in an instant, she filled your heart. You were overwhelmed with love. The kind of love you never expected. The kind that knocks the wind out of you. The kind of all-encompassing love that you think couldn’t possibly leave room for any other. But it did.
When your son was born, you looked into those big blue eyes and he crawled right into your heart. He made room for himself, didn’t he? He carved out a space all his own. Suddenly your heart was just bigger. And then again when your youngest was born. She made herself right at home there too.
That’s how it happens. When you need capacity you find it. Your heart expands. It just does. It’s elastic. I promise.
You are so much stronger than you think you are. Trust me. I know you. Hell, I am you.
You will find people in your life who get it and some that don’t. You’ll find some that want to get it and some that never will. You’ll find a closeness with people you never thought you had anything in common with. You’ll find comfort and relief with friends who speak your new language. You’ll find your village.
You’ll change. One day you’ll notice a shift. You’ll realize that certain words have dropped out of your lexicon. The ones you hadn’t ever thought could be hurtful. Dude, that’s retarded. Never again. You won’t laugh at vulnerability. You’ll see the world through a lens of sensitivity. The people around you will notice. You’ll change them too.
You will learn to ask for help. You’ll have to. It won’t be easy. You’ll forget sometimes. Life will remind you.
You will read more than you can process. You’ll buy books that you can’t handle reading. You’ll feel guilty that they’re sitting by the side of the bed unopened. Take small bites. The information isn’t going anywhere. Let your heart heal. It will. Breathe. You can.
You will blame yourself. You’ll think you missed signs you should have seen. You’ll be convinced that you should have known. That you should have somehow gotten help earlier. You couldn’t have known. Don’t let yourself live there for long.
You will dig deep and find reserves of energy you never would have believed you had. You will run on adrenaline and crash into dreamless sleep. But you will come through it. I swear, you will. You will find a rhythm.
You will neglect yourself. You will suddenly realize that you haven’t stopped moving. You’ve missed the gym. You’ve taken care of everyone but you. You will forget how important it is to take care of yourself. Listen to me. If you hear nothing else, hear this. You MUST take care of yourself. You are no use to anyone unless you are healthy. I mean that holistically, my friend. HEALTHY. Nourished, rested, soul-fed. Your children deserve that example.
A friend will force you to take a walk. You will go outside. You will look at the sky. Follow the clouds upward. Try to find where they end. You’ll need that. You’ll need the air. You’ll need to remember how small we all really are.
You will question your faith. Or find it. Maybe both.
You will never, ever take progress for granted. Every milestone met, no matter what the timing, will be cause for celebration. Every baby step will be a quantum leap. You will find the people who understand that. You will revel in their support and love and shared excitement.
You will encounter people who care for your child in ways that restore your faith in humanity. You will cherish the teachers and therapists and caregivers who see past your child’s challenges and who truly understand her strengths. They will feel like family.
You will examine and re-examine every one of your own insecurities. You will recognize some of your child’s challenges as your own. You will get to know yourself as you get to know your child. You will look to the tools you have used to mitigate your own challenges. You will share them. You will both be better for it.
You will come to understand that there are gifts in all of this. Tolerance, compassion, understanding. Precious, life altering gifts.
You will worry about your other children. You will feel like you’re not giving them enough time. You will find the time. Yes, you will. No, really. You will. You will discover that the time that means something to them is not big. It’s not a trip to the circus. It doesn’t involve planning. It’s free. You will forget the dog and pony shows. Instead, you will find fifteen minutes before bed. You will close the door. You will sit on the floor. You’ll play Barbies with your daughter or Legos with your son. You’ll talk. You’ll listen. You’ll listen some more. You’ll start to believe they’ll be OK. And they will. You will be a better parent for all of it.
You will find the tools that you need. You will take bits and pieces of different theories and practices. You’ll talk to parents and doctors and therapists. You’ll take something from each of them. You’ll even find value in those you don’t agree with at all. Sometimes the most. From the scraps that you gather, you will start to build your child’s quilt. A little of this, a little of that, a lot of love.
You will speak hesitantly at first, but you’ll find your voice. You will come to see that no one knows your child better than you do. You will respectfully listen to the experts in each field. You will value their experience and their knowledge. But you will ultimately remember that while they are the experts in science, you are the expert in your child.
You will think you can’t handle it. You will be wrong.
This is not an easy road, but its rewards are tremendous. It’s joys are the very sweetest of life’s nectar. You will drink them in and taste and smell and feel every last drop of them.
You will be OK.
You will help your sweet girl be far better than OK. You will show her boundless love. She will know that she is accepted and cherished and celebrated for every last morsel of who she is. She will know that her Mama’s there at every turn. She will believe in herself as you believe in her. She will astound you. Over and over and over again. She will teach you far more than you teach her. She will fly.
You will be OK.
And I will be here for you. Every step of the way.
This month we were fortunate to hear from Amy Weinstock , Director of the Autism Insurance Resource Center, (AIRC) at New England INDEX. The Center provides information and support to self-advocates, family members, providers, employers and educators on issues related to medical insurance for autism treatment.
Amy spearheaded the passage of , “An Act Relative to Insurance Coverage for Autism” (ARICA), which took effect in Massachusetts on January 1, 2011. Since passage, there have been many questions relating to the implementation of the law, including who is eligible, what treatments are covered and how to access coverage.
Autism Support Centers
The Autism Support Centers are a great starting point for parents to get guidance and support with information about autism, services in their area, and future trainings. Many of the staff are parents themselves, bringing a personal perspective.
Asperger’s Association of New England (AANE)
A resource and support center serving the Boston / New England area for individuals with Asperger Syndrome, high-functioning autism and their families. AANE website has a database of support groups, family grants, specialized programs, conferences, trainings and more. For more information and how AANE can help you, call 617-393-3824.
It’s Monday, April 2 and I’m waiting to deliver remarks at the “Light it Up Blue” celebration at UMass Medical School. A mom approaches me with her son and I ask him how he’s doing.
“Great” he replies with a big smile and, good eye contact. I ask him how old he is and he proudly holds up four fingers. And then he says, “When I am thirteen I want to be a teacher like Jean”, (his ABA therapist). Then his mother stepped up to me and quietly said, “I want you to know how grateful I am. You passed the autism insurance law a month before my son, (the future ABA therapist!), was diagnosed with autism. It has made such a difference in our lives”.
I reflected back to the signing of the insurance law at Fenway Park, when I said this victory was not just for the crowds assembled, but for the families who would be sitting in a doctor’s office the following day and the next. . . . receiving the diagnosis that had pierced through so many of the hearts and souls of the parents in the stands that day.
And here was that mom I’d spoken of, right in front of me, with her child who had benefited from the treatments we fought so hard for him to be able to access.
At the Autism Insurance Resource Center, the calls keep coming
In our first year, the Autism Insurance Resource Center, received over 600 calls. And as word gets around that we are there to help, the calls continue to increase.
They are people needing information; help in understanding the law; advice about dealing with insurance denials or problems with finding providers. On bad days, I feel like we should answer the phone “complaint central”. But frankly, we’re there for the problems. We help people access coverage. We help them navigate the system.
Insurance is complicated. Insurance for treatment like ABA, that’s never been covered, is even more complicated. It’s a lot of square pegs, round holes, and sometimes brick walls. But we work with people. If it’s a square peg, we try to round the edges. If it’s a brick wall, we look for a way around it.
We try to help. We think we do a good job. And when I meet a little boy who holds up four fingers and tells me he’s going to grow up to be a therapist, I know we do.
To learn more about resources for individuals on the spectrum, join us for next week’s blog. We have a lot of information we’d like to share.
Twelve years ago our daughter was diagnosed with autism. At the time, the doctor explained to us that autism was a neurological condition, and there was effective treatment that could help her. We had good health insurance and we’d always paid our premiums, so we assumed that insurance would pay for the prescribed treatment.
Because when your child has a serious medical condition which can be effectively treated, that is what they do, right? That is the whole purpose of insurance, no? If she had cancer, insurance would cover chemotherapy. If she had a brain tumor, insurance would cover the surgery.
But our daughter had autism. And we were about to discover what so many autism parents already knew – that having even the most comprehensive insurance plan meant nothing in the face of autism.
got insurance? not if you have autism!
It wasn’t right. It had to change. And though my knowledge of the system consisted of an insurance card, a sick child, and no coverage for her treatment, I decided to do something about it.
As Chair of the Insurance Committee of Advocates for Autism of Massachusetts (AFAM), I organized a grassroots effort to pass legislation requiring health insurance to cover autism treatments. Over several years, our small group of parents, armed with no more than an idea and a passionate determination, slowly made our way… from a legislator’s office in the basement of the State House to Fenway Park, we had the honor of watching Governor Patrick sign our bill into law in front of hundreds of people.
got insurance? now what?
We celebrated the victory. We had a new law. It was one of the strongest in the country. But even as the ink dried, we knew there was still work to be done. Because autism treatment had not historically been covered by insurance, the entire community –from families to professionals- all had questions about how the new law would work.
Recognizing this tremendous need for information and support, UMass Medical School established the Autism Insurance Resource Center at New England INDEX last year. I am honored to direct the Center, and proud of the work that we do in educating the community about autism insurance laws and in helping people with autism obtain coverage.
I wish I could say that our work is done; unfortunately true systemic change is slow. But we’ve proven that a small group of parents –armed with no more than an idea and a passion to do what is right – can make it happen.
Next week we will discuss how the law is working and how the Center is helping the Autism Community access coverage under the law.
got insurance? yes we do!
About the author
Amy Weinstock is the Director of the Autism Insurance Resource Center at New England INDEX. She served as Chair of the Insurance Committee of Advocates for Autism of Massachusetts (AFAM) and led the grassroots effort to pass Massachusetts’ Autism Insurance Law.