Is Autism Dad an Autism Warrior? (Part 1)

Earlier this week I had the privilege to interview Kim Stagliano, a prolific writer and mother of three autistic girls. In our correspondence she referred to me as an “Autism Warrior,” the highest of compliments. Apparently she assumed that, like her, I am an assertive, tireless advocate for my son; given my “Autism Dad” moniker, that would be a reasonable conclusion, would it not?

But I’m afraid Kim didn’t read the fine print. If she had, she would have realized that Autism Dad is a work in progress, a single dad trying to find his way in the dark.

An Autism Warrior I am not.

It wasn’t always this way. A couple years ago, after Ben’s diagnosis, I was reviewing research studies, searching for new doctors, scheduling appointments, picking up the boys from school, talking to the teachers, taking Ben to his psychologist and sitting there with the other moms in the waiting room. I made sure I was in that conference room, sitting across the table from my ex, for Ben’s IEP meeting. I was asking questions, fully engaged.

 

Then things changed. The economy reared its ugly head. No longer could we afford any treatments outside of the minimal services provided by the school district. This meant no more psychologist, speech therapist, occupational therapist, or music therapist.

The divorce came soon after.  Somehow Heather managed to push through a court order that gave me one weekend a month with the boys. I will never know what was really going on inside her head and heart: Did she really believe that the less time with Daddy, the better off the kids would be? Whatever my flaws, was this really the best thing for the boys? I had shown time and again that I wanted to be an equal partner. Why couldn’t Heather see this?

It took months, but finally we got in front of a court mediator—a woman! My luck, I thought to myself: I get an FMM, a Feminist, Man-hating Mediator. (While I have always endorsed the goals of economic feminism, I will never endorse the brand that teaches that men are expendable). I sat there while Heather completely ambushed me, portraying me as unreliable and undependable. The attacks hurt like you will never know, but they also seemed wildly out of proportion, almost laughable, and I let them roll right off of my shoulders. It came as a great surprise, and great relief, when the mediator looked incredulously at Heather and questioned her version of events. She accused Heather of exaggerating and distorting things for her own agenda. And most important, she amended the divorce agreement so that I had more time with the boys, though not nearly enough.

This was in spring. I began picking up the boys after school; they’d spend the night with me and the next morning I’d get them to school–not once was I late. The teachers and administrators began to recognize me. It felt good to be involved. One morning we arrived well before school started, so I escorted the boys to the cafeteria for a light breakfast.  I sat there in a miniature-sized chair and made sure they ate a little something. 

After summer break, things changed. Heather announced that the boys were now taking the bus to school, which sort of removed me from the equation. After the bank repossessed my home, I moved in with my dad, nearly an hour’s drive from my boys. Now I feel disconnected from my boys’ world, from their school life and social life. Heather shares no information with me, nada. But what about the amended divorce agreement – surely it would ensure my rights as a dad are protected. How naïve of me.

Here’s what I do know: I can’t rely on my ex to keep me abreast of what’s going on with my boys, I can’t depend on the schools to reach out to me, and I can’t rely on the courts to enforce my rights as a father. The obvious conclusion: if I want to become more involved in my boys’ lives—if I want to be an Autism Warrior—it’s going to be up to me.

Accordingly, I now submit to you my ‘Autism Warrior’ Action Plan to achieve the desired outcome:

1. Have ongoing phone and in-person meetings with Ben’s teacher. I want to know her evaluation of Ben, what strategies are working and what’s not, and what I can do to ensure continuity and consistency so we’re all on the same page.

2. I have received no correspondence from the Regional Center for over a year, nor has anyone invited me to the IEP meetings. I will make sure I am on their radar.

3. I will ask to meet with Heather to discuss how we can improve communication. I don’t hold out much hope here, but it’s worth another try.

4. When my financial situation improves, I will think seriously about renting a cheap apartment closer to the boys. But doing so will take me away from my 81-year-old father and best friend with whom I live.

5. What else? This is your chance to chime in. What could or should I be doing that I’m not doing?

Of course I could just let Heather handle things. She’s a great mom. I could focus instead on finding work and enjoying my boys when I do have them. But this hands-off approach would validate her world view: men will invariably disappoint you and cannot be counted on.

That’s not the type of man I want to be. I want to stand up and be counted.

And counted on.

### 

Editor’s Note:

Also available on Facebook: http://www.facebook.com/home.php?#!/pages/Autism-Dad/160327080653310

Advertisements
This entry was posted in November 2010 and tagged , , , , , , , , , , , . Bookmark the permalink.

14 Responses to Is Autism Dad an Autism Warrior? (Part 1)

  1. aspergersmom says:

    I think the biggest and best point on your action plan is to work towards living close to your children. As a mother of NTs, a step-mother, mother of an Aspie, and the wife of a very involved dad, I can say from experience that nothing, absolutely nothing can replace being around every day. My husband hates the state, weather, economy, area and schools where we live. He has hated them for nearly 14 years, but he has stayed because he refuses to live far away from his kids or require them to choose between parents. If he couldn’t give them an in-the-same-home set of parents, he was going to make sure he saw them every day. His kids (older kids) are in their teens and he has always lived within 5 minutes of them.

    This determination was put to the test this last year when he was out of work for more then 9 months and the area we lived in had one of the highest unemployment rates in the nation. He looked and looked and looked for work but wouldn’t take a job that made it hard to see his kids and be able to show up for all the little things, like doughnuts for dads. However, I have seen the difference it has made. He has been there to coach teams, pick up from school, drop off and was the easy choice when his ex wanted a night off. Also, as the hurt of their separation subsided over time, his geographic closeness made it easier to co-parent. Calling on him was an obvious and easy solution. It would also be hard in court to present him as anything other then a thoroughly involved parent (although she never really tried to do so) . Most of all, he is confident that he is his kid’s dad. Despite the divorce, he has an amazing relationship with both of them.

    My ex, on the other hand has always lived far away. He has always provided well, financially but hasn’t been around. He has never attended an IEP meeting or a school function of any sort. I have seen the outcome of those choices in the quality of the relationship my kids have with him. There is a gap there that no amount of phone calls, over-the-top vacations or presents can fill. Being there is as simple as being there, flaws, strengths and all. Don’t wait for someone to tell you that you are good enough to be your kids’ dad. Go for it! You will never regret that you did!

    • Autism Dad says:

      Rachel: I read every word you wrote. And all I can say is, I know now what I need to be do. My direction is clear. Thank you from the bottom of my heart. I will keep everyone posted.

  2. Jean Nicol says:

    I would say be “the type of man I want to be. I want to stand up and be counted.
    And counted on.” to take your own words. Be this person for yourself and your boys. Be as involved in their lives as much as is possible, do some documentationand head back to see that court mediator and fight for more time if that is what you and your boys want. You won’t ever get this time of their lives back. You also won’t get the time back with your father, so don’t give that up for the sake of an hour’s drive. Your boys would miss the time they spend with their grandfather too and so would he I’m sure. Be true to you and them and take their mother out of the equation if you can’t make a positive relationship work with her. Good luck, you can do it!

    • Autism Dad says:

      Jean, thank you for your thoughts. I realize now that I need to be closer to my boys, even if find some cheap, hole-in-the-wall apartment and spent a few nights there every week and a few nights with my dad…I am sorting through my options…many thanks!!!

  3. Louise says:

    You need to be an active participant in your sons school life, not just on their “radar”-unless there is a court order preventing you from doing so, you need to get the same correspondence from the school as your ex-wife does-that includes all notices, report cards, progress reports,etc. You must be included in all meetings, especially IEP ones. Set up a parent teacher conference to meet the staff that works with your child each day. Ask to see all records the school has on your son-you are entitled to look at everything-start keeping your own records of everything the school gives you-IEP’s are legal documents, make sure the school is following through on everything that is written down-Hope this helps

    • Autism Dad says:

      Hi Louise: I don’t know why I need to be told what is probably so obvious to everyone else, but I don’t really have much of a support system. So you all are it! Thank you again for your guidance and for caring! Regards……..

  4. Catherine says:

    I strongly agree about the involvement in the IEP meetings – and you should be at parent teacher conferences as well.

    You are also entitled to, and need to set up some sort of correspondence – in writing, or by email – from his teacher and therapists. You need to know what they are working on. (Follow through at home helps so much!) When my boys were in public school speech, OT, etc were only a tiny part of every week. The real progress came when we did the heavy lifting. You also need that line of communication so that you can let them know when you see an area that needs help, or where you see improvement. For example, if your son is suddenly more anxious about transitions, or has developed a fear of dogs, etc… everyone needs to know, everyone needs to be involved, and everyone should be using the same strategies to help. That way you will ALL know what is working, and what isn’t.

    We used to have a notebook that everyone wrote in. If your son has one, it should come with him when he visits you so you can keep up, and add your own experiences and observations.

  5. Pie Maker says:

    You’ve gotten some good advice here! I simply wanted to add that whatever you do, be consistant. It’s helped my own daughter so much to know the routine of her visits with Dad. You’re on the right track!

  6. Nancy says:

    Heather should feel fortunate to have you as an ex-husband and co-parent. Three weeks after we received the assessment that indicated that our thirteen-month-old son Cade was autistic, his father said he wanted a divorce and told me to take Cade and leave. I was against the divorce because I thought it was unfair that, with the difficulties he faced, Cade would not have both of the two people in the world who love him most with him full-time.

    The divorce decree spells out the time Cade will spend with his father, but his father’s choice is to see Cade for one weekend every three to four months. Cade is always very excited to see him, and they do lots of fun things: this past weekend it was the zoo and the aquarium. Then I had to watch once again as this almost unbearably sweet five-year-old stood at the front gate and watched his father drive away. I think part of the reason he is always so happy to see him is because by the time he returns, Cade has almost lost hope of his coming back.

    • Autism Dad says:

      Hey Nancy — Thanks so much for your supportive comment. It’s hard to believe your ex wants so little time with his boy. It’s a real shame. But at least he shows Cade a good time when he does see him. Thanks for reading and keep me posted………

  7. Peter says:

    Hi, my name’s Peter and my son has autism too. I think that your posts are very well-written and from the heart.
    In my opinion, kids with autism are more “real” and based on some that I’ve seen and a young man that I’ve met, have more potential than the average kid who is more concerned with being in the “in-crowd” than realizing his or her full potential. I try to keep in mind that although some life-skills aren’t developing as fast as other kids, thinking positive costs nothing and in my life, at least, it definitely yeilds results.

    • Autism Dad says:

      Hey Peter — Thanks man for dropping by and for the really nice feedback. I totally agree with your take. Fathers may have difficulty accepting it, but once we do, we can have an amazing and beautiful relationship with our kids, in a way that other dads might not be able to understand. Hope you subscribe so we can stay in touch! Many thanks again….

  8. Rachel says:

    wow…I just found your blog today and I’m glad I’m here. I think your words are going to help me.

    Your story (and I’ve scrolled a bit, so I’m combining several posts) have started me thinking a lot. I don’t think all men are going to disappoint me…but I know my ex has in the past, and it’s hard to believe and hope when you’ve been hurt so many times in the same way. Some of my reactions during the divorce and subsequent months has been sheer gut reaction to protect my son from getting hurt like I did.

    To give you an idea: I found out he wanted a divorce when the papers showed up at the front door during a quiet Saturday night dinner with him. Trust me when I tell you that this is the tip of the iceberg when it comes to his communication skills, or lack thereof.

    Our son was formally diagnosed with autism after the divorce was over…because when I really started being concerned, it was during a nearly year long custody battle, and I thought most of the signs were from extreme stress….he could feel everything, as much as I tried to shelter him from the vast majority of it. But my ex refused to agree with me. He felt everything was hunky-dory fine with our son. I had to start the process of getting a court order for the evaluation, and for some kind of therapy because when I tried to point out to my ex the stress the baby was under, and ask for him to consent to therapy and evaluations, he told me he had to consult his lawyer. Consult his lawyer? Again, tip of the iceberg. Can you blame me for not trusting?

    He’s trying though. He shows up for IEP meetings, despite my winning a relocation case, and moving 3 hours away. He shows up for major doc’s appointments, so that’s something. But with his history, I keep waiting for him to stop being involved. I keep waiting for the other shoe to drop.

    He may not keep any kind of routine, follow any schedule, or provide structure or anything when he sees our son every other weekend and for most holidays….he doesn’t follow things like letting him have his chewy tube during the day, and just gives in to the pacifier because it’s easier. I have a ton of fallout every other Sunday night when my son comes home because of the transitions, and the complete lack of routine and structure, but he’s trying.

    I hear your struggles on not being so involved. I’m glad you are making the effort, not only to be involved in the school, but also being at peace with your wife’s new boyfriend. That’s not a road I’ve crossed yet, so kudos to you for showing me how to do it gracefully. I do know I do my absolute best to keep my ex informed about everything….all with a silent prayer that he not do something to dash my hopes that were raised again when I see him showing up at this appointments.

    I don’t know your ex, and I don’t know you. And our stories are not the same. But reading your experiences has been enlightening, and I promise to consider them deeply as I go through life parenting with my ex. May I offer one more thought? I’m the mom in control of everything. I have to be, because as a single parent working full time with an autistic and hearing impaired child the only thing that gets me through is sheer control. I know every tiny detail on my son’s IEP. I’m the one doing the research, keeping up with trends, watching progress, evaluating goals, and more. I know the name of every doc, every specialist, every teacher and more. If I don’t do it, it won’t happen. But I don’t know what goes on in my ex’s house when my son is with him. It’s really hard to loose that kind of control when you need to be in control of so much all the time. I hope that helps you see through your ex’s eyes a bit too.

    I’m sorry this is such a long comment, but I just wanted to thank you for your perspective. I will be following the blog/facebook now.

    • Autism Dad says:

      Hi Rachel: Thank you for taking the time to read the essays and for taking the time to write this beautiful and insightful letter. Please stay in touch and many thanks again….

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s