Parenting a Child with Autism: Accepting the Village

I thought I would start my blog by sharing a little insight into the inner workings of TMR.  In addition to writing our blogs, we all have different roles and jobs. Some of us are responsible for formatting, some for editing, some for merchandise, etc.  Saint is responsible for setting up our blog schedule. Every month, she sets up the schedule and adds all kinds of interesting information regarding the calendar.  I’ll bet you didn’t know that October 6th is Mad Hatter Day, or that October 22nd is National Stuttering Awareness Day. I’m sure you can see how some of these could inspire blog posts. According to Saint’s schedule,  today happens to be Hillary Rodham Clinton’s birthday, and while I have nothing to say to that other than “Happy Birthday,” seeing it on the calendar made me think about her book, It Takes A Village: And Other Lessons Children Teach Us , which then made me think about all of the people who have come and gone from our life since my son’s diagnosis. For special-needs families, the village often feels more like a small city. While I know that all of these people are necessary and have been integral to his healing, letting other people in and having to give up control has been one of the hardest things about this process for me. At times, my village has felt more like unwelcome guests that won’t leave.

My son is seven and has been receiving services since he was 26 months old. The only diagnoses I had at that time were sensory processing disorder and a speech delay. He had not fully regressed into autism yet, but it was clear there were problems. We started out going to speech and OT twice a week, where the therapists worked as a team. For the first few months, our main goal was for him to be able to do anything other than just run.  I watched, listened, learned and practiced at home. We stayed with these therapists for almost three years, and he made amazing progress.

He received his autism diagnosis at three, and these incredible women were right there holding my hand as I received the news. I knew they were invested in my son and that he was in good hands. I also knew that a little speech and OT wasn’t going to be enough. I enrolled him in a fabulous preschool whose director went above and beyond to learn everything she could about teaching kids with autism and accommodated him appropriately. Still, that magical, mystical “window” loomed in the distance and haunted every minute of my day. I felt the time crunch and knew we had to do more. Enter ABA and an in-home program at age four. We got a Family Support Specialist through Early Intervention, a Program Manager, and some woman they apparently pulled off the street who had exactly no experience working with children EVER, much less working with children with autism.

In two years, we went from having two therapists who we saw for a couple of hours a week to having six people involved, one of whom would be spending 25 hours a week in my home. This was by far the worst time in my life. I have always come from a place of understanding that if something has the potential to help, it must also have the potential to harm. This would be our experience of “ABA.” I won’t make any assertions about ABA as a form of therapy. I think the effectiveness of any intervention depends upon the individual needs and personality of the child, the approach of the practitioner, and timing.

Photo by:  Mommy Has a Potty Mouth

My son was injured by vaccines and unfortunately, I allowed this to happen. I didn’t do enough research. I knew enough to ask questions about thimerosol and vaccinating while he was sick and on antibiotics. I knew enough, but I didn’t have enough self-esteem or confidence to call into question the answers I received. I watched my child deteriorate, but still I didn’t believe that I could possibly know better than experts. I was a first-time mom. The vaccine thing was a rookie mistake that unfortunately had dire consequences. Fast forward two years and, while I had gained a lot of confidence in terms of mothering, I found myself in the precarious situation of deferring to experts once again, only this time, it was about autism. Having learned my lesson about giving over control of my child’s care to someone else, this felt beyond awful. I knew I needed help. I knew that my son’s life depended on it, but it felt wrong.

I have my own social issues and really can’t handle interaction with other people for hours and hours every day. I am one of those mothers who is so protective of her kids that they have never had a babysitter. They haven’t spent a day in daycare. They have never spent the night with their grandparents, and I have never spent a night away from them (much to the dismay of my fellow Thinking Moms who have enjoyed autism conferences without me). It’s just who I am and how I parent. I am not suggesting that this method is preferable — it’s NOT. Get a babysitter, go out to lunch, go on a date.  The way I do things is not necessarily healthy, but it is who I am. I am also intensely private, so having someone in my house five days a week and being forced to share my family with them was pretty much my idea of a living hell. I’m sure my feelings about this probably contributed to the lack of progress with ABA.

By this time, we also had a DAN! doctor on board, and shortly thereafter a homeopath. Add two more people to the team. We had also started hippotherapy (horse therapy) with  a husband/wife therapy team. So how many people are we up to now? I think that makes 10.

The in-home program did not work for a myriad of reasons that I won’t get into here, so I dumped it. I kept our Family Support Specialist, whom I came to love. She has helped me for years, and we still stay in touch. I will say this about any home program, therapist, doctor or provider of any kind: The only person to whom you are required to show commitment and loyalty is your child. Period. If you are with a provider and it doesn’t feel right . . . it’s not. If you work with a therapist or physician and, after a reasonable period of time, your child is not showing improvement . . . move on. Don’t waste time out of fear that someone might get upset with you.  In the grand scheme of things, it doesn’t matter. There are other therapists, other practitioners, other avenues to pursue.

My son entered public school for kindergarten right after he turned five. We traded private therapists for school therapists and added a case manager and a special education director. We have been with the same therapists and providers for years now and I am very happy with our team. At this point, we are down to a village of seven lovely people who work with him and truly care. It has taken me years, but I am finally beginning to get comfortable with the idea that I have to share my son and his outcome with other people. I congratulate and thank them when I see him make progress that I can attribute to their work. They do the same for me.

I sit today with a nearly-recovered child and have to give credit to all of the people in our village. At the same time, for all of you new Mommies meeting therapists for the first time, setting up home programs or waiting for your first DAN! (now MAPS) appointment, I understand the feeling of, “This can’t be happening. I was supposed to take care of him. ME! Not all of these other strangers.” I understand what it feels like to have to ask for help. It sucks. Big time. Just know that it does get easier, things WILL get better, and if you trust yourself, you will know who to let in. I hope that your child’s village is filled with kind, hopeful, dedicated people who will not stop until he/she is recovered.

~ Mountain Mama

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7 Responses to Parenting a Child with Autism: Accepting the Village

  1. Donna Powers says:

    Thank you! Honesty…so appreciated. And so freeing…we can create the ideal and exact village that we need to heal, to grow and to share.

  2. Pingback: Thank You For Not Vaccinating | The Thinking Moms' Revolution

  3. Martina says:

    Thank you for a wonderful post – I, too am one of those mums that look after my children because it’s what I do – all six of them, and we homeschool. We’re in Australia and there is no support system here like you describe, so we’ve had very limited therapist contacts, but even those have been draining on me. But I have learned very quickly to ask for what I want, and if it’s not happening then we move on. The team approach here is non-existent, the parent has to make it happen, but we’ve managed to find people who are caring and supportive. I’m slowly working on expanding our village!

  4. Florence says:

    I built my App around the concept that it takes a village. I’m from a village in West Africa and without your village members it it near impossible to manage normal daily let let alone care for a child with special needs. i had to recreate the village concept when i moved to the U.S by building an App that allowed my son’s therapists, friends and coaches/mentors that have helped me along the way thus far.
    My son’s village members care very much about his health and welfare just like our extended family do. right now the can offer more than our family that is thousands of miles away is able to give.
    Our Story in Pictures: http://on.fb.me/SUTUK4
    The App is called Livewello and it is free. Download it At: http://itunes.apple.com/us/app/livewello/id544498633
    And never stop building a village around your child.

  5. Saint says:

    So much I love about this blog Mountain Mama, but what really keeps circulating through my head is “How are we gonna get her to Chicago in May?” Family vacation? Bring the boys? Jaz can come and babysit? We simply kidnap you? Whatever. It. Takes.

  6. BESkala says:

    Thank you for sharing. We, too, had a “small city” (<- I like that!) for nearly two years in and out of our house. It did take a while to get used to. Ridiculous things like, "Is the bathroom clean?" and "Quick, hide the clutter!" was what I was first concerned with. Ah, such foolishness. As with so much in life, if I only knew 10 years ago what I know now.
    I echo the sentiment about dumping those who are not helping your child or whom have overstayed their usefullness. We had an in-home speech teacher who was very knowledgable & very chatty, just more to *me* than to my child. Towards the end of E.I., she would spend 15 of the 30 minute session yakking about her life, kids, etc. I should've done something about that. Even if it were just to leave the room for "laundry" or some other fib. I didn't want to make waves, as she had been around for so long. That was a mistake. You are so right – in the long haul, don't worry about stepping on toes. The goal of recovering your child is more important than making (short-term) friends.

    • Blaze says:

      AH, yes! The ones that you love, you let them in personally, then you all of a sudden are THEIR sounding board, when your problems are the ones that are supposed to be worked on! GUILTY so many times, and it’s not even really their fault. They should have cut ME off. I’m the stressed Mom, THEY are the professional…right? 😉

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