Susan's Blog

Wednesday, December 28, 2011

Washington Post: Tiger Mother Oped

The Washington Post ran this oped of mine on Christmas Day:


Tiger Mother to an autistic son

By Susan Senator, Published: December 23

Susan Senator is a writer in Massachusetts and the author of “The Autism Mom’s Survival Guide” and “Making Peace With Autism.”

I’m tired of being called brave. But being the mom of a deeply autistic young man of 22, I can’t avoid it. Because I survived. Ever since Nat’s birth, in the Autism Stone Age of 1989, I have had to be a Saber-Toothed Tiger Mother — or at least pretend to be one. From finding the right doctors to getting my town to do right by him, to also doing right by my other two sons, I have always had to be strong — or feign strength. What to expect when you’re not expecting autism? No one has real answers. They didn’t then, and they don’t now. It has always been up to my husband and me.

I never thought that figuring out autistic adulthood would be the same way. Now that Nat has finished school, I feel like I am right where I started, the diagnosis days: grieving, confused, panicked. I’m sad because I miss the comfort and safety of the old routines.

I miss the school-day structure and the knowledge that Nat had caring, qualified people teaching him things. Even when Nat moved out at 17 and into his school residence, I felt like we had a routine, and a lifeline, in the school professionals. Anchored by the federal mandate of special education, staffers were required to be responsible for Nat’s growth, and they were. But it isn’t even that in­cred­ible system that made the school years so great. Teachers don’t work with autistic children if they’re concerned about all the regulations and paperwork; they go into teaching guys like Nat because they are game for the challenge, they think on their feet and, most of all, because they are special.

Those teachers who worked with Nat through the withdrawn, too-quiet years to the scary-tantrum phases — they are the heroes. Still, I am told that I am special because I am Nat’s mom. As though I am a saint, somehow chosen. But I’m not. I’m just a mother trying to raise my son to be the best he can be.

The other thing I hear a lot is that Nat is an angel, closer to God than others, here to teach me something. No, he’s not. He is just a complex young man. He’s not a spiritual messenger or a puzzle. The adult-services system, or perhaps the lack thereof, is the puzzle.

Helping Nat have a decent adult life is our family’s greatest challenge — not Nat himself. We want him to have a life with something to do: a job, volunteer work; a place to live safely, cared for; days with a rewarding rhythm. These are things I’ve been working on since he was a teenager — along with his school. Those teachers had Nat working at Meals on Wheels by 14 and at Papa Gino’s by 19.

Now Nat is transitioning to adulthood, He is finished with public education services, and he begins navigating the far more complex adult-services system. I’ve done everything “they” tell you to do. I attended workshops, seminars and conferences. I pushed to get Nat funding and to qualify for whatever programs might help him live as independently as possible. I know I can’t afford a staff person myself, nor will I live forever.

I did my homework. I visited an adult group home before Nat graduated and did not like what I found. Care was adequate but lifeless. Some of my friends’ children had it even worse: from regularly missed appointments to soiled, unchanged underwear. We’ve all learned that adulthood can be abysmal for kids like ours. And yet without the programs we’ve got — troubled though they may be — we have practically nothing. I cannot fathom what would happen to all of us without programs such as Medicaid and the other gossamer-thin safety nets.

It dawned on me recently that I am going to have to do more than act tough and tireless: that I have to become what they say I am. Because I have to face the fact that no matter how hard I push, we still may not end up with a good situation for Nat. If only there were a waiting list for a stable adulthood experience like those to get into the good autism schools. I know how to be on those.

I’ve tried for the past year to put together my vision for Nat: a group home of my own, with like-minded families and staff that we help choose. And every time I get close to succeeding, some piece or another does not fall into place. You can’t get funding until you have a group. You can’t get the group together until you have a house. You can’t get the house until you have the funding.

And so, on top of all the emotional upheaval, Nat’s turning 22 is a Catch-22. Funding is scarce, and the programs can be iffy because of it. As always, there is no one to ask; every expert and professional has a different story. In the end, I’m figuring it out as I go, only now I am no longer a young mother.

I am, however, still Nat’s mother. So I suppose I will continue to roar.


You put it well. Guess lots of parents, no longer young, are figuring it out too. I would love to hear what some of them have figured out that is working for them.

— added by Sarah on Wednesday, December 28, 2011 at 1:20 pm

I just turned 40 and have a 7 1/2 yr. old and am already exhausted by all that Autism requires of me. By the time my son is 22, I will be 55 and can only hope that the situation improves for young adults. Although it is difficult to peer into the future when I read your blog, I am grateful to you for sharing your personal struggles and triumphs with other Moms. I realized that I need to do the same for the parents who have newly diagnosed kids in my community. Every kid with Autism is different, but there are some universal issues we all fear and have to deal with. I completely relate to your discomfort with being labeled “brave”. I cringe when I receive compliments related to my parenting my son. It feels so icky and unwanted. I hate that this is how I define my role as a mother. It was thrust on me and has already completely and forever altered who I am as a person. I long for the vision of motherhood I fantasizes about while pregnant and in that first year. I do realize that I have set out on a course (although unwillingly) to learn patience, acceptance, to try to stop trying to control things that can’t be changed and to identify my greatest fears, allow myself to be scared and sad and do the very best I can to love my son more than trying to fix him. This is a serious work in progress, but one I will still be on when like you, my son is 22.

— added by Christine B. on Friday, December 30, 2011 at 2:44 pm

I have no children, but I am proud to say that I know a young woman with autism whose parents were also faced with your dilemma. So dissatisfied were they with places for autistic persons who had reached the age of 21 that they developed their own. Mandy’s Farm is in Albuquerque, NM. I have visited it, unannounced, so I know what really happens there, and it is wonderful. Amanda Robbins (Mandy) lives there with friends and caregivers, her special dog, horses and other farm animals. Inside and outside of the bright and airy buildings, the young women enjoy art, music, swimming, learning and communicating. They also have chores that help keep the farm going. They belong and contribute. As a speech pathologist with over 30 years of working with such children professionally, getting to know and love them personally, allowing Temple Grandin to open my eyes to new ways of understanding, and seeing what can happen when the environment is conducive, I join Mandy’s parents in the realization that there is a place of comfort and family for adults with autism. Mandy’s mother, Ruthie Robbins, searched literally around the world, talked to others who had developed programs and places, got community support and made it happen. I urge you to talk with her if you can. I’m sure she would roar with you.

— added by Cyndi Dionigi-Huffman, MA,CCC-SP on Sunday, January 1, 2012 at 3:33 pm

Happy New Year Susan! It has been too long since I checked your blog and I continue to be amazed at how I nod, laugh, cry and totally “get” everything you write about. I love hearing about you, your family and how Nat is doing. You are so right that the adult years for our special needs kids need some serious attention. Cindy Dionigi-Huggman, thank you for what you shared about Mandy’s Farm. It gives me ideas and hope for our son. We did get Ben’s service dog this year and it has been fantastic. “Can Do Canines” in Minnesota gives Autism Service Dogs to families FREE of charge. We waited 2 1/2 years but it was well worth it and I am so thankful. These dogs help our kiddos stay grounded and safe (because they are tethered together). Ben can walk independently in malls now with his dog which he was never able to do before. I am rambling but my point is let’s keep putting our heads together for ideas that can change the game for this complicated thing we call Autism. Ideas on service dogs, better living situations and overall care are so important!

You guys are great! Susan, you rock!!


— added by molly fliearman on Sunday, January 1, 2012 at 7:43 pm

I normally never write in response to things I read, but your story hit home. I almost felt like I was reading my own story. My parents gave me your article that came out around Christmas in the Washington Post. My oldest daughter is 21 she was diagnosed PDD NOS when she was in Middle School.
We have her working with a The ARC of Southern Maryland right now. They have found her a part time job but the hours are not consistent. I am also very frustrated with the lack of communication from these organizations. When they don’t have the work for her they take her to the Mall, the Library or she will just stay home.
Like you I would love to find a group home for my daughter (mostly because she wants to move out and have a life of her own). I would like to find a safe environment where I know the other families and they all care as much as my husband and me. The places I have found I won’t trust them to look after my daughter they way I would want her looked after.
Thanks for writing your blog. Now that I found it I will check in to see your progress.
Keep on roaring!

— added by Suzette Young on Monday, January 2, 2012 at 10:20 am

Molly, your thanks should go to Mandy’s family for doing such a fantastic job and making a real difference in the lives of several young women with autism. As to your situation, how wonderful that your son has his own service dog!

— added by Cyndi Dionigi-Huffman, MA,CCC-SP on Monday, January 2, 2012 at 6:48 pm

I also get it. My son is almost 13 and I’m scared to death about what will happen to him when he’s out of the public school system.

— added by Tina on Sunday, January 22, 2012 at 8:46 pm

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