No More Playdates

By Cecily Ruttenberg

Seeing him alone on the playground is the most painful part.

He is eight years old and was diagnosed with high-functioning autism at age three. We have tried chelation, social skills groups, occupational therapy, RDI and even a little voodoo magic. Still, he eats alone.

For years I tried playdates. I would thumb through the school directory with a sense of defeat, dialing the mother I imagined least likely to say no. Then in my cheeriest tone, I would bargain for a day from some kid's week of baseball practice and hockey team, trying not to sound too desperate or available. If I got a yes, the real frenzy would begin. You'd think we'd be having the president of the United States for company. The preparation was unbelievable! By the end of it, I was like a strung out circus clown.

I won't do playdates anymore.

With one exception—family friends. This, I have found, is the missing link. Community. Family friends. These mothers won't say no. If their sons complain, I know what they will say. “Tough.” It makes me cry with gratitude.

And a strange thing happens over two years, five years, eight years having potlucks and dinners and get togethers with the same families and all of our kids. Their kids come to accept my kid, in all his quietness and differences. It is just a given. Unlike the over scheduled, baseball playing classmate who can quietly whisper to his mother he'd rather NOT have a playdate with my kid, these kids don't have that luxury. Nor do they expect it. The relationship is different.

This realization has been incredibly freeing. Instead of trolling for eight year old boys, I now seek friends for myself! My qualifications? Kind, down-to-earth, non judgmental women. You know, real moms! Not-so-surprisingly, there are plenty of them , even outside the special moms community. While they might have typical kids, they've had a few other difficulties roll their way.

And when it comes to our kids, my heart swells with gratitude at the thought. They don't think they are doing me any favors. That's just what you do with friends.

Cecily Ruttenberg is a writer and editor who lives in Santa Cruz, California. She is the mother of an eight year old son with high functioning autism.

Comments

[sign lady]

"sign lady,your suggestion sounds suspiciously like the same sort of forced socialization that Ceciley said didn't work with the Playdates....One teacher or adult sitting down with each autistic kid is the only way to do it."

Roger, I appreciate that one-on-one worked best for you, but many ASD children can handle being with another child or even a small group of children at a lunch table - with a teacher or other competent adult's involvement.

The failed playdates mentioned in the post were with NT children who were selected according to their mothers' willingness to say "yes," so my suggestion was very different. School personnel are often in a much better position than parents to select appropriate playmates/lunch partners and help facilitate those connections. I feel it's very important to not let the school off the hook when it comes to an ASD child's social needs. An 8-year-old sitting alone every day at lunch (who wants to be with others) indicates a failing at the school, IMO.

I'm glad Cecily created a wonderful, supportive social network outside of school.

[chrissy]

Thank you for this! My 4.5 year old son is in that awkward realm of not being NT enough to be NT, but no longer autistic enough to be recognizably autistic. He's incredibly outgoing now and really wants to have friends, but is totally clueless as to why no one will play with him more than once. We do have a close-knit church family, and the other children care about him and accept him... but that's as far as it goes; no kid wants to be unexpectedly tackled, screamed at or be pelted with dirt clods (my son's "calling card"). It was easier when he just wanted to be by himself... now its heartbreaking to see that he is realizing that he doesn't fit into either world. All we can do at this point is force a smile through our carefully scripted and supervised playdates.

[Autism Grandma]

So many sad and heartwarming stories about trying to provide friendships and socialization for autistic children.... My grandson was so hyper, unable to communicate, understand or take direction, uncontrollable, and sometimes aggressive and angry (biting and hitting) that in the beginning of his vaccine induced autism regression, I was intensely afraid for his future...not just the fear of his inability to play with other children and develop friendships, but the fears regarding his inability to communicate and learn, in addition to all of his many physical health conditions.

Due to my intense fears and concerns for him I was "driven by desperation" to continually research and thank God for the autism recovery community and Defeat Autism Now because this information is leading to my grandson's recovery. Although he still has a long way to go on his healing journey, I did not even fully realize the extent of his improvement over the last year and ahalf until I filled out a registration today on Generation Rescue. I have been so continually focused on "what is the next thing to add" to his recovery program that I did not have full appreciation for how much progress he has made thus far. I am also becoming grateful for the first time in the last 20 years since my own chemical injury disability in that everything I have previously researched regarding toxic exposure health damages and recovery for myself has contributed to the "data base" of information that I have applied to Landin's autism recovery especially Defeat Autism Now protocols.

I am copying the information that I wrote at Generation Rescue in the hopes that others who are in this same boat will be able to benefit from our recovery experiences with my grandson:

Landin Registration Generation Rescue
http://www.generationrescue.org/grui/home.php

Child's First Name: Landin
Birth Year: 2006

Major Symptoms:
Autism regression immediately following vaccines, diarrhea, rashes, fever, inability to sleep, severe intestinal pain, intestinal malabsorption, weight loss, hair loss, neurological issues and loss of ability to walk, loss of speech, continual screaming, head banging, biting and hitting, loss of eye contact, no response to name or otherwise ("zombie mode"), inability to understand or learn, hypersensitive to noises, touch and stimulation, low frustration tolerance,extremely chemically sensitive [the list goes on and on]

Formal Diagnosis: Vaccine Induced Autism

Therapies Tried: IntraKid (Drucker Labs) and SYNBIOFOOD (Trinisol.com) (Both are organic vitamins and minerals requiring no digestion), GFCF DIET, SUPERCRITICAL EFA's (Trinisol, absorbed through skin), Cod Liver Oil, Lecithin (Sunflower after allergic to Soy) TRIENZA (Houston Enzymes), Probiotics (BIOTICAL, Primal Defense for Kids, and CocoBiotic), Angstrom CIL-VER (Silver from ewater.com, natural antifungal, antibiotic, antiviral, does not destroy intestinal flora), INTESTINAL SOOTHE AND BUILD (Nature's Sunshine) MPS Gold (Aloe Vera) Minty Ginger (Herbs for Kids), and aluminum free baking soda (both resolves acid indigestion), Organic Anstrom Minerals (Ewater.com), AquaMin (Organic Cal/Mag, Swansonvitamins.com), Alive Whole Food Vitamin C Complex, Perfect Food (Garden of Life), Capra COLOSTRUM (Mt.Capra Organic Goat), Liquid Chlorophyl (Nature's Sunshine),Organic Clear Fiber (Renew Life), SUN WARRIOR RICE PROTEIN (Organic Predigested), TRANSDERMAL B-12 CREAM AND TRANSDERMAL GLUTATHIONE CREAM (Springboard4Health.com) ZEOLITE ZMP-400 Forever Green)[Note: Amazing ability to chelate heavy metals and toxins, however I tried as the "guinea pig" first and 4 other zeolite products were too strong!!!]

Helpful Therapies: Above listed in ALL CAPS.
Landin has required this extensive nutritional program in order to compensate for his severe digestive issues and malabsorption. This program enabled him to regain lost weight and restored his nutritional deficiencies. However, there were specific therapies that produced AMAZING results, especially the B-12 and Glutathione Transdermal Creams, which restored his neurological functions and his ability to respond and interact with us. The enzymes, probiotics and Intestinal Soothe and Build are restoring his intestinal damages. Cil-ver has eliminated his candida and measles issues without the use of drugs. Sun Warrior Organic Rice Protein has resolved his protein malabsorption issue due to the enzymatic predigestion. Mt. Capra organic goat Colostrum was miraculous in that it produced his first entire night of sleep after the vaccine fiasco and he continues to "sleep like a baby" with this which also reduced his intestinal pain and cramping. (THANK YOU GOD!!!) We have also utilized various homeopathic remedies and Young Living Essential Oils which have further enhanced his recovery in many aspects. We just started Landin on the ZMP-400 Zeolite at only 2 drops per day and slowly working up. His aluminum heavy metals test demonstrated off the charts at 1,260 (with 100 being normal level) We will also try Bentonite Clay and Spirulina for natural chelation since he developed liver jaundice after only one dose of the drug Chemet (DMPS) I researched chelation thoroughly and natural chelation is just as effective and so much safer. We also intend to pursue Hyperbaric Oxygen as soon as we can figure out how to rob a bank:)

Current Condition:
Landin is Night and Day compared to his previous horrific condition. Since adding the B-12 and Glutathione transdermal creams, Landin recovered his walking ability, is no longer noise and touch sensitive, no longer continually bangs his head, bites or hits us and responds to us now and is able to understand and learn. He is finally learning how to use the potty chair. Due to the multiple therapies regarding his disgestive disorders, he no longer has allergic reactions and asthma, has regained his lost weight and his nutritional status and ability to digest foods has greatly improved, with NO MORE DIARRHEA....and he is speaking words again. His chemical sensitivity reactions are improved even though he still cannot be exposed to perfume especially. It is such a blessing to see Landin playing and smiling instead of continually screaming and throwing his toys out of frustration. Although he is very far behind for age 3 in his speech, and still has a long way to go in his overall recovery, we are very grateful to see all of these wonderful improvements, and expect to see more improvements as we continue with the natural chelation therapies to remove the heavy metals. We also expect further recovery through Hyperbaric Oxygen so although we do not have the funding for this we are making this a matter of prayer and expect this to happen because "With God all things are possible."

Additional Information:
Landin is my daughter's son. She relies on me to do all of the research (2000 hours in the last 2 years) due to her demanding schedule in caring for Landin and her business. My daughter and Landin lived here with me until he was recovered enough for my daughter to get her own place. This has allowed me more time for autism recovery research, although I miss seeing his smiling face every day. Although Landin has a medical doctor and a naturopathic doctor, we do not have the financial ability to pursue Landin's recovery through a D.A.N. doctor because we can barely manage all of his nutritional products and lab testing. However, due to all of the information posted online by parents, Defeat Autism Now doctors and dedicated autism support groups like Generation Rescue, [and Age of Autism]the "Do It Yourself" approach is possible and does produce recovery results!!!

I just realized that I left out the primary component of Landin's recovery: PRAYER FOR DIVINE GUIDANCE

[nhokkanen]

Cecily, thank you for writing about the swirl of complex emotions parents face in managing our children's interpersonal experiences. You are very wise to model adult friendships for your son, not to mention benefiting from them yourself.

When my son was 8, it seemed as if school provided excess social saturation and afterward he needed copious alone time to recover. Now at 11 he's more desirous of contacting individuals -- though now I'm totally uncool if I use the phrase "play date."

[Michelle Hatfield]

You are blessed to have these friends! Thank you for sharing your story.

I am currently and have been for the last 3 yrs, experiencing a lack of play friends for my 7 yr old high functioning son. He's a sweetheart like all of our kids! I was terribly hurt and sadden when people I thought were good friends would not insist that their children play with my son...I thought the interaction would be a great life experience for both sides. Apparently, they don't see it in the same positive way, huh? Sigh....

Fortunately at my son's school, his classmates are more accepting and even invite him to b-day parties. I'm so grateful for their kindness and friendships!

So, if you're a parent of typical kids, pls consider reaching out and insist that your child get to know, understand and who knows, even get to like a child on the spectrum. It can teach your child a wonderful lesson about compassion and acceptance of others.

Thank you!!!

[henderson]

About 3 years ago I was tired of planning our child's Sunday (the only day he didn't have something scheduled). The trips to the kids'/science/etc. museums was getting exhausting & expensive. I needed structure to Sunday (as our son has difficulties entertaining himself). I remembered what fun church was when I was a kid (I am the youngest and we stopped when my teenaged older sisters rebelled).

So, I convinced my atheist husband to go (much like I did with the DAN protocal: "because I said so"). The church we chose? The one with environment org from our city breakfasts, monthly social justice movie night (eg., "An Inconvenient Truth"), and the one that values and respects every other culture/tradition and never supposes itself as the one and only way.

What have we gained? What I didn't even hope for:

Community.

And, I thought we were just getting structure and something fun for our kids (and an hour of peace for us).

It is WONDERFUL. We are now surrounded by old, young, and middle aged like-minded people. Our child is at Sunday School and in the church choir. He is unconditionally accepted and valued (and I'm sure the other children's parents are saying "stuff it" to their kids). We now have friends that look out for us all over our neighborhood (and support our ASD fundraisers in a big way, lol). Older boys up the street who now actually invite him on playdates (about 2-3 years older). My husband is even loving it. AND we get an hour of peace/meditation/thoughtful services/beautiful music (I am most definitely NOT on the Sunday School Committee, LOL)... then coffee/cookies with like-minded adults of all ages/careers while the kids are running around the gym/playing hide-and-seek all over the church. I love having older people in our lives; our lives where unnatural and missing this before.

Have we had a real conversion in either of our beliefs? No, our beliefs are very much what they have always been (and we are thankfully in a church where it is okay to question).

Before this? We moved to a new country/city when my husband got his faculty job here, then we got pregnant right away with our autistic older son. Our social life consisted of: baby friends (most, but not all, ended up being friends of the moment), ASD friends who live over a wide geographic area and my husband's department friends. I am still not working. So, pretty small social life and not just for our son. But, no longer.

So, if you find a place of worship that is comfortable for your beliefs/customs/sensibilities, you will find people of all ages and backgrounds with similar sensibilities. And you may just find acceptance for your family (and an hour of peace).

[Roger Kulp]

Cecily,

If by high functioning autism,you mean someone who has all the features of autistic disorder,except for intellectual disability, I feel your pain.This is where I am on the spectrum.It is probably the cruelest of all the disorders to be saddled with.Especially if you are just barely verbal.

If your son destroys other peoples property, without being aware of what he is doing,as I did,it is next to impossible for either the child,or the parent to have any friends.Even harder if all the siblings are on the spectrum too,as is the case in my family.

sign lady,your suggestion sounds suspiciously like the same sort of forced socialization that Ceciley said didn't work with the Playdates.Been there,done that,it usually doesn't work.It doesn't work in a group situation.We don't do well in groups.It was my experience,that only a one-on-one floortime type approach works.Even at lunch time.One teacher or adult sitting down with each autistic kid is the only way to do it.

I never made any friends until I got online a few years ago.On the web,you don't have to worry about stuff like eye contact or limited verbal skills.Everybody is an equal,and I have made a small handful of friends with shared interests,like Kim who runs this blog, and a nationally famous classical radio announcer.

[bensmyson]

I wonder if it really matters whether or not my son plays with others. He doesn't seem to notice. On playgrounds he will run up to one or two on occasion and push them for some mysterious reason or another, other than that he really has no interest. When he leaves he misses the slide and the open space to run around, he has no idea he is leaving behind an opportunity to network his way up the feeding chain to boost his status.

I was one of the popular kids in school. Had my share of girlfriends twenty years ago, I have one old friend's phone number memorized, the rest I have to look up. Friends were accessories. My son may realize that.

I'd love to see him build a fort with a neighbor kid, want to camp out with a bunch of boys in the back yard, join a football team and have girlfriends. But I would imagine that there are parents thinking the same thing all across America with kids sitting in front of the TV or the computer, "normal" kids, happy to be isolated away from the high pressured dynamics of social inner-action with no desire to have a playmate.

It seems to me that a lot of parents make these kids go play, cram their social calendar with one activity after another, burning tank fulls of gas taking them from place to place.

Finding friends for yourself makes much more sense to me than trying to find some for your kids.

[Maurine Meleck]

Amazing that this should appear today. Joshua rang up 2 kids this morning that he has known for years(without my knowing he called) and invited them to swim at the condo pool. Both kids are NT and they came to swim and Joshua loved it. These kids accept him for who he is because they are younger, never knew a different Joshua. I was so proud of him.
maurine

[Laureen Forman]

To me, that is friendship and it's those who have not walked away from my family and want to be around us are those that are in our lives. I would do nothing less for a friend either because I care about people and would not shun a family because the child is different. And those are the parents who are teaching their children an invaluable life lesson of tolerance for difference. Kudos to those families as I expect your children to grow up to be kind and loving adults.

[Benedetta Stilwell]

I know I already had a tooo long of a comment already, but I would like to add one more thing.

I had an older daughter that was a social butterfly. Every night going somewhere, Every morning when she got her license she picked up half her classmates on the way to school. The older she became the longer she tried to stay out at night on the town. I am surprised that she made her grades in college for all her socializing (she could have been 4.00 student).

My son's calmer social life - was not such a bad thing, after my daughter finished with us, we needed a breather.

Yeah I know, something inbetween would be nice. But believe me between the two situations - I will take my son's!

[Stagmom]

We moved across town in June. When we met the neighbors, before we'd formally moved in, the wife said, "Oh there are lots of girls in the neighborhood and they're excited to meet your kids. We hear you have three girls!" Well - once the word got out my girls have autism, not a single neighbor has stopped by to say, "hello," let alone a child wanting to make a new friend. I feel like Hester Prynne.

[Tagamet]

Thank you Cecily for a great article. It is hard to remember that when our child has autism, in effect the entire family ends up with the diagnosis. From the point of view of social ostracization of course.

I find that I am now able to relate only to old friends, I wonder who our kids' old friends will be.

[candace passino]

great insight ..this is so real there really isnt kids knocking on our door either ..but we do have many cousins and it helps..so true about getting off the playdate coaster..totally relate to the strung out clown...candace

[Benedetta Stilwell]

Since the birth of our son we have lived in three different places.

For 20 years we lived in a rural area, yet the area had a rather large town in north west Kentucky,

For two years we lived in Freeland Michigan,

Now we a very rural area in south central Ky.

My son as he grew up in north west KY had three friends. 1) my friend and neighbor's grandson 2) My son's best friend and a neighbor that he met in school and then on the school bus in the fourth grade. 3) a boy he meet as they waited in the gym for school to start in the mornings, and waited for the buses in the evenings.

Four boys inseperable, halloween parties, sleep overs, camping, great days

At the start of my son's freshman year we moved. My husband was wanted by a very large chemical company and My son's seizures were getting worse! I wanted to get away, I had tried to get help all over that ares including the big city of Louisville. I found the help was just as slow in Michigan. Two years were lost there. What friends my son had were his old friends. They believe it or not kept in touch! When we visited my parents we had to drive another two hours so Ben could have sleep over with his friends.

During my son's junior year we moved back to where my parents live and I grew up. My son was also finally dignosed with epilepsy and it was finally being treated. (We might not have moved at all if he had been treated in the first place) My son and his friends continued to visit, go to a couple of amusment parks, and sleep over at our house or thiers.

My son made friends at his new highschool here but nothing that lead to anything outside of school. The church, however, we attended had a very good youth group, and had even hired a good youth director. They went places that all young people like to go too. to a couple of amusment parks, a couple of youth retreats, and several long trips to the Carolinas, and Tenn to help poor older people, and disadvantage youth. 9 and 10 grades were terrible, but grades 11 and 12 were great!

Now after high school, no friends, no outside interest.

I spoke to my sister-in-law about her autistic twins and it is the same thing. She says that her boy's friends had outgrown them.

But I think that close friends are mostly for the young.

[Cathy Jameson]

When I see normal kids in town or at social events, my heart aches for the 'what could have been' moments. Shouldn't my son be able to enjoy a simple friendship with an age mate? Wouldn't it be so much easier to plan outings without a sensory-defensive child? Couldn't people be a little bit more understanding and accepting of my situation?

Thankfully we too have family friends that do accept and do support us. We have four typical children (and their friends) to mix in our son's day too--they don't question, complain or demand changes. They offer help, praise and extra love in small bits during our long and sometimes stressful days. I'm not responsible for those beyond our four walls, but I'll still remain hopeful that the world can show honest respect for families like mine.

[sign lady]

Cecily,
It's wonderful that your friends have taught their children the importance of being a friend to your son. But your post made me wonder what his school is doing for him socially if he's eating lunch alone every day. With autism numbers on the rise (along with other conditions that impact socialization), he can't be the only child his age experiencing social struggles. Lunch period is a prime opportunity for him to have social interactions (which he clearly craves, based on your post), and I would strongly recommend you advocate for your school to regard lunch time as essential to his development as any academic period - and articulate goals and objectives with that in mind.

One possibility is an adult-supervised lunch table for a small group of children - either in the cafeteria or in a classroom if the cafeteria is overwhelming. This may lead naturally to playdate opportunities outside of school.

Your at-home social network sounds like a Godsend for your son, but you may want to revise his IEP to ensure that he receives adequate social support throughout the school day - lunch time included!

[dugmaze]

Great article. We do the same thing.

[Vic's Mom]

Fantastic and right on! As a mom to a beautiful 8 year old boy on the spectrum, I identify completely. Nice to hear someone else feels that way too! Thank you for this.