It Takes A Village


I don’t often talk about all the family help we have with Harry.  Don’t get me wrong, I appreciate it (Ohhhh do I appreciate it), but I often feel guilty talking about it.  I have friends who have no family support, or worse, have downright hostile, judgmental extended families who make life more difficult.  I have friends that are single parents with no spousal support, who are raising more than one child on the spectrum.  Friends whose own parents hint at institutionalism to make life “easier”.  So I usually keep my mouth shut.  I am going to write about My Village today though, in hopes that others will share this with their families and open their eyes to what raising a child on the spectrum should be like.

My father grew up in Europe on a farm.  He lived a humble and communal life with his parents, six siblings and all kinds of relatives, until he won a college scholarship to study in America and met my Mom, who was born in the Bronx.  Even though my Dad’s family was thousands of miles away and we rarely saw them, he instilled in us what they valued, leading by example.  He turned down a lucrative promotion because it required too much travel away from us.  He was home at 5:45 on the dot each night so we could eat dinner as a family…two things I have not done with my own family, because just maybe I had my priorities skewed. 

My Mom grew up a city girl.  To this day she doesn’t do well driving in places without grid streets.  She retired a NYC school teacher who ran her own type of charity…I would often visit her school and see my old coat on a girl in the hallway, there were families she brought groceries to each week, and there was even a family of five she took in for a time so they could get back on their feet. 

Growing up, I had two dedicated, fully supportive parents.  They never missed a swim meet or softball game.  They told me I could do anything and be anything I wanted (someday we’ll get into the part where I was convinced I would be a rockstar).  They weren’t as permissive as I would have liked (I am so sorry 8th-grade-boyfriend that my dad hung up on you every time you called), but I knew they would always be there for me.

My parents had retired and built a place on my father’s family’s land by the time I had Harry, but they arrived before the birth and settled into our in-law suite because they were going to watch the twins while I went back to work.  By four months when Harry’s exorcist-style puking began, they were the ones cleaning it up all day.  After his six-month shots, they knew something was wrong too.  They would watch R. babble and listen to Harry scream “AHHHHHHHH”.  And by diagnosis day, they were not at all surprised. 

What may be surprising to others is what happened next.  We went gluten-free-casein-free-soy-free cold turkey, but I had no idea what to actually feed my child who ate milk, cheerios, chicken nuggets and gyro meat.  My Dad loves to cook. As we got results from lab testing, my Dad hopped online and researched which foods would combat inflammation and scavenge free radicals.  He made an organic ground beef mixture that had every veggie (painstakingly diced by hand) imaginable in it and would freeze it in batches as it became Harry’s staple. Cholesterol too low?  He would add organic eggs and bacon to the recipe.  Constipation?  Eggplant, beans, and extra olive oil went in.  That mixture brought Harry from failure-to -thrive to a healthy height and weight and began the healing on many levels.  

When he wasn’t cooking for Harry, he was sitting teaching Harry baby signs.  It shouldn’t have been a surprise to us last month when we discovered Harry could read sight words…he’s been shown them on flashcards and dvd’s most of his life.  They watched speech dvd’s and he would put his face in front of Harry’s exaggerating the mouth movements to form certain sounds.  They had computer time together, learning all kind of hand movements to children’s songs on YouTube.

Meanwhile, my Mom ran Harry around to speech therapy, occupational therapy, physical therapy and oral motor therapy, so my husband and I could work to afford Autism.  She sat in the room and learned what to do, and practiced the oral motor exercises with Harry twice a day, every day…something I couldn’t wrap my head around at the time as I had two other toddlers, endless Autism research and a fulltime job to contend with.  She did HBOT with him.  She taught him how to do puzzles, worked on threading beads on a string, let him paint on an easel, taught him how to pedal a trike.  She did brushing techniques, pushed him to try new foods, and generally did a lot of the unrewarding parts that help heal our kids. 

Don’t get me wrong.  We are hands-on parents in our own right, but with three little ones, the one who needs the most attention doesn’t always get it.  It takes a village to raise a child with Autism. And my village was all-in.  My brother and sister, and my sisters-in-law jumped in too, providing any assistance we needed.  They learned how to sign, they babysat, or just simply listened.  Which was sometimes the best thing of all.  They never once made us feel like Harry wasn’t a full part of our family.  He was accepted and loved, just the way he was. 

Through these early years, my husband’s parents lived nine hours away from us.  They were not as involved in the day-to-day, but they were fiercely supportive in other ways.  There was an $11,000 month-long super intensive program I wanted to try.  My in-laws whipped out a check without being asked.  Our septic system gave up…guess who was there to bail us out so we didn’t have to cut back on anything for Harry?  To this day they stash extra money in his 529 account, and now that we live closer, they too have a special bond with my son, learning signs so they can communicate and making sure he gets all the tickles he asks for.  They marvel at all he can do and how far he’s come.   They have opened their minds to views I am sure they never would have considered a few years ago.  My husband’s extended family often visits in the winter, and we get nothing but love from them too.  Efforts to engage Harry abound, and he is never left out of any gift-giving or celebration.  They ROCK. 

I’ve got a great village.  I can’t imagine it better than this.  At times, it makes Autism…not easy, but definitely easier.  To have an invested team behind you, taking turns running the ball with you and cheering you on from the sidelines until you reach your goal—recovery—is an amazing thing.  I just wish everyone had what I have.  It made the early years bearable—splitting things up and working as a team. 

So, here is my plea.  Grandparents.  Get involved in any and all ways you can.  Bond with your grandchild.  Get to know—really know—the child with autism.  It is hard, but it is ultra-rewarding too.  Support your sons and daughters as they try to heal their very ill child.  Offer to babysit.  Slip them money for supplements.  Your child will be grateful for the money as Autism is expensive, but will also feel like you’re fighting with them, supporting them, backing them up in their time of need. 

Brothers and Sisters, support your sibling.  Be there to listen.  Don’t judge.  Don’t make comparisons or comments about behavior…I mean, do you really think your sibling doesn’t notice their child flipping a light switch on and off 300 times?  They do.  They are really, really grateful when you pretend you don’t.  Learn how to communicate with their non-verbal child.  Find something special to connect with him or her.  Encourage—and by encourage I mean make it mandatory — cousins to include the child with Autism at birthday parties.  I mean, it may be the only party he or she is invited to all year.  Put yourself in your sibling’s shoes.  How would you want your family to treat you? 

I promise you that your efforts will be deeply appreciated.  And will not be forgotten.  Reach out, make amends if you need to.  Start today.  Your village can be an amazing legacy.  It takes a little effort, but that effort will be rewarded many more times over than you realize. 

My parents just returned from a trip to Europe.  I brought Harry to their house the minute they returned.  He burst through the door and flung himself in my father’s arms.  No words were needed to convey how much he had missed him, or how glad he was that he was back.  That bond is irreplaceable and they are both better off for having it. 

I leave you, dear reader, with a question…I hope you’ll comment and that the comments will be read by grandparents, aunts, nieces, nephews, brothers, sisters, uncles and cousins and that action will be taken and villages will be built, repaired, expanded as a result. 

What is the one thing you wish your family would do that would positively impact your child with Autism?  What do you want your village to look like? 


Goddess   xx

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58 Responses to It Takes A Village

  1. KB says:

    My mom is my village. Financially, emotionally, in every way I need her — and I could have never imagined how much I’d need her, having become a single parent six months pre-diagnosis — and she doesn’t complain. She just gives and gives … and gives. Her bond with my girl is amazing to see.

    On the other hand, there’s my dad. (My parents are divorced.) He doesn’t spend a lot of time with my girl, but I don’t think that he’d get it – get her – even if he did. He is the grandpa waiting for big leaps like complete sentences and potty-training, and he has no idea how many beautiful steps he’s missing.

  2. Tommy's Mommy says:

    We moved to be close to my husband’s family, our main source of support since T was diagnosed. His parents are gone 6 months out of the year in Florida to escape the cold and to be close to my sister-in-law and her perfectly developed little girls. They have been supportive in many ways, mostly financially. However, my MIL will never feel comfortable of T. She is, by nature, a woman who succumbs her life to anxiety. She tries to have a relationship with T, but it is just too hard for her to chill and be present with him. As many spectrum kids, he doesn’t know how to navigate tension. Suffice it to say, it is awkward and forced. It hurts. My family is non-existent in our lives. It is hard.

  3. Diana Gonzales says:

    To all of you with a graet village, please don’t feel guilty. I am so happy for you and I choose to believe that all the parents going through this alone wouldn’t wish this on you. It actually makes me feel great that you have this support. I’m doing this in my small village of 3. Me, my NT daughter, and my autistic little boy. Yes, he plays his part by trying, and try he does, everyday. My children have no grandparents, a horrible story in itself, and I moved 1500 miles away from my home and all my family so LoRenzo could be educated and not babysat. It’s a struggle, its hard, and sometimes the freight is consuming ; but then I cry in the shower ( the only time I’m EVER alone) and I press on. I truly believe you do the best with what God gives ya. We are broke, but my son doesn’t have seizures, or asthma or anything that requires hospitalization. Everyday is a learning opportunity, from sun up to sun down. Sure, we have a long way to go, but we’ve come so far. I would totally love a village, but life can’t end because I don’t have one. I pray God blesses each and every person in your villages beyond measure, because what they do is truly out of Love, they really don’t have to. My family chose not to.

  4. Momma T says:

    Beautifully written & wow- your village is AMAZING! I’m so glad that you did share, because it helps others know what true support IS!

    We are one of those families whom have really struggled, being AWAY geographically from our parental units, and only half of that equation really NOT supportive. For half of our family, our family dynamic has made glaringly obvious the lack of any positive relationship… it’s the big mute ELEPHANT in the room. Sadly, we just do not subject ourselves to much at all, because the energy transferred is more negative than indifferent. It’s a sad reality.

    All that said and we have built our own VILLAGE. When I first wrote in raw despair to simply get it off my chest– I didn’t see how to survive, as a parent to 4 autistic (and other disabilities). I had been familiar with special needs, as my daughter was born with Trisomy 21; however, that my friend was a “cake walk” compared to when Autism settled in comfy under our roof. So, we built our own VILLAGE & created family from friends. Many of them on the same walk as us. I recently posted on our blog how I see communal living as lacking for our American culture overall.

    Anyhow, my husband & I are now set on creating that VILLAGE for others through our center
    We are just getting started & by God’s grace we will make a difference in keeping other families supported & not hopeless. It’s been a JOURNEY!

    Thank you Goddess for SHARING– that’s what the VILLAGE is about & wow, your village is simply breathtaking. The pic of Harry & Papou makes me misty eyed with happy tears. Bless you!

    Momma T. of Detour Autism & Founder of The Village Circle Family Support Center

  5. PS – the pic of Harry & Papou is PRECIOUS!

    Momma T. of Detour Autism & founder of the Village Circle Family Support Center

    • Goddess says:

      Thank you…honestly, I put it in at the last minute and I didnt have a recent one of both of them. This is when he was two and so sick. You can’t see it, but he had a huge rock hard belly. His smile pulled up on one side like someone who had had a stroke–its a little visible here, and his eyes….wow. Harry looks totally different now. So much healthier!!

  6. Anissa says:

    You are so lucky to have supportive and helpful family members who are willing to roll up their sleeves and get down and dirty to recover your son! I went through lots if anger and loneliness for several years after the dx. My MIL told me to never expect any help from her and to not expect a penny when she dies. She told me the next day that she loves her grandchildren all differently – and guess where my son was on her list. My already emotionally-unavailable mom didn’t know how to support so she didn’t talk to me. My sister told me I needed to just accept things and stop being sad – my husband and I just had lost in the genetic roulette and i needed to face facts. All blessings in disguise because I became a stronger woman and mom without relying on them! But you are truly blessed!!!

    • Goddess says:

      Shame on your family. Really. But I love your attitude. I like to think I would be the same way without all the support. You GO!

  7. Lady Dy says:

    Its me Helen, Diane (Michaels mom from Sunday gymnastics with Anthony. I cried throughout your article. It brought back so many memories. Michael asked me why I was crying and I stopped for a moment and remembered there once was a time he may not have noticed my tears and surely been unable to ask a why question. I see the awakening in Harry and I think you and your village are AMAZING!! Keep up the good work.
    Will you please send the info links we talked about. I am not on face book , but included my email.

  8. mamabear TMR says:

    I love your village!!!!! Your family is kind, supportive and truly amazing. The apple doesn’t fall far from the tree. You are a beautiful soul Goddess and it’s because you have such amazing parents <3

  9. Melinda says:

    I am blessed like you to have a wonderful supportive village … I too feel guilty at times knowing just how fortunate I am … Wonderful post.

  10. Holly Haggan says:

    I too am blessed with the best village. My parents are my lifeline. They have never missed an opportunity to help with my kids or help me. They truly are the only reason I am sane in this world of vaccine injury (aka autism). I love them more than they will ever know and wish all families were this supportive! Thank you for sharing!

  11. Lisa Kelly says:

    Oh, what i would give for “a village”, i am in tears here being a single Mom with a daughter who is very severly “impacted” by autism. The isolation, and all……that is why i have set out to do what i do, so others don’t feel that way.

    God bless you lady for sharing this post, it really “hits home” and i am sharing for all…


  12. theBrother says:

    We love and miss you guys so much! Harry is such an amazing little man… and you guy know you only have to call!

  13. Paddysmama says:

    We are blessed too! I’m a single parent Of a 3 year old dx pdd. I have endless support from my tiny village. Numerous sounding boards and countless listening ears. My mother as been on board since day one and offers her help even at times that is inconvenient for her. She watches him over night so I can afford autism. It has taken my father a little longer but he now gets it. My family includes my son is everything and is soo patient with him. They love him for him and he has a vy special bond with each and everyone of them. 🙂

  14. Carmen says:

    Goddess, what a beautiful story. It seems that Harry has brought out the best in all of your family’s life. I’ll bet their compassion, patience and love meters have grown immeasurably. What a wonderful gift he has given them as well. Recovery is around the corner, I’m sure.

    • Goddess says:

      Hes made me a better person, that’s for sure. We’ve got a ways to go recovery wise, but we are headed in the right direction!

  15. Sylvia Fogel says:

    My mother lives far away but is always at the ready to lend a helping hand when needed, to come stay with us, to give some special time to our older typical child, who often needs a little extra TLC, given that her brother gets the lions share of our efforts. My husband’s mother is supportive financially and in spirit. Her own anxieties make hands-on work more challenging for her. But she is there. She cares. One moment that was particularly important for me was around the time of diagnosis. My mother gave me something many other people could not. She sat with me (by phone) and just cried with me. She let me cry and cry and cry and she didn’t tell me to stop, or that it would be ok or that “there is so much that can be done”. She accepted the tragedy for what it was. A tragedy. My beautiful, previously typically developing son, lost to the grips of autism. We have brought him back to us in degrees. There is still a long way to go. My mother has remained supportive of my research, my biomedical interests, the therapies, all of it. And she has always continued to let me have the room to mourn and grieve, amidst all the effort and hope for recovery. It has meant the world to me.

  16. Melissa Vega says:

    We have no family close by as my husband’s job relocates us every two years either domestically or internationally. However, our families have been very supportive of therapies and diets. They ask lots of questions and while they don’t understand all that we do, they support our decisions. It’s heartbreaking to read stories of families that are judgmental and unwilling to help/learn about autism. You are lucky to have an amazing village! I would love to have family close by to help out! And I would also love to have the meatball recipe! That is one of the few proteins I can get my little one to eat!

  17. Guilded Thinker says:

    I loved this one, Goddess!!! My family is also supportive, though perhaps not to the extent yours is. Wow!!! But my mom and dad babysat any time we needed them to until my mom had her last stroke. They still offer, but it’s just too much for them. Both of my brothers are involved with the boys. My younger brother had a tough time at first. He wanted badly to connect with Little E, but was afraid of “setting him off” into a meltdown. Slowly, though, he realized Little E is very much like him. Shy, quiet, with a razor-sharp sense of humor. And last night, at the tail end of a very busy Mother’s Day, Little E climbed up on the sofa and snuggled up to my older brother, laying his head on Paul’s shoulder. It was a beautiful moment and my brother was floored by the connection. 🙂

  18. Money says:

    Beautiful blog Goddess! Thank you for writing this! Your family is a loving example of how to support families living with autism. They must be over the moon watching Harry thrive 🙂

  19. Saint says:

    Sobbing. I love you and your village <3

  20. Jen says:

    I am also fortunate enough to have a very supportive extended family, I honestly don’t know how those who don’t have a village manage. We made the decision to move back to our home town to be near his family and my family (which meant my husband leaving his job and taking a job that was very low paying because we moved from a large city to a rural town). Our son couldn’t even go to a regular daycare and was constantly tantruming, so it was a necessity for us. I was trying to finish college and decided I would rather commute 2 hours per day than live that far away from my “village”. My mom and I didn’t get along before my son was born, but we quickly saw that we had to mend our relationship and accept each other because I needed the support and she wanted to be in his life. Sometimes the village isn’t readily available, but we have to make choices and sacrifices that bring us closer to our village or create a village our of friends, people from church who have a big heart and time to help, or finding frequent respite care. The most important coping strategy I have used in dealing with his autism is to lean on my village.

  21. Lisa says:

    p.s. The meatballs sound great! Would the Thinking Moms be interested in posting their favorite recipes? 🙂

  22. Lisa says:

    What a great post! The tears are streaming down my face. Even if my husband and I had 2 typically developing kids, we shouldn’t have expected much help from his family. What they know about autism is what they’ve learned from watching FoxNews. Our youngest is 12 and they still don’t think a gluten-free diet is worth the trouble because they haven’t bothered to read anything about it. When I broke my thumb and my husband needed to take me to the E.R., he had to explain to his mother that it would be much easier for her to watch the kids and put them to bed at our house instead of breaking routine and leaving them at her house while we were stuck at the hospital for who knows how long.
    The one thing I wish they would do is to care enough to learn more on their own. They are skeptical of everything I try to tell them about autism and Special Education. It’s frustrating, depressing and exhausting sometimes to either feel alone in the fight or to feel like we’re being judged for what we’re trying to do for our children.

  23. shannon says:

    Unfortunately, this is hard for me to comprehend. Your family sounds incredible. My fantasy escape is to start a surf school/autism commune in Costa Rica with other families.

    • Goddess says:

      OMG–TMR talks about a TMR compound ALL the time!! Start your surf school!! I’ll sign Harry up!!

  24. I wish friends and family would realize how hard things are and offer to help without feeling “sorry” for us.

  25. PoppyTMR says:

    I love this!!! I have a small, but fantastic village! My Mom and brother have been by us from jump. They have been {and continue to be} involved with my guys and love them unconditionally! They deal with my rants about corruption and pharma. They travel over 1000 miles for a birthday surprise or to watch them surf. They listen to me ramble on about allergens, pollution, dirty food, methylation, and poop. Although we don’t currently live in the same geographical village and I am flying solo with two kids on the spectrum, they are integral parts of The Fellas lives. I am so fortunate to have them.

    PS – Can I get Papou’s recipe for those meatballs??? Hook a gal up!! 😉 xo

  26. BB says:

    Lucky you. Your story made me feel even more sad for how horrible are families and “old” friends have been. We are invisible in our community because there are too many kids with autism and so many other conditions and it is the new normal that others are relieved is not their problem.Money–house is in foreclosure and credit card debt is huge. Work? I wish I could.This has done so much damage to all of us as individuals, as a married couple, as a family–we are exhausted and weary with little left for any chance for normal anything including the ability to have the simple joys and pleasures and good memories we had always hoped for.Lucky you.

    • Goddess says:

      I am sorry…this is the exact reason I usually keep quiet, but I felt like maybe it would help in some way sharing this. You are right how much damage Autism does. It has left its mark here as well, in ways that I didn’t share above. The one thing I refuse to let Autism destroy is my attitude and outlook on life. Prayers for you and your family BB to make it through such a difficult time.

  27. Nicole says:

    I cried as I read this. It warmed my heart to learn about your supportive village. Sadly, I am a warrior mom who does not have that support. I am the product of a West Indian family that just does not understand autism. I must also say, that I just don’t ask for help. Your words have now encouraged me to go out and find my own supportive village!


  28. Deborah Z. O'Leary (@REALMOMMA2155) says:

    Goddess, this brought back so many memories of my parents and my Mom in particular and how they supported us emotionally and otherwise when Connor was first diagnosed. We miss them both so much, but their unconditional love and support has sustained us for the last ten years. Our village is smaller, but their spirits are here getting us through each day.

  29. Sugah says:

    I would appreciate it greatly if my family would just ACT like they’re interested in our life with autism. Other than my dad who occasionally asks how my son is doing with this or that….no one ever EVER acknowledges it in any way. In fact when I bring it up….they change the subject as fast as possible.

    • Sugah says:

      I might add that I *otherwise* have a very loving family. They just can’t/won’t/don’t provide me any ANY support (not even moral support) of any kind whatsoever.

      • Goddess says:

        🙁 I am sorry. Make them read this and tell them I’m going to sic Papou on them. Love you Sugah!

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