What do you want to know?

For Hannah

It is evening and I am finishing the dishes. An ordinary weekday night, with no meeting or class or event we must attend. I am going to settle in with a favorite TiVo-ed television show or maybe a book or maybe email a few friends after the dishes are loaded in the dishwasher. Hubby has a game on and it might be nice to join The Kiddo and The Middle Boy and The Youngest and watch it together. The phone rings and all hope for any of that is gone—it’s an “autism” call.

I was a local Autism Society of America chapter president for over six years and took these calls on an almost daily and weekly basis. It was more often when something about autism was in the news. Now, I am retired from the chapter but I still get an occasional call. I feel obligated to at least point the caller in the right direction, whether giving them information about the current support group or an agency or a physician who might be helpful. My phone number is out there, on some outdated website, but I don’t want the caller to be frustrated with a worthless call—I want to help them in some way.

After explaining I am no longer active with ASA as a chapter president, I tell them I still may be able to help them and ask—what do you want to know? The question or concern is addressed and then I explain I am the parent of an adult with autism and they have further questions. One of the reasons I started writing this blog was to answer some of those questions.

Often, they want to know about a school district or a physician and I can help them quickly. Sometimes, they want to know where to get help for a grandchild or a niece or nephew or are moving and want to know the best place to live in our area. They want affirmation of what they are doing—I try not to judge but do try to be honest. They want to know how to handle a school district or what recourse they have if they are not happy with a teacher or treatment. I try to be honest and try to be calm. And I try to be supportive. Sometimes, they just want someone to listen to them.

Many want to know how Hubby and I have stayed married when the divorce rate for couples with a child with autism is so high. Its luck, I think, and how we look at The Kiddo in the grand scheme of our family. We are all on the “Kiddo Team” not on the Hubby or Me team and we do not blame each other. Blame can swirl around us and our family but we do not blame each other and are united. We respect each other after a long time of dealing with autism and feel much the same way about a lot of things. We work through the problems together and that has also brought us closer. We go out together regularly and when our kids were really young, had a “date night” with movies and popcorn or music on our stereo. We try to be a couple and not just Kiddo’s and Middle Boy’s and Youngest’s parents. Make time for each other because if you don’t, there won’t be time.

Others want to know about our other kids and how they are doing. Both The Middle Boy and The Youngest have Masters Degrees at this point, with more education probably to follow. They both have had their own issues and we worked through them just as vigorously as we did for The Kiddo. They are kind, responsible young men and are more mature and understanding than many of their peers by having a sibling with a disability. Are they resentful of all the time and energy we had to spend on The Kiddo’s and not on them—maybe. But during The Kiddo’s  illness a few years ago, they both spent time in the hospital with him and helped us talk through the treatment we should use. We came together as a family and it’s obvious they love him unconditionally. So I think I can answer this way—they are doing well for the most part.

Some want to know if I have any life outside of autism and I tell them I have always worked around my own career and I do what I can to stay involved in my profession for my own sanity. I’ve worked at least part time since The Kiddo was born. At various times, I have worked full time or had three part time jobs or been in graduate school and have worked in Hubby’s office as well. Now, I tutor NT kids, teach an arts specialty class of adults, speak about art and autism and am a moderator for my professional society’s website. I have been supportive of  those in the arts with developmental disabilities and have been helpful, through my professional organization, to facilitate dialogue between both of my worlds. I take the occasional class as well to keep my own “chops” current. It is a matter of stepping away from autism so I can be fresh and not resentful, myself, rather than any selfishness on my part. How can I be there for The Kiddo if I am soul-sick and needy? My art and years in the arts are part of me and I cannot give them up, even for My Kiddo.

I am not as involved in autism advocacy as I have been in the past simply because I don’t have time. I choose to do what makes me happy now and where my talents lie, whether helping a choir of disabled adults from New Jersey when they visit our state or telling others about our life with The Kiddo. We have always tried to put a face on autism to help others understand and this has become my passion.

The parents who call me by mistake also want to know—does it get easier and the answer is “yes.” You have to be willing to do everything you can for your child and then be at peace you DID EVERYTHING you could, no matter what others say to you. No guilt for whatever happens because, despite what some may tell you, you really can’t control the outcome. Most all children with autism get easier to live with and work with and some may even have some degree of independence, but some do not. You have to be okay with that and know it may be a possibility.

We are still here, still fighting for our son and others like him. We have more time in our lives for things other than autism and get more sleep and are able to be a bit freer so we are a “success” in that regard. And I hope that gives people hope. But we will always live in the autism world.

So, what do you want to know?

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The Holidays are Coming

When I began this Blog, my thought was to share some ideas and perhaps a solution or two from my experience as a Long Time Autism Parent. Since it’s right before Halloween, I’d like to share some of my thoughts about holidays.

Ask anyone with a disabled child, and they will tell you the most difficult time of year is fall. School begins and the holidays approach, commercials bombard us with pictures of the “ideal” family and what we should be doing, buying, feeling, etc. Our “normal” extended family reinforces the idea we will never experience and feel what we should. Our worship community may or may not include us in the celebrations. We’re lucky if they do and if they don’t, we may be lucky anyway.

Schedules are different, food is different and we, as parents, are different in our stress level. Perhaps, we have things under control during the regular year but as soon as the first pumpkin appears in the stores, things go to heck in a hand basket. Grandma insists one little cookie won’t wreck the diet that seems to be helping. The school district takes every holiday–known and unknown–and wrings every day off it can, disrupting the rhythm of the days and the change back to Standard Time doesn’t help either. We may be trying to figure out how to afford the therapist AND Santa this year. As soon as Halloween is over, our neuro-typical kids rev up the “gimme machine”, which doesn’t re-enforce their disabled sibling’s behavior program. None of these things help matters with our kids in day to day living. And we must live in the day-to-day, in addition to getting ready for the holidays.

Our Kiddo is in his 30s and our holidays have evolved into a time we love and look forward to, but that was not always the case.  If I had known then what I know now, things would have been different.

One good thing for us has been the “social story” way of managing holidays with someone with autism. For years, I explained what was happening to Our Kiddo as the seasons changed, using pictures, story books and decorations to do so. I have long had–because of my profession as an arts educator–a collection of decorations for every holiday and decorate our whole house. For the last several years, I have put up our decorations, without some of the stories and he has done just fine, acting appropriately for each holiday situation. Seeing the silk wreath of brightly colored autumn leaves means ‘turkey” to him and the familiar jingle bell wreath for his bedroom door means “Christmas” just as hearing carols does for someone else.

Music was important to us at holiday time and we began to seriously collect Christmas music the weekend Our Middle Boy was born. To keep my mind off being in labor, we browsed at a record store and found a Swingle Singers Christmas album. We brought the album home with the baby and the Kiddo settled down and rocked to the music—it was like magic! Our holiday collection of albums and CDs grew and grew and grew. We add to the collection every year and look for unusual things all will enjoy or giggle about.

We celebrate our own holidays with our boys in addition to the extended family events. It was important to us to give our sons a sense of our own family, and having our own holiday traditions helped. Such as, if we are not hosting Thanksgiving, we have “faux” Thanksgiving and we may or may not have turkey. It may be before Thanksgiving or right after.

Many parents struggle with gifts for our kids with autism–what to do, to buy or to suggest. Some are unhappy when Grandma gives what she thinks our children should have instead of what we suggest. I, too, have long struggled but have come to grips with some strategies for looking at the folks giving him gifts. I was delighted when one of Our Kiddo’s uncles gave him a huge tin of gummy bears–something he LOVES. His Uncle F was thinking about what he would like. When Grandpa gave him yet another cashmere sweater, eventho I have told him over and over he is tactile defensive, only wears acrylic sweaters, not to mention he is a slob and needs something that can be washed regularly, I didn’t think about the actual usefulness of the gift. I thought about Grandpa giving him the same gift as all his siblings and cousins, trying to treat him the same way because he is his grandchild as well and that touched me. One of his Grandmas gets toys appropriate for three year olds and I am fine with that. Another Uncle got him a Lava lamp one Christmas and a disco-ball the next–Our Kiddo’s room is groovy! Of all the gifts, my favorites have been from his Auntie C–musical water globes–and he displays them proudly in his room. Even if the clothes can’t be worn, or the toys are not what he likes, I am fine with it because they have thought about him. For so many years, the extended family has not bothered with him because he is difficult or they have to think outside the comfortable box they are used to getting gifts–shopping for him is work. Some still behave that way, thinking no one will blame them for the glaring oversight. But, to ignore Our Kiddo, is to ignore a family member at the time of year we hold the concept of “family” in high regard. I still struggle with this, after so many years because he is my son, he is worthy of note and IS part of the larger family.

Speaking of Santa, all of us have had to come to the conclusion the Mall Santa will not always work for our kids. Our ASA chapter used to hold a holiday party every year and a chapter dad would dress up so we could finally have those Santa pictures. It was wonderful and HE was wonderful and had the patience of Job. Our other kids knew who it was and we have wonderful pictures of them with “Santa”, some very silly, but very much a part of our holiday traditions. We laugh about those parties, filled with pizza and cookies and Santa bringing gifts we brought. It was so much fun and so normal to have a holiday party with Santa.

Many parents have their ASD kids on highly structured diets. It is a real power struggle to have others accept the idea of the diet, whether one is cutting out dairy or wheat or limiting sugar. When others host holiday meals, that’s when the trouble begins. You can ask for the variations, bring the food yourself or feed the kids before you come. In any case, someone will be upset. We have to do what is best for our situation, that particular year. Some years, throwing the diet out the window may be the answer and others, coming after dessert for the gift opening only may work. I can only tell you we’ve done all of the above and then some–I don’t have the answers for what is best myself.

We still use the New Years holiday to center our family, spending it much the way The Hubby and I did when the boys were young. We couldn’t get a sitter for New Year’s Eve one year and spent the evening playing board games and talking about each child, our wishes and hopes for each and plans for the coming year. We started out trying to make a special time from an unfortunate situation and it evolved to include a wonderful dinner, games, movies and everyone enjoys it. The Boys play games with us (sometimes bringing their Significant Others), Our Kiddo watches the Marx Brothers or Fred and Ginger with us and we have a good time, together. It was, and is, the only holiday, all year long, that is truly our family’s holiday. Even if we have plans for New Year’s Eve itself, we try to have “our” time set aside sometime within those few days for this tradition. This has been a way of holding our family together when all sorts of outside factions seem to rip it apart.

Gallows Humor and Chuck Norris Jokes

The older The Kiddo gets, the more I laugh……. laugh at our crazy life…..laugh at his autism-y quirks….laugh at all the stuff, if someone else was telling me, I wouldn’t believe but if an Autism parent was, I would.  Let’s face it, folks, some parts of our life are hilarious! Well, maybe not totally hilarious but darn funny….a day later and after the fact……..the next year and after you’ve moved…….or after the carpet is cleaned. Poop stories are especially funny a decade or so later.

A friend of mine told me she had a wonderful nursery for her two sons.  The eldest *Joel,* is NT and she had such a great time picking out great furniture for his baby’s room…..a beautiful set of changing table, rocker and crib, all a beautiful, sturdy white wicker. It was such a lovely cocoon of calm…..the baby’s room was her favorite room in the house. When *Jonah* came along (with autism), she regretted that damn wicker furniture every single day because he was a smear-er….a feces smear-er….and she couldn’t keep it clean. She finally gave up, went to Wal-mart and bought the cheapest and easiest to keep clean crib she could find. She pitched the wicker set….no one would want it anyway! *Sophie* and I couldn’t stop laughing when she told me about the wicker crib….. her story about questioning a Wal-mart employee about the durability of the finish when using Lysol caused me to laugh so hard, I hiccuped!

When my boys were in Junior High and High School, Chuck Norris jokes were popular.  If you’ve never heard of them, here are a few for your enjoyment (and the reason for me telling them will be apparent in a bit):

There used to be a street named after Chuck Norris, but it was changed because nobody crosses Chuck Norris and lives.

Fear of spiders is arachnophobia, fear of tight spaces is claustrophobia, fear of Chuck Norris is called Logic.

Chuck Norris and Superman once fought each other on a bet. The loser had to start wearing his underwear on the outside of his pants.

When the Boogeyman goes to sleep every night, he checks his closet for Chuck Norris.

Chuck Norris doesn’t wear a watch. HE decides what time it is.

Chuck Norris doesn’t read books. He stares them down until he gets the information he wants.

My Kiddo, like many people with autism, has OCD issues.  And also, like many people with autism, it appears he isn’t paying attention to his surroundings but he is, and don’t you forget it.

I’ve mentioned in a previous Blog we re-did our kitchen a little over ten years ago and decided to resurface our cabinets instead of gutting the whole thing, mainly because we didn’t think he (WE) could handle two or more months of upheaval. The cabinets and floor plan are essentially the same as before. It was a mistake to do that because he………wants things the way they were ten years ago.  I have beautiful solid surface counters but need to have heat resistant pads on the counters near the stove and oven when I cook so it doesn’t crack if I accidentally put something on them….and Kiddo moves them….when I’m in the middle of cooking……..as soon as I leave the room……answer the door or the phone…….check my email….change a load of laundry….or in the middle of the night. The Kiddo wants things a certain way in our home.  He is willing to wait for minutes, hours or even DAYS to change things in the kitchen or living or family room back to the way HE thinks they should be. This where the Chuck Norris jokes come in……Chuck Norris doesn’t sleep, he waits…..and that’s Our Kiddo……when he sees something he wants to move back to the way he thinks it should be…..Kiddo doesn’t sleep, he waits!

Remembering Mama

I began my Blog this past August as a sort of salute to my Mom, who passed away in July of 2014.  It’s been a little over a year since she’s been gone and during this time, I’ve missed her more than I could have imagined.  She was 86, and after a 13 year battle with colon cancer and two days in home hospice, she passed away. Those 13 years were not all terrible; it was only the last six months, the last six weeks, the last six days that were unbearable for her….and for us too….those who loved her…….to see her in such pain. If anything, her passing was a blessing.  I only wish she didn’t have to die for her to be finally free of pain. I miss her!

Of course, I miss my Mom…anyone who loses their Mother misses them, no matter how old they are. But what I miss most, and the reason I started this Blog, was her support of me as a Special Needs Mom. I would like to support Special Needs Moms in her memory and having a Blog with an autism and special needs slant seemed like a way to accomplish it.

My Mama was mother to six children and  I am the oldest. She was a Lady, with a capital *L*, but could strike fear in her children just by the tone of her voice. She adored us but knew we weren’t perfect (except for her grandbabies and her one great-grandbaby, THEY were perfect!) and supported us in what ever endeavor we needed her support with.  Parenting was one of those endeavors. And being a Special Needs Parent, I needed her support more than my siblings with the NT kids.

My Kiddo was her first GrandBaby and she adored him. And he adored her right back, kissing her and hugging her (yep, my Autistic Son kissed and hugged his Grandmother without prompting) as soon as he saw her. In fact, while she lay dying that last evening, he wouldn’t leave her side……he planted himself in her recliner the hospice workers left next to the hospital bed, AND WOULDN’T LEAVE. Eventho we thought he would be more comfortable sitting at the picnic table in the back yard with pizza, we couldn’t get him to move. Now that I think about it, that may be the most profound part of this whole story…..an intellectually challenged person not leaving his dying grandmother’s side because HE LOVED HER. An autistic adult loving someone? How can that be? Maybe we all need to re-think what our kids are capable of, no matter how old.

Why did I start the Blog to honor Mama? Because she was the one person to take my side, my point of view, not judging or telling me what I should or shouldn’t be doing or feeling. That’s what I’m trying to do here with this Blog. What she would tell me was what I needed to do to take care of myself. If we take care of ourselves, we can take care of other people….never forget that,  folks!

Take a nap, she would tell me when it was obvious during a conversation I hadn’t slept for days  because of the Kiddo .  She would ask, when I was complaining about Hubby forgetting my birthday, when was the last time you and Hubby had some time ALONE together?   If I whined about trying to do multiple therapies and not being able to get Kiddo to do any of them, she would tell me to take a breath and figure out which one was most important, then do that one.  When I was beating myself up for not doing enough….for The Kiddo, for The Middle Boy, for The Youngest……she would tell me there are 24 hours a day for everyone and why should I expect more from myself  than others do.  When The Kiddo was about 14 years old, I  complained to Mama about him being difficult to get up in the morning in time for his bus and his being grumpy, and she told me he sounded just like my brothers when they were 14…..Kiddo was being normal and I was thinking *autism* and she was thinking *normal 14 year old boy*……made me feel better right away!  When we had to make tough decisions about The Kiddo, she never told us what to do, she and Daddy *just* supported us, no matter what.

So:

  1.  Take a nap.
  2. Try to get away alone for a bit with your Partner.
  3. Prioritize.
  4. Realize there are only 24 hours a day and you are human.
  5. Sometimes behaviors have nothing to do with Autism; it’s just a kid being a kid.
  6. You made the best decision you could under the circumstances.

Take care of yourselves and I’ll be back soon. I’m going to have a big, gooey chocolate doughnut now. Mama would approve!

Twenty Minutes

It takes me twenty minutes to get ready in the morning.  I really, really, really need those twenty minutes of uninterrupted time to be pleasant.  Also, to function and to feel good about myself and my life.  Hubby and I share a bathroom and if there is the occasional overlap of his getting ready in the morning and mine, he knows enough to STAY OUTTA MY WAY.

Now, those twenty minutes are just the basics of shower–shampoo and conditioner, washing my ol’ bod–then deodorant, lotions and potions guaranteed to make my skin look younger and unwrinkled (I buy that bill of goods….I’m a face cream whore) , combing my hair (which is colored and cut once a month so I don’t HAVE to dry it), and putting on my clothes.  If I clip my toenails or shave my legs, add a couple of minutes.  If I need to put on make-up or dry my hair, add a couple more.  And if I need to be the Knock-Out-Good-Lookin’-Babe I am in my heart, it’s about 30 minutes. Tops.  Before I ever start the shower, I queue everything up, like a surgeon with his/her instruments, so I can “get ‘er done.”   I timed all this years ago….and the story of WHY I did is pretty funny.

My Kiddo had just started his high school program.  It was an excellent program, in fact we moved to this community for the strength of the high school special ed program and the gifted programs for the younger two Kiddos. His inclusion facilitator was a wonderful man. Through his high school program, he had a series of (mostly)wonderful one-on-one aids, para-professionals whom I always liked.  Except for one, the first one he had in his high school program; I couldn’t stand her because she treated me as if I had done something wrong or wasn’t paying enough attention to My Kiddo and His Needs.

Often, I had to prove myself to the para-professionals working with My Kiddo….I wasn’t a horrible, selfish or stupid woman, and even if I have a son who has autism, I wasn’t, umm, *intellectually challenged* like my son. Hubby has a doctorate and I have a graduate degree in Arts EDUCATION and I even worked for a time for the feeder elementary school district but since I have a son who has autism, my intelligence and our family is suspect until proven otherwise. Once they realized I was *good people* we got along and all was well.

It was a lovely October morning, Kiddo was in high school, the younger two were in junior high and I was working three days a week for the elementary school district. The days I was not working, I spent doing housework, perhaps taking a powerwalk around the subdivision or catching up on school related paperwork.  This particular morning, I was home.  I decided to wash the kitchen floor and clean the boys’ bathroom–yuck! Then I took a shower, later than I expected to, right after lunch.

When I got out of the shower, the phone was ringing madly and the answering machine was blinking like crazy.  I answered the phone and it was The Kiddo’s new aide and she was LIVID.  She yelled at me for not answering the phone the first time she called and DEMANDED to know where I had been.  I calmly told her I was in the shower. And then she shouted  at me, “HOW LONG DOES IT TAKE TO TAKE A SHOWER?” I told her I didn’t know how long I had been in the shower (that’s what spurred me to time myself so I could honestly say how long 🙂 )

But the reason for her call was so, SO SILLY I have to repeat it here so you can have a laugh too.  And it certainly was no reason to get all hot and bothered for me not jumping when she called:

The Aide: Why did you send Kiddo to school when he is obviously ill?

Me: He’s ill? What’s wrong?

The Aide: He seems to be in some GI distress, why did you send him to school when he was sick?

Me: He wasn’t in any kind of distress this morning. In fact, he was cheerful and giggling while we waited for the bus. Is he vomiting? Does he have diarrhea?

The Aide: No, he is not vomiting and does not have diarrhea.

Me: Then I don’t understand…….

The Aide: He is gassy.

Me: Gassy?

The Aide: He is flatulent. He is loudly flatulent and it has an odor.

Me: What did he have for lunch?

The Aide: As you know, it states in his IEP he is to order his own lunch in the cafeteria and today he chose Cabbage Soup.

Me: What did he have yesterday?

The Aide: Tacos with Rice and Re-fried Beans.

Me: Well, he had Enchiladas with Rice and Beans for dinner last night.

By this time I was trying not to laugh because it was Surreal.

The Aide: Oh.  Well, then I guess that explains it.  Do you want to pick him up?

Me: No, why would I pick him up?

The Aide: Because he is flatulent.

Me: He isn’t ill, so there is no reason for me to have to pick him up.  Guess y’all will have to live with the repercussions of the Cabbage Soup, won’t you?

After I got off the phone, I called Hubby and replayed the whole conversation….we couldn’t stop laughing! Our Kiddo was farting–loudly and it was smelly–and they wanted me to pick him up.  You could say they contributed to the problem by encouraging him to chose what he wanted for lunch.  And of course, I made Enchiladas for dinner the night before.

I got to thinking about this whole weird situation with that aide’s phone call.  My Mom (the mother of six) always told me we mothers need to take care of ourselves so we are able to take care of our children. Why should I be made to feel guilty for taking a shower?  Why should anyone infer I wasn’t responsive to their phone call because I don’t care about my son? I am on call 24/7 so if, for 20 minutes a day, I am incommunicado, why should it matter to anyone? That’s when I began my shower timing and got into a rhythm so I can cram in lots in those 20 minutes. And it still works.

Since that time, I am clear about my needs for privacy and the ability to take care of myself for twenty minutes a day.  I have tried less and it doesn’t work, not only for my own hygiene, but for my mental health.  And if I am not comfortable, or mentally healthy, it is not good for My Kiddo. And it’s important enough for me to take time so I CAN be there for him!

I’m sure you’re wondering what happened with that aide; she didn’t last the semester and not just because of my Kiddo. She *rubbed* her supervisor the wrong way and was late once a week, every week she worked. Her replacement was one of my favorite’s of Kiddos para-professionals, and was with him for three years.  When her husband was transferred, she cried when she left and so did we!

So don’t feel guilty for taking care of yourself and don’t let anyone else make you feel guilty for taking care of yourself.  You need to be strong for your own kiddos and you can’t be if you haven’t addressed your own needs…at least, occasionally.

 

 

 

 

 

It’s About Who?

I remember being stunned the first time I was told, “It’s not about you and your feelings. It’s about your child.”  Eldest Son was almost two, not talking and the consensus  opinion–from the In-Laws–was he was having ear infections I was not having treated.  He had “fluid in his ears” and I couldn’t be bothered to take him to the doctor, so the story goes, and I was selfish and neglectful….blah, blah, blah.

Before the character assassinations began, if they had asked me if I thought he was having trouble hearing I would have told him no, he hears stupendously. Why would I say that?  Every time I opened  a bottle of my favorite soft drink in the kitchen, he would come running from the next room because he heard the carbonated hiss of the bottle opening.  If I opened a box of cookies or a bag of candy, he would suddenly appear.  Lest you think we were eating primarily sweets and soda as our diet, I would tell you it was only on special occasions and rarely for him.  But he was a charmer even then and he would bat his big brown eyes at me and flirt relentlessly until I gave him a sip or a piece of candy. If I did so, he would take what he wanted, smile at me and leave.

He was also what we called a “commercial detector” and would run into the TV room if he heard one of his favorite commercials (anything with a catchy jingle at that point) to see and hear it.  He’d step in front of the TV screen, watch it and go back to his toys when it was finished.

Bowing to the In-Laws wishes, we took him to have his ears checked and lo and behold, not only did he NOT have an ear infection but his ears were the most perfect ear drums of a two year old the doctor had ever seen! We also took him for a specialized hearing test at a local university. The results were inconclusive because he wouldn’t cooperate. The examiner knew he could hear just from observing him but since he wouldn’t cooperate, there was some concern. And so,  our Autism Journey began.

Of course, it wasn’t about me, it was only everyone’s concern with his development. But what WAS about me was the easy jumping to conclusions that somehow it was MY FAULT he wasn’t talking and how that made me feel.  I was a nervous first time Mom and any variation of his bowel movements or a head cold sent me to the phone and my pediatrician.  I still do not understand how it could be perceived I would not call that pediatrician if I thought he couldn’t hear.

And so it went, any time a family member had a *brain storm* as to why he wasn’t talking, I was automatically assigned the blame.  Could he be malnourished? Me, of course, not feeding him properly! He had quirky diet issues common among many kids with autism. Since we were two years away from that official diagnosis, how would I know?

My self-esteem as a parent took a heavy toll.  I stopped calling family because I didn’t want to get the third-degree as to his not talking and what we were doing about it.  Considering it was me making appointments, taking him to early interventions and all sorts of therapy, I needed all the strength and self-esteem I could muster. And listening to someone tell me I was a horrible, neglectful mother didn’t do anything to help…..me or my son. If it was truly about HIM, then why berate the one person who was trying to get him help?