A Chance to Help?

Every Monday is gym day.  I’ve had a couple of gym stories but this one is different.  It is not about my son.  It is about moms.  Moms who recognize and seek out someone else without really seeking out someone else.  It can’t be the first time this has happened. I would love to hear if any of you have had a similar experience.

I showed up for class with my son and his tutor.  They went straight into the gym and I sat down to write a post.  That did not happen.  A mom I had seen for the past few weeks came and sat down near me.  This woman had two boys in the class, one nearly 4 and the other, 5 1/2.  The only thing I noticed about them, prior to this day, was that the younger one kept making excuses to come out to talk to his mom.  Beyond that, I thought they were just a couple of NT brothers.

As we sat, she started to make small talk with me.  I’m not sure if she had me in her sites that day or if it was spontaneous.  At any rate, she was very pleasant and correctly pointed out my son and asked if he was mine.  I confirmed it.  She then said that her oldest son had joined the gym because he had some gross motor skills problems and her school had suggested that this gym might help him.  She asked if the gym had helped my son.

So, what to do?  Small class.  Answer politely and ignore her?  Other parents seated apart but not far enough to prevent them from hearing every word.  Do I tell her or not?  If you know me, you know what I did.  I told her.  In front of the room of observers.  Including the father of my arch nemesis, the mom that brought the illness and blight on me in February by coming to the gym sick.  And all of them heard, but no one turned.  No one raised an eyebrow.  No one batted an eye.  That I noticed.

I was having a conversation with a woman who seemed to be looking for help.  I told her yes, the class has been helpful to my son because he, also, has motor skills problems.  He has autism.  She nodded, completely unfazed, seemingly knowing.   She was neither looking at me pitifully, nor as though I had the plague.  She looked at me very simply like one mom to another.

“My son stutters,”  she responded.  “He spoke fine until he was three, and then he began stuttering,”  she continued.  She did not care about anyone else in the room.  She divulged that her son had no formal diagnosis.  Her pediatrician told her that he would outgrow the stutter by the time he was five.  She said he was now 5 1/2 and was showing no signs of stopping the stutter.  He also hates his PE class.  “PE in kindergarten?”  I asked.  She said yes, that it was a private school but her son was completely non-athletic and was just starting to show an improvement after joining this gym class.

She then openly shared that her middle son was a bit of an enigma.  He has speech delays. He had normal cognitive function by one assessment and impaired cognitive function in another.  She shared that her middle son knew dinosaur names, shapes, and his alphabet but had trouble with his colors and numbers.  He had special services at their home until he reached the age of three when they were discontinued.

Because of the private school, her boys get no public school funding for special needs.  They have no IEP.  She did not know what an IEP was until I said the words to her that day.  She has been relying on her insurance to cover her costs.  Initially, she received assessments by the county agency for special needs but the assessments all came back negative for qualifying disabilities.  She had no idea what to do for her boys.

Her younger son interrupted by emerging from the class, again.  I listened to him speak to her.  In my very brief observation, he spoke a garbled sentence and started laughing looking another direction.  I did not see anything funny.  No one else was laughing.  Hmmm.  She promised a Jamba Juice if he would finish the class with his brother.  The boy returned inside.

I shared with her some of my son’s signs of autism.  I explained to her the occupational therapy, speech and ABA and how they were funded by the public school district and the state agency. I wanted to share more with her but the setting was not conducive to a special needs chat.

She was genuinely interested.  I think she was wondering if her middle son was on the spectrum.  She commented that the spectrum was “too wide”.  That she knew April was Autism Awareness Month.  She watched the McNeil Autism special.  She commented that she felt autism was “too broad” a term, and it should be divided and renamed separately in categories by level of disability. What I saw was a woman who knew where to look but was afraid of what she might find there.  She thanked me for the name of our speech therapist and repeated the name to get it right.

The children were finished.  They all ran out of class.  Her two boys had been promised a Jamba Juice for participating in the class to the end.  My son came running out with his tutor.  A sea of children parted us.  I helped my son to get ready to leave.  She left with her children.

I feel now, looking back on it, that this woman is worried about both her boys.  Was this a simple small talk inquiry or something more?  I think it was both.  I think she may be scared that someone might use autism and her son in the same sentence.  I have no qualifications to tell her what is going on.  I think she is looking for some answers.   I don’t want to speak out of turn.

Am I reading this exchange wrong?  Or was this woman looking for help from me?  She did not ask.  You see the exchange.  What should I have done differently?  What would you do?  Do you have any suggestions for what I should say when I see her next Monday?

Because this is real life help we’re talking about here.

What should I do?

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About solodialogue

I'm a lawyer and the mom of a 6 year old boy with autism. I work part time and spend the rest driving here and there and everywhere for my son's various therapies. Instead of trying cases, I now play Pac-man and watch SpongeBob. I wear old sweaters and jeans and always, always flat shoes to run after my son. Yeah, it's different but I wouldn't change it for anything. The love of my child is the most powerful, beautiful and rewarding aspect of my life.
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32 Responses to A Chance to Help?

  1. That’s a tough one. I think she definitely planned that conversation with you, that it wasn’t just spontaneous. The information you gave her is really good. I guess I would maybe leave it at that for now, (since she’s going to have to be the one to make the next move) but definitely make yourself available to talk next week.

  2. C... says:

    I don’t think you did anything wrong. I think you were open about your situation without really telling her what to do. I think sometimes even when people ask for advice they don’t want to be told what to do but what you did to get help. It’s like she is earmarking this conversation to compare to others she’s had. I see that a lot with people who have asked me questions about my son. It’s like they want to see if another parent of a special needs kid will offer up the same consistent response. In my opinion, it’s a way to get an informal diagnosis but I really think she should take the next steps to get a true professional diagnosis. Maybe you can tell her about where you got your child diagnosed or how and see where she takes that bit of information with her kids.

    • solodialogue says:

      I love that analogy that she is earmarking this conversation for comparison. I did mention UC Davis Mind Institute which is a very well known place for diagnoses. She knew it already but I almost felt she thought it was unreachable… Probably more like she was too scared to reach out to it.

  3. Teresa says:

    Over the years I have had a lot of similar conversations with people. Mom’s whose intuition tells them that something is not right with their children but whose doctors tell them: “He’s a boy. He’ll outgrow it.” “He’s just picky. Give him more opportunities.” “His siblings are talking for him. He’ll talk when he’s ready.”

    In my mind, I long ago decided that I couldn’t “tell” someone what to do. Maybe, if I had found the magical cure I would feel different. But I haven’t and my son still has issues. Still there are parents seeking answers who are looking for advice or at least where to look and I can help them. When we were homeschooling I would talk to a lot of parents who were upset because their child (or teacher) did this or that at school and they wanted options. I would present the option that worked for our family–homeschooling–by talking about how it works in our state, curriculum and socialization options. I also would talk about the upsides to homeschooling (getting to spend more time with the children and having a great involvement in their lives or a hyperactive child might learn better by teaching in short increments which the teacher in the classroom can’t provide) and downsides (lots of patience needed and sometimes there is a battle of wills)… If people were interested I’d offer to email them some links with more information. I would always end with the caveat that this was something that worked for us but not all parents were comfortable homeschooling.

    The woman you talked to expressed a concern that I have heard before, that is, the autism spectrum is too big… I surely don’t have the answer and I also am in agreement. A mom of a child who can run, talk and write his name but has issues behaving appropriately in a group setting really does not want to have the “autism” word attached to her son–especially if she has seen a child (take mine, for example, who does not talk, is repetitive, and needs a lot of prompting in a social setting). I don’t blame them. Their child is miles apart from mine. Yet, there are many similar treatments and the more the mom is exposed to them the better the chances of success for her child.

    In reading about your conversation with the other mom it does sound like she sees her children just aren’t fitting the mold. In Arizona parents who send their children to charter or private schools are able to take a child who might have special needs to their neighborhood school for evaluation. The schools must provide appropriate therapy (speech, physical, etc.) even though the child does not attend. (In AZ, they do not have to provide transportation for the therapy to non-students.) Each state is different. In Arizona, they have been battling whether cognitive problems are covered under health care. If your state requires insurance to cover approved therapy programs (like ABA) you could recommend she start there. A visit to a DAN (Defeat Autism Now) doctor may also answer a lot of questions. My advice to parents who are looking for help is to give options, websites but most importantly, hope. They need to know they are not alone with their worries.

    Sorry to have rambled so long…

    • solodialogue says:

      Don’t be sorry at all Teresa! I welcome your input and your perspective is so enlightening always! Your words almost make me feel like carrying a couple little printouts of autism resources in the community so that if I do, by chance, run into someone like this again, I can pass written resources to them right away. This seems like a kind and gentle way to give more than I could give in that setting. Very valuable words of wisdom. Thank you.

      • Teresa says:

        Thanks Karen,
        You reminded me of a friend who used to carry around a card with info on autism. Mostly, it was to give people who might be around when her child would have a meltdown. It was a “What is autism?” note with a website. It could easily have a “Do you know a child who might have ASD?” with a link or two.
        One time I wrote a bit for our church newsletter about being a special needs child. While most people in our church were understanding and amazingly kind there were those who would make remarks. The write up was very well received and I think, enlightening to many (for example, they didn’t know Matthew had an internal clock that let him know time was up…) The more information we can share the more people are willing to be part of the solution instead of just standing on the sidelines.

  4. Julie says:

    I don’t know if she planned it or not but it sounds totally intentional. She’s at that point that I think most of us with special needs kids have been. Our Mommy-Sense (similar to spidey sense only better) is absolutely screaming at us and we are warming up to the idea that it may not be “he’s just a boy, she’s a late bloomer”, that our regular pediatricians keep telling us. We know we need to help our child but don’t know how and the only way to figure that out is to seek out someone who is going through it. You did nothing wrong. On the contrary – you educated her. With education comes power. When she gets her feet under her, she’ll be able to get her boys help – whatever that help may be.

    You are good person.

    • solodialogue says:

      Julie, you make me laugh at that last sentence! I try to be a good person but I depend on all of you who are so kind to stop in here and give me guidance. It’s funny isn’t it how each mom comes differently to wrap her mind around the diagnosis, the label and the meaning of it to the lives of our children. This woman was very kind but clearly scared. I think you are right that she has to feel the power she will derive through knowledge before she takes the steps to get the boys the help they need. The older may need nothing more than speech therapy for the stutter but the younger one definitely has some challenges ahead.

  5. Rachel says:

    I think you did a great job. The other mom, whether intuitively or intentionally, was looking for support and information. She clearly does not have the right support for her children, and she is also clearly terrified of the word “autism.” She saw in you someone who was handling your own family’s situation with a lot of strength, and who is not afraid of the word. She sounds very lonely and scared, and she decided to trust you with some of her family’s story. That’s really a great compliment about who you are and how you parent your child.

    When people say that the autism spectrum is too “wide,” what they’re often saying is that they want their higher functioning children to escape the stigma of autism. I can certainly understand the feeling — after all, what parent wants his or her child to deal with stigma? — but I don’t see that it ultimately helps the kids. In the case of this women, it may be keeping the kids from getting services. What helps the kids, in the long run, is to do just what you did — to talk about your son’s autism openly and honestly, and without shame. Why should you not? You have a beautiful, sensitive kid that any parent would be lucky to have. There should not be any stigma attached to autism; it’s just a condition, like any other. Trying to evade it while leaving more severely disabled people to carry the stigma seems entirely wrong to me. Better to erase the stigma altogether.

    There are clearly different needs in play across the spectrum, but I wish people would concentrate on the differing needs rather than the terminology. Even within categories of similar functioning, the needs are all over the map.

    • solodialogue says:

      You are very kind to me, Rachel. I do feel this woman was scared. She may be lonely as well. Between your comment and Teresa’s it has solidified my desire to carry a card inside my purse with resources for anyone who has questions.

      I believe you are, quite frankly, way ahead of your time. Your words about the “stigma of autism” really make me think. Is it “shame” I feel when I hesitate to share the diagnosis in a room of strangers or is it the belief that those around me fail to understand what the diagnosis means and will make judgments about my child that are incorrect? I agree so strongly with you that the stigma should be erased, and who better than those of us who have the chance to share what it means to erase that stigma? I think we can. I just wonder if we will.

  6. Jessica says:

    I think it was a perfect response. Not too heavy handed, very informational, offered support, I’d say an A+ all around. So many people are hesitant and it’s so hard for me to understand it. I’m on the opposite end where if someone tells me there’s an explanation I’m jumping up and down. She’s curious, you gave her good information, ultimately it’s up to her to gather the info and make a decision. She’s taking baby steps. Hopefully you’ve helped her.

    • solodialogue says:

      Ooh, I love when I get an A+ 😉 That doesn’t happen much anymore! You are a highly educated go-getter, which can be said of most of us who share our journeys in this forum. There are those who are still just testing the water. They have a way to go. I just want to help her jump in. 🙂

  7. I had a similar situation about six months before I started blogging. I did the same as you, handed out phone numbers, talked about my kid and how the diagnosis had helped me to understand her better, and help her with the things she struggles with. I deliberately avoided discussing his child, who wasn’t yet speaking or gesturing, and had a whopping 40 minute meltdown in front of me. The husband was ready for answers, but I don’t think the mother was there yet.
    At least they had the phone numbers should they want to investigate further. Sometimes that is all you can do. If she wants to talk more, she knows where to find you. 🙂

    • solodialogue says:

      It’s a strange sort of feeling. You want to help but the parent who is actually looking to you for guidance is not ready to receive the help. At the same time, at least my own instincts were to take that parent to the door of the nearest diagnostic center! I guess it kind of boils down to the old saying, “You can lead a horse to water but you can’t make him drink!” 🙂

  8. Lizbeth says:

    You did exactly what I would have done…given her the information that she was asking about and telling her a little about yourself and your son. As the other ladies have so eloquently stated, she will come to you if she feels the need warrants. At minimum you have exposed her to a little bit of your life so she can in, her own way, apply it to her own.

    You did wonderfully Karen. Intetionally or not, she was lucky to have come to you.

    • solodialogue says:

      Thanks, Lizbeth! I guess the bit I was left feeling undone about was not handing something to her that she could keep as a reference point. Something that could give her a push. I will do that from now on. It might just come in handy someday.

  9. Tam says:

    I suck at reading people, but from this account it seems to me she was desperate to find someone that she felt she could talk with about her sons’ issues, that wouldn’t be quick to dismiss her concerns or worse. She probably had observed you interacting with your son in the past and decided you were someone that might fill that need. Your response seems completely appropriate to me. Perhaps this will develop into a friendship, perhaps she was just hoping you might be able to point her in the right direction for resources. Either way it seems to have been a positive interaction.

    • solodialogue says:

      It seems to have been. In a way, I was kind of feeling like I was not so good at reading her also but the more I think back on our exchange, the more I can see the fear that was in her eyes. She smiled but her eyes were wide in that way that can express a fear. The void I felt was not doing enough. But then, we all know that sometimes, I say too much!! Lol!

  10. Melissa says:

    I think the conversation was probably pre-meditated in some way, shape or form… I think you did the right thing. I think, as parents and especially as special needs parents, we all have those sorts of worries and concerns. And it helps to have a sounding board for those concerns. Even if it’s another mom at a gym class.

    I think if this were somebody you knew intimately, you probably wouldn’t be any more comfortable… it might even be harder. But you’d do it. I’ve done it. But, I think it’s ok to ask how she’s doing when you see her. How things are going? And let her take it from there. If she’s going to talk about it, she’ll talk about it. I think it’s likely that she will, as she sought YOU out. It may not be next week, though.

    • solodialogue says:

      Hmm, interesting. If it was someone I already knew would it be easier or harder to share? Well, I think that would depend upon whether that person already knew my son was ASD. Most people do because it is not a big secret for me (there are still some who don’t know). If I have not already told them of the diagnosis though, for some reason, I can imagine that it might be more difficult. I will ask how she is doing and let her take the lead. The consensus seems to be to let her take the lead with the conversation. Thank you Melissa. 🙂

      • Melissa says:

        I wasn’t so much saying that it’s harder to share. Most people I know already know that my daughter has ASD as well (whether they accept that or not is entirely a different, and completely frustrating story). I actually meant that if you had a good friend or family member and their child was not meeting milestones or they were coming to you with concerns, it wouldn’t be any easier than this. I’m sorry that I wasn’t more clear. My only defense is that’s been a tough week. I’m a bit foggy.

      • Melissa says:

        And a little backstory… a good friend of mine (like known since high school)… who obviously knows us, our daughter… has a child about a year younger. It wasn’t out of the ordinary for us to be talking regularly. She started coming to me with concerns. Her mother and pediatrician and husband were waving them off. I looked after the child a couple of times … and saw my daughter. What would you do then?

      • solodialogue says:

        No doubt that I would open my big mouth to help! As long as I thought she would be ok with it and usually if people know me, I think they would expect that of me! A friend I’d known that long would deserve that – of course I always say it is just the mom in me but then I’d have that list of resources available. 🙂

  11. Broot says:

    I think you were spot on. Next gym class, I would say hi warmly, but let her lead the conversation – if she keeps it light and chatty, you do too. If she brings it up again, do like you did today. Non-judgemental, informational, light. 🙂 Ka pai, Karen! *hug*

  12. Michele says:

    she sounds like she is genuinely asking from a place of concern re her boys not chit chat

    Perhaps you could put it to her along hte lines of what you posted here – not in as much detail but “Hey Mary you know how we spoke about our boys last week? I thought about our conversation driving home and I am not sure if you wanted to know more about x’s autism and what we have found helped

    OR

    I got the impression you were concerned about your boys a little too and maybe had more qs for me

    OR

    wanted to know more about ASD

    is that right? Or am I way off track?

    Or something to that effect

  13. Melody@ LTS says:

    Oh my goodness, you are in a wonderfully tenuous position to support a woman who is obviously reaching out. She seems worried for sure and rightfully so. I would offer my friendship with a phone number exchange (if you are both comfortable with that) and set up a time to meet for the boys to “play”. In that, the two of you can talk about the various concerns and your could offer her a list of resources that you’ve found helpful. If she’d never heard of an IEP before, it is likely that she is unaware of the fact that even though her boys are in a private school, the home school district is still required to provide special education services. I would give her links to websites like SPD, Autism Spectrum Disorders, Wrightslaw, etc. as well as community resources. If she is in your district, and you both feel comfortable, maybe you could help her find the connection within the district to get the ball rolling.

    Just a few thoughts… Best of luck to you both!

  14. eof737 says:

    Of course she was looking for insights, feedback, help… As moms, we always reach out to others who we think might have an inkling into what we suspect already. You did a great thing by being honest and sharing openly. You did not hold back or act sad or ashamed and that is key. I applaud you. 🙂

  15. jnettlee says:

    I think you did exactly right and you were tuned in. You read between the lines.

    I would simply allow her to talk… and keep listening. Allow HER to get to the place where she NEEDS answers. It will come… in time. Just LISTEN and keep the communication lines open. Just BE there for here without offering opinions. Just BE there. She will gain your trust, and the day will come when she will ask.

    It’s tough, but you’re doing exactly right, IMO.

  16. Jen says:

    I would definitely help her out, she sounds unsure about her children. At least give her some info about where to go for another evaluation. Better to know early on, right? It really can’t hurt the boys. I’m sure she’d appreciate your help.

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