4 Things This Special Needs Parent Really Doesn't Mind if You Say

One of my favorite FB posts says something to the effect of “The parents of special needs children are often more unpredictable than their kids; be careful with your words."  Amen!  Everything that can be said with hit each one of us differently.  This makes it really tough for the rest of the world to know what to say to us. No matter what gets said there is somebody who is going to be offended and somebody who will love you for saying it.   This really hit home for me recently when I read an article in the Washington Post  entitled 4 Things Parents of Kids with Special Needs Wish You Wouldn’t Say. There are several of these types of articles in various publications and the cyberworld.  (Just Google 'things not to say to a special needs parent' and you’ll see many come up.)  I almost always read them and almost every time I think “I really only agree with 50% of what is written here," but I guess if other special needs parents didn’t feel that way the article wouldn’t have gone viral.  I’m not writing this to put down the person who wrote the Washington Post piece.  Her feelings are as valid as anyone else’s feelings. I want to point out that she is only one special needs parent and so am I. I really don’t mind if anyone says one of these things to me.  

So here is my take on people’s common responses to news of an autism diagnosis.

“I’m sorry.” Okay, I admit this phrase has made me bristle a little and I have been tempted to respond with “Why, what did you do?”  But when I think about it from another person’s perspective, what are they supposed to say? “Oh that’s great! ? An autism Diagnosis is what every parent dreams of.”  They are not saying “I’m sorry that your child is so horrible.”  They are saying  “I’m sorry that things are likely to be more difficult for her and your family.”  Quite frankly, that’s true.  I was also sorry to hear about her autism diagnosis, but that never meant I didn’t love the qualities that my daughter has.   Hopefully, the same is true for those around her.

Lately, I hear a lot of people respond  to the autism diagnosis with “That’s okay,” and I think, ‘I know it’s okay, I’m just explaining why she is stimming on the zipper of your purse so you don’t think she is going to lift your wallet. ' But again, I have to ask myself, ‘what do you want people to say?’ They don’t know each person’s perspective on autism and there really is no perfect response for everyone.   “That’s okay” seems pretty reasonable under the circumstances.

“Wow, you’d never know it to look at her!”   In her earlier years, I heard this fairly often, and I just acknowledge that it was true – you wouldn’t know.  If they knew her better, they would know, but they didn’t live with her and by looking they weren’t able to guess.  Quite honestly, I miss hearing that, because I don’t hear it anymore.  I hear  “Yes, I know.  I could tell.”  So for those of you that are annoyed by “you’d never know to look at her.”   Would you really rather hear “Yes, I know.  I could tell’?

“All kids do that/struggle with that.”  Okay, this one makes me want to roll my eyes.    Of course, this is just a matter of a lack of understanding, but maybe we should see it as a teachable moment.  If we respond with, “I know many kids have some difficulties, but when autism is in the mix the struggle is longer and more intense,”  that may help people understand.  They still may not really get it, but we have to teach with baby steps.

“I don’t know how you do it.”  The other day I was talking to my neighbor.  She works different shifts, around the clock that change every 6 weeks.  Without thinking I said “I don’t know how you do it.”  Of course, I know how she does it.  She recruits family members and neighbors to help with her son; she often sleeps during the day with the help of melatonin or medication and she trudges forward aware that her job pays well and she needs the money.   So I know how she does it.  I guess I was just saying that I respect the hard work and I admire her stamina.  That’s probably all that people are saying to us “ I respect the hard work and I admire your stamina.” They are just looking for an informal tone that means the same thing.  Quite honestly, I appreciate that.  I want people to recognize that this is hard and it takes a hell of a lot of work.   Many people say “Any parent would do the same thing,” but I don’t think this is true.   Often a parent walks away when the going gets tough and its okay to recognize those that  make sacrifices and are committed to their kids.

We all have different things we don’t want to hear and things that make us feel good.  To be honest, I could write a long list of things that people say regarding autism that totally piss me off and half the time they are either said by other special needs parents or people with autism themselves.  Does that mean people shouldn't say those things?  No!  That just means I’m human and a lot of things bug me.  Maybe, special needs parents need to recognize that they don’t speak for everyone that identifies him/her self as a special needs parent.   There isn’t ‘special needs parents thinking’ any more than there is ‘blacks thinking’ or “American thinking” or ‘autistic thinking’.   We’re all individuals with our own perspective. That's why there is outrage when anyone makes a blanket statement whether it's Autism Speaks or Jenny McCarthy or Ari Ne'eman.   If each and every one of us made lists about what people shouldn’t say, there may not be anything left to talk about.  People won’t talk to us about our children at all, for fear of saying the wrong thing.  Maybe we should cut people a little slack and just thank those that want to learn more and be part of our children’s lives.  None of us has the perfect thing to say 100% of the time.

To Tops Soccer and It’s Coaches

Many of us wonder why make a soccer league for special needs kids.  The kids like to kick the ball, but they can do that on their own, right?  Many of the kids don’t understand the basics.  They don’t even get why you guard the net, which way the ball should be going, what Team A vs. Team B really means, nor concepts of defense, forward, goalie…. What’s the point if they just don’t get it?   I admit that I thought of giving up on the idea for Naomi. We just weren't getting anywhere.

But when I tell her she can play soccer on a team, she lights up!  For most people, being on a soccer team, means the skill and strategy of playing the game, the joy of victory and the agony of defeat.  Some special needs kids think of it the same way.  But many of these kids, including Naomi, have a different perspective.   Many of them for years have stood on the sidelines, watching others and have always being excluded… They never wore the uniform that made them part of a team.  Now that uniform makes them feel like they belong to a group, no longer excluded.
When these kids watched from the sidelines they wanted to join in but were never invited.  They were most likely told to ‘stay off the field’.   Now they have the chance they’ve been denied.  They can get out on the field in their colorful uniforms and just go with the flow- even when that flow looks pretty disjointed.   For them, scoring a goal or winning a game isn’t the point. They get to be a part of something bigger than themselves.  It may not look like much from the sidelines, but we should never underestimate what that means to them.  There are many special needs kids that score goals and think about points and winning games, and this league suits them too.  They get to get in the super stars, and who doesn’t love that opportunity!
 Every week I watch my daughter stand in the middle of the field and play with her hair without too much awareness of how a soccer game is played.  But every week I ask her “Do you want to go to soccer?” And every week she says “Soccer!” which is her way of saying ‘yes.’  So amidst the long and frequent water fountain breaks and wondering around different parts of the field I know she is welcome.  I know her coach will never come to me and complain that she isn’t following instructions with the indirect intention of suggesting that we quit.  Finally, I know she wants to be there, and that’s good enough for me. 
So thanks, Tops Soccer!  You mean so much to so many!

Getting Past the Pyroles

We’ve been to several DAN! Doctors and I always swear that I’ll commit myself  100% to what they tell me.  And I really do try.  We’ve done the Gluten-free casein- free diet, the specific carbohydrate diet, the eat liquids and solid at alternating intervals timed according to your circadian rhythm diet (yes, I’m serious)   I hold Naomi down while we’re getting another round of the same blood tests and she is screaming “Bye-Bye Bloooooood!” with a bloodcurdling panic that leaves me guilt ridden several hours later.  I buy the 100 pack of self-adhesive urine catchers and when I am finally successful getting a sample,  I transfer it to a test vial in the dark.  I’ve tried every possible way of hiding every supplement in her food.   A substantial number of nutrients have been poured down the sink or thrown away after they have sat for several hours in a drink or a smoothie or a meal.  I’ve tried putting the nutrients in syringe and forcing them into her but I don’t know how it can be successfully done without risking serious injury to one of us. We have driven Naomi on 4 hour round trips, every weekend to take her to a swallowing therapist.  When I first called the therapist, she told me that she has been able to get every child she worked with to swallow supplements after 10-12 sessions.  Now she says “every child except for 1 little girl.”  We’re on session 18.  We make the trip.  Progress has been slow but it is happening and we’re not giving up.

With all this work, it doesn’t seem that we’ve really gotten anywhere.   Of course, the swallowing barrier has held us back, but apart from that, we keep feeling like it’s groundhog day.  The same standard blood tests and urine tests are done again and again.  We take the time off school or work, travel to see the doctor, fork out a significant amount of money and we’re back to step one again.   It’s the pyroles,” we’re consistently told.  Now, this wouldn’t be such an unsatisfactory conclusion if at least one of the 5 tests we’ve had done for pyroles came back positive.  But they never have.  The results keep coming back negative.  “It’s a false negative,”  the doctors always say.   I haven’t yet figured out a way to ask “Then why keep doing the test, if no matter what the results are you respond as if they are positive?”  Doctors’ egos can be delicate and I doubt there is an answer to this that would satisfy me, so I haven’t asked it yet.

I have asked “How do you know?” The answer is a standard “It’s indicated in her behavior.”

 I’ve done the standard Google research on pyroles or Pyroluria as it is often referred to, and yes, some of the mood and behavior characteristics match Naomi.  Other characteristics associated with Pyroluria don’t match her at all.  I am aware that not all symptoms necessarily match with the textbook description, but with 5 negative tests it hardly seems like a slam dunk.   Is every case of mood swings, sensory processing issues,  outbursts, poor memory and sleep disturbance due to pyroles?  Couldn’t there be something else to look for?

The supplement for Pyroles  is B6 and zinc in relatively high doses

Now if you have never tasted vitamin B6, I’ll save you the trouble and explain that it’s pretty nasty.  Not bitter, maybe not as bad as wormwood, but it’s a sharp strong, sour taste.  It’s a little like taking straight unsweetened lemon juice in a powdered from only stronger and less pleasant.  Try hiding that in any food or convincing a kid who can’t swallow capsules to willingly take it! (Yes, I’ve tried adding sugar or honey and adding it to lemonade.  No success!)     Zinc is slightly better, but it has a metallic taste and it’s pretty hard to hide in large doses too.

I’ve explained all this to the DAN! Doctors and they say “Yes, I know it’s hard.”  You can imagine how helpful I find that.

The last doctor I saw gave me a prescription for P5P transdermal cream, the biologically active form of B6, and it made her go completely nuts.  All of the negative characteristics associated with Pyroles went full force when I gave Naomi P5P.  I know that things may get worse before they get better, but this was out of control.  We couldn’t live this way. “Give her as much as you can,” the doctor would say.  No amount was small enough.

So, since the standard testing indicates that everything is more or less within the limits of normal, I just want to get past the pyroles and move on to something that kind of stands out.  I’m wondering if we can test for parasites, lyme disease, neurotransmitters, hormones, west Nile virus, anti-brain antibodies or mitochondrial dysfunction.  It’s really hard for me to put the time, money and energy behind this when there’s really no objective testing that says BINGO!  Yes, I realize that there is almost never a single thing that answers all the autism questions.  I know that.  I’m just looking for something particularly significant.  Nothing so far has indicated particular significance; all the efforts we have made haven’t really shown us results.

After our last appointment that resulted in a retesting of everything we’ve already done and another pronouncement of pyroles,  I decided to call the doctor’s office.  “I just spent almost $400, a lot of travel time and a very difficult day with my kid on an appointment where we didn’t find or test for anything new.  I really don’t want that to happen again.  When I come in next time can we at least do some new testing?”

“It depends on her progress.  We’ll take her height and weight and you can talk to the doctor.  At that time he’ll assess if new testing is necessary or some should be repeated.”

Naomi’s height and weight have never been a point of concern. “Talking to the doctor,” was what I had already done at the last appointment.  I get it.  Pay first.  Ask questions later.  It sounds like we won’t be getting past the pyroles any time soon!