"Why" Questions, With No Answers

I read somewhere that a mother of a five or six year old child answers around 300 questions a day. Multiply that by the number of days in a year and the number of children around. Sometimes moms get tired of answering questions. Sometimes a mom might even tune some of those little voices right out and stop answering some of those questions. I’ve done it.

The where, how, what, and particularly the why questions can get tiring. And it is especially trying for a mom when a child questions her instructions with “why.” I have been known on occasion to use the old “Because I said so” standby that my own mother sometimes used.

My youngest two are eleven and thirteen so I should be done with the constant questions, but I am not. Because of Sydney’s developmental delay it seems we are stuck there, never able to move on to the next stage. I’m almost certain Sydney is still asking me 300 questions a day, much as a five or six year old would. Sometimes I feel like I am living a life like Bill Murray lived in the movie Groundhog Day. It gets so repetitive. Sometimes, I find myself tuning her out and even asking her to stop asking questions for a few minutes so I can concentrate on the task at hand.

Although Tate also has a developmental delay, his is a different story. Due to autism Tate rarely asked me the why or how questions, or much of anything else when he was younger. And when he did, it was something I celebrated by letting everyone close to us know that it had happened. But lately, Tate has surprised me several times, almost grilling me, about a subject. His why questions are coming more often but they are not usually the typical why questions a younger typically developing child would ask. Tate often wants to know the answers to questions that many of us would not ask.

Yesterday Tate asked me where his older sister was. I explained she was on a road trip, travelling to visit friends. So he pressed me for details, wondering exactly where she was. I was taken aback just a little but was happy to answer. I told Tate what state his sister is in right now. He then said, “How come she wanted to visit friends?” and after that one, “When will she be home?” Because Tate very seldom is interested enough to ask questions about these kinds of things, it was surprising to me. And as often happens, when Tate does something he did not do “on time” it is a giant reminder to me of all the things he SHOULD have done. And it reminds me just how far behind he really is, on more than one level. He truly did not understand why his sister would drive hours to see friends. He would not inconvenience himself like that to see someone. Knowing he could not comprehend the WHY behind my daughter’s trip made me sad. But I still celebrated his interest and the fact that he had asked.

Because of Tate’s lack of social skills, sometimes he loudly questions things the rest of us would not because it would be considered rude. For example, when we have visitors in Bible class (Sunday school), he demands to know WHY they have come. No matter how many times I remind him we want visitors to feel welcome and invite them back, he treats them as if they are intruders who need interrogating. I know his questions have a lot to do with the change in his routine. A visitor causes him a little unease. But, I have found myself wanting to ask Tate, “Seriously? Now? Now is the time you decide to ask questions? You did not ask them at all the appropriate times, but you can come up with this many questions when the time is not right?”

Alas, it would do no good to ask him because Tate answers questions with less reliability than he asks them. His receptive language is so much better than his expressive language so he cannot explain the motives he has behind much of anything. He cannot usually tell me why he does anything he does, nor can he put into words how he feels about things. When Tate uses the word “because” in a sentence it seldom really fits. He might explain to me why he paces when he is anxious by telling me, “Because that is what teenaged boys do.” If I ask him why he does not like the braces on his teeth he will tell me something like, “It is illegal to put braces on thirteen year old boys.” I think I know the answers to those questions and I suspect he also knows the answers to those questions but he cannot communicate those things to me with words.  

And just as I was typing up the end of my thoughts on this subject, my husband came from Tate’s room chuckling. He had just asked Tate to speak to his grandparents on the phone. Tate, totally baffled as to the reason his dad was interrupting his movie viewing to speak on the phone, asked, “Why?” Reasons like, “Because they’d like to hear from you.” or  “Because they love you.” do not really solve the mystery for Tate. So the first thing Tate said in the short phone conversation he had with his grandparents was of course, “Why’d you call here?”

You might also enjoy this post: Lost in the Translation or this one: Speaking Tate's Language

Why I Wore Blue Today

What did the color blue ever do for me? Actually, my family would laugh at this because blue is my favorite color. I wear mostly blue and decorate almost exclusively in blue. Once, my older sister had an intervention of sorts for me.  I asked her opinion on the counter top I was looking at when remodeling my kitchen. I was leaning toward blue. She looked around and said, “No more blue! Your carpet is blue. Your walls are blue. Choose a different color for your counter top.” Ha! I chose a light green with a splash of blue in it.

Why do mothers of children with autism ask their friends and family to wear blue one day a year? It has nothing to do with the color itself. What can the color blue do for us? The answer is fairly simple for me. The color blue cannot perform some kind of therapy for our children. It cannot help with their social skills, their communication skills, or their motor skills. It cannot calm them, lessen their quirkiness, or ease their anxieties. By wearing the color blue on World Autism Awareness Day, you let me know you care. You let me know you are “aware” of our walk. My family does not want your pity or your condolences. We would like your empathy though. We would like to know that you know that we are struggling and that you understand just a little bit. THAT is what the color blue did for me today. When I knew that Tate’s school had made an announcement yesterday to let the students know that today was Autism Awareness Day and people were wearing blue in support of awareness, it let me know that the administrators care.

          Tate with his two amazing teachers

On a much bigger scale, the campaign to wear blue for autism awareness is exactly what it sounds like. It is about educating the public. People today know so much more about what autism is than just a few years ago. It is partially because of campaigns like this. The Centers for Disease Control announced last week that the numbers are now 1:68. You would have to live virtually in isolation to avoid knowing people with autism in this day and age. The education and consciousness takes away the fear of the unknown. It diminishes the bullying of people with autism. Our education about autism causes people with autism to become so much more approachable. Awareness makes it easier for them to attend school, easier for them to find employment, easier for them to fit-in in their communities, and easier for their peers to befriend them. Even the word itself, “autism,” is becoming a word used in everyday conversations. Raising awareness if very important to us in the autism community. Awareness of what autism is will keep our children safer and cause their futures to be so much brighter.

Educating the public also means that children with autism may receive a diagnosis earlier and receive the early intervention they need. I am confident that every dollar spent on early intervention saves many dollars in the long run. So many of the children who receive intensive early intervention become successful in ways they could not have otherwise. They may need a lot less support as adults. The younger the intervention, the better the results. The brain is much more malleable when it is young. Education and awareness are so important. So next year, on April 2, “light it up blue” for autism awareness.

is your criticism really that constructive?

For starters I should probably say:  I am thrilled with my kids’ teachers and their paras this year!  Both my kids are having fantastic years.  My frustrations have nothing to do with classroom teachers, Resource Room teachers, or paras.  Tate and Sydney have the best!!

When the parents of a special needs child get “constructive criticism” from a community member or a school administrator, they have a decision to make.  Do I try to explain things and risk having an explanation sound like I am making lame excuses?  Should I nod my head and smile, ignoring the advice given?  Should I write a scathing letter and tear it up before I actually send it?  Should I write a letter that I have to tone down over and over so I can actually send it?  Should I close myself in a bathroom for a while and shed a few tears, feeling sorry for myself and wondering if the world around me will ever understand?  Should I seek out the mother of another special needs child who “gets it” so I can have a sympathetic ear for a few minutes?  Should I write a blog post and use that as “therapy” for myself?  Should I sigh a heavy sigh and just keep on plugging along?  I’ve done all of these things at one time or another in the past few years.  Today, I considered a letter, but knew it was either going to be the blog post or the tears.  Here’s the blog post:

Sometimes I just want to scream, “How dare you!”  “How dare you judge me, or my precious little girl!  How dare you offer me advice or tell me how I could do things better.  How dare you assume I COULD be doing things any better than I am.  How dare you assume SHE could be doing any better!  Try walking a mile in my shoes and then we can talk.  Try walking a mile in HER shoes and try to manage as well as she does!” 

I started my blog so I could share what it is like for Tate and Sydney to get through their day.  I sometimes aim at the people who work with my kids so they can better understand where my kids are coming from, thus helping those who teach them to be better able to educate them. True, not everyone who works with my kids reads my blog.  True, I have not invited everyone who works with my kids to read my blog.  Although it is public, not everyone in our lives is aware of the blog, nor do I think so highly of myself that I think everyone would WANT to read my blog.  I hope it is being shared in my community and by my friends, to raise awareness about autism, ADHD and the challenges these kids face.  If it helps anyone at all to understand then I am happy.  

When a parent of a child with special needs is struggling to get things done they need to be encouraged, not reprimanded.  If you tell me Tate isn’t eating healthy enough, don’t you imagine I already know that?  Don’t you imagine I have already spent many, many hours worrying about that and working on ways to fix that?  Don’t you imagine I would do almost anything to fix that? 

If you tell me Sydney is late to school, don’t you imagine there is a good reason?  Don’t you know that I KNOW what time the bell rings and I KNOW she is having to use up two or three MORE minutes jumping through hoops and getting a pass to class?  Don’t you imagine that EVERY morning we are RACING to beat the bell so I won’t have to say, “Honey, you are late so go into the office for a pass.” 

Sydney is often late to school.  I’d like to say “through no fault of her own” but I’m not sure that would be accurate.  I also cannot say “through no faulty of MY own” either.  She is late, partly because I dread waking her and going through the morning chaos, and partly because of all the unpredictability of the morning chaos.  Her pills take thirty minutes to an hour to really benefit us much.  (I’ve documented two typical mornings in blog posts on December 22 and April 28, 2012 if you are interested and haven’t seen them before.)  I do the best I can.  Sydney does the best she can and her brothers and sisters do the best they can.  She really cannot help her hyperactivity or the energy or the lack of impulse control. 

Wake her earlier you say?  The earlier I give her meds to her, the earlier they wear off.  By 8:30 PM when I am trying to get her in to bed, she is bouncing off the wall again, talking non-stop, getting out of bed over and over and unable to settle down easily.  If I wake her earlier and start her day earlier then we pay earlier in the evening.  Thus, putting her to bed earlier and waking her earlier is not really a good option for us.  The school staff and her classmates already get the best of Sydney.  Although, her classmates complain often about her they do not understand how much worse it could be.  I often wonder if I sent her to school once with out her meds if they would come to appreciate her more.  Not long after she gets home from school her medications begin to wear off and I deal with the “evening Sydney.”   

Switch medications you say?  We’ve tried several medications and the two she takes are the two that have worked the best and the longest for her.  She likes being calm and she likes being able to think.  She likes being able to have a calm, quiet conversation with me.  She is pleasant and able to learn while on the medication.  She fully understands that no one likes to be around the Sydney that is out of control.  She CANNOT HELP IT!!!  Exposure to alcohol in the womb robbed her brain of the ability to control impulses.  There is nothing she can do about it.  There is nothing I can do about it, except give her medication to help slow her down. 

Some days Sydney is more than a few minutes late to school.  On those mornings it is often because her eleven-year old brother with autism wet his bed the night before, thus adding a shower and the stripping of sheets to our morning.  Or, perhaps I let him try to pour his own milk and that resulted in him having to change his clothes and be reassured over and over that it was “no big deal.”  You see, almost any change in his morning routine is going to result in anxiety.  Do you think YOU could get a kid to school on time if he was pacing and stimming?  I won’t even ask him to get into the car unless he is calm and happy.  I’m NOT going to ruin his day, his teacher’s day and his classmates’ day because he comes to school in “melt-down” mode. 

Get HIM up earlier you say?  Kids with autism often have erratic sleep patterns and Tate does NOT sleep very many hours a night.  I allow him to sleep until the last possible minute if he is still asleep when I wake.  Usually, though he is the first one up at our house.  His teachers often think he appears sick or tired because he gets little sleep. Getting Tate and Sydney to school before the bell rings is always a goal but it is just not one I can afford to make my biggest priority.  If you had walked a mile in my shoes you would be able to see that a child with special needs does not always appreciate our schedules and there are some things that are much more important than getting to school before the first bell rings. 

I’m not looking for sympathy or pity.  I am actually very happy and pleased, even content, with my lot.  I only write to raise awareness.  If you feel like offering some advice or giving some constructive criticism to a mother of a child with special needs, think again.  Are you really close enough to her to offer that piece of advice?  Do you really know what her day looks like?  Why don’t you instead think of a way you can encourage that mom?