Language Translation

Monday, November 28, 2011

Regressing? There Is Always A Reason.

Today I spoke with a heartbroken mother.  Her son who, a few months ago, seemed to be progressing nicely suddenly began to regress.  Through her tears she told me she didn't know what to do, or how to help him.  Times like this make my heart ache more than most, I think.  I cannot even imagine what it must feel like to be the parent of a child who not only stops improving, but begins to regress and fall back into that unknown world.

This was not the first conversation I've had like this.  I have had countless e-mails, phone conversations, and in-person encounters with mothers who have expressed this same gut-wrenching dilemma.  What do you do when he stops progressing and nothing you or the doctors or the therapists can do will get him moving forward again?  How do you keep hoping for improvement when all the professionals around you shrug their shoulders with a confused look on their faces?

There are many reasons a child on the spectrum may suddenly begin to backslide.  It could be his physical health.  It could be an emotional upset or trauma of some sort.  It could be diet related.  It could be environmentally related.  It could be.........

So what do you do?  Why was he progressing and then one day you suddenly wake up and he has stopped completely?  It just seems too extreme to be something that no one can find an answer to, right?  How could he be talking one day, and then wake in the morning without the ability to say a single word?  Or forgetting words he has used for 2 or 3 years?

There is not any one set answer for any child.  Sometimes it may be an illness he has been exposed to.  Other times it may be an emotional upset someone close to him is going through and it is too overwhelming for him.  With each child, the reason he begins to regress is as singular as are his fingerprints.  I can't really tell you exactly what it is without a one-on-one session with him.  But what I can tell you is this.  Pay close attention to what happened yesterday that made today different.  Or it may have happened a week ago and the meaning and affect of it is just now sinking in to his consciousness.

I have found that when a child is regressive, there is always a reason....which means there is always a solution.  We just have to look harder (and for a NeuroTypical person, in the unusual places) to find it.  I suppose this doesn't give you much to go on.  I wish I could give more, but each case truly is so very singular.  If it is diet related, that is fairly easy - put him on a GFCF diet.  It is harder to have a child on that diet.  It means more work for you and, if he's never been on it before and is a little older, it means possible tantrums when he doesn't get his regular meal that he loves so much.  But there again, you have to weigh out the cost vs. the benefit.  If he is healthier and happier more regularly, wouldn't it be worth two weeks of tantrums and meltdowns?  Here's the secret.  He's going to have the tantrums and meltdowns anyhow because his body isn't functioning in a way that he feels comfortable.

So the real question is, do you want tantrums and meltdowns with no end in sight, or with a light at the end of the tunnel?  If his body is receiving proper rest, nutrition, activity, and emotional support, then you will find him a much changed child.  His tantrums will be fewer and far between and meltdowns in the home will all but disappear.  As long as his needs (as listed above) are met, the only time you will see tantrums and/or meltdowns pop up at home is if someone else is having an emotional explosion (inward or outward).

I guess what I'm trying to say about the backsliding is that it is probably due to one of his needs not only not being met, but being seriously neglected.  He isn't sleeping well for extended periods of time.  He isn't getting vitamins and nutrients that his body so desperately needs.  He isn't being given enough one-on-one time and the attention he craves from those who care for him.  He isn't getting good, healthy amounts of outdoor exercise with fresh air.  Fix these problems and once they are all as they ought to be, if he still is not progressing, then you know it is an emotional issue caused by something he is picking up from someone else.

Then the task will be to filter out who it is.  Is it someone in the home?  Is it one of the children he interacts with at his social skills therapy?  Is it one of his regular therapists or doctors?  Is it his shadow at school?  Is it a new neighbor you are interacting frequently with?  Etc., etc., etc.  Once again, yes, this is a lot of work for you.  That is why it is nice to have someone who knows what they are doing and has done this before to walk you through it and help you learn the skills yourself.  It will take some time, but then you will be able to adjust things for him, no matter how often his environment and growth demand adjustments.

Once again I feel like I'm not giving you a lot to go on, but without interaction with each individual, I cannot accurately state one positions for certain....well.  Except this one.  There is always hope.  Don't give up.

This is yet another Mindy Gledhill song.  There is something about her music that just speaks to me and to special needs people.  This song is called "Hourglass" and it is very touching for those little ones who are so tender and precious to you.  I found this video on YouTube and loved it, so I posted this version rather than just one with the lyrics.  :)

Monday, November 7, 2011

If You Don't Believe In Him, Who Will?

I received a message from one of my favorite cousins the other day.  She and I were penpals growing up and, although our interaction is almost entirely on FaceBook, she remains very dear to my heart.  Anyhow.  She told me about an experience the other day.

A child has Autism.  This child was playing with her child.  There was a verbal exchange.  Her child left the room.  The child on the spectrum just stood in place - not knowing what to do or how to let go of what she was feeling.  My dear cousin wrote,

"I told her that she was okay (no blows had been exchanged.. just territorial discussions!) and she bursts out saying... 'You don't know. I'm AUTISTIC! And I feel like everyone bullies me. My parents, my teachers, EVERYONE!My initial reaction in my head was, hey, autism is not your whole existence, just a part of who you are, and your behavior should still be within social norms. So I repeated that she was okay and started to walk away. Then I thought of you and how you talked about not reading situations correctly and feeding off of emotions.

So I walked back and put my arm around her and proceeded to explain that no one was bullying her, that everyone gets stress in their lives and we all have to learn how to live with it. We had an interesting discussion. One of my favorite things she said to me was, 'You have stress too?'  I replied 'yes'.  She then said, 'Because you are a mom?' and I replied 'YES!'  She calmed down and went on to go play somewhere else.

So I don't know if I did all the right things. But I tried to convey calm peaceful feelings through it all."

I told my cousin that I could just kiss her for this!  It was so wonderful to read.  I wanted to share this for a couple of reasons.  First, I wish every child on the spectrum had someone like my cousin in their lives.  Too often we use the diagnosis as a crutch to excuse behavior.  It is meant, from my perspective, as a great guide for a starting place.  Yes, I may have to work harder than most people to be able to adjust to social norms.  But is that any harder than the person who is born a psychopath and we expect him to "adjust to social norms" or we lock him up?  I know that is going to offend some of you parents and loving ones, but please hear it from my perspective.  

Telling me that I am excused for my bad behavior because of my disability is just enabling me.  I'm not saying you should be hard on your loved one.  I'm saying you should expect more of them.  Does that make sense?  I'm not telling you to beat the child if they step out of line.  But I know, from my own childhood, that I am capable of adjusting to social norms.  I do not always understand the "why".  I do not always get the rules right.  A lot of the rules make no sense to me, at all.  But they are still the laws of our society.  Verbal abuse is verbal abuse, even when the person giving it is on the spectrum.  It still leaves a mark.  No matter what.  I shouldn't be allowed to bully parents, teachers, peers, etc. just because I am on the spectrum.  That, in my mind, is wrong.  So.  There you have it.  I know.  It sounds harsh and cold, but if I could convey my heart on this....

I see all around me, children who are on the spectrum.  They have been given a free pass for their behavior.  I feel like I am watching the parent whose child was born without an arm.  Instead of expecting that child, from birth, to learn how to do things without an arm, they coddle and protect and try to make life "easier" for this child.  What they don't understand is that they are just crippling their child further.  

I have some very dear friends whose daughter was born with most of her arm missing, she only has a couple of inches below her elbow joint, and no hand.  Her parents, being wise, knew that one day their daughter would have to learn to make it in life without their help.  So their hearts ached for her as they watched her learn to function with only one full arm and hand.  But I have spoken to this girl many times and asked her what it was like.  Her response is always the same (she is now 13).  She said that she doesn't know any different.  And that she is glad her parents let her figure things out as a child because she can do pretty much anything a person with two hands can do and it isn't any harder for her.  She adapted to her body.

I did the same, because my parents expected it of me.  Yes, it required ingenuity on my part.  Of course it was sometimes frustrating and aggravating.  Definitely there were days that I just didn't understand and had a meltdown.  But I kept going because mom and dad expected me to keep going.  Your children are giving you what you expect of them.  Whether your child is verbal or non-verbal, there are basic levels of conduct that can and ought to be expected of them.  

I'm not saying that you should expect your non-verbal child to politely say "hello" to everyone...that would just be plain asinine.  What I am saying is that if your child is having temper tantrums, you can expect them to change that behavior.  If he is throwing a fit, give him a consequence and when he has calmed down, teach him the proper way to express his frustration or anger.  Whether your child is on the spectrum or NT, this kind of teaching is the same.  

He can be taught to have a meltdown in a way that is not abusive to anyone.  He can be taught to express his frustration in ways that do not harm those around him.  If you expect him to listen and learn, then he will.  Yes, it may be frustrating to you that you have to repeat yourself over and over.  But that is better than learning that your son is being charged with assault when he is 20 and interacting with people in the real world.  Isn't it?

If you do not teach him appropriate behavior, who will?  If he goes to therapy and then comes home and the things he learns in therapy or in school are not reinforced - it is all for naught.  I'm sorry.  I feel like I'm preaching here, but this is just super, super important!  I cannot tell you the number of homes I have been in and taught this one principle and seen "miraculous" results.  If you hold your child accountable for the things that you would hold your NT child accountable for, you will find much different behavior patterns developing.  Oh.  Let me clarify one thing.  Hold him accountable at his neurological age, not his physical age.  

So, if he is neurologically 2 years old (even though he may be 16), expect him to act like a developing two year old.  Meaning, when a 2 year old has a temper tantrum, you correct them.  You teach them the words they are looking for to express themselves.  You help them with the skill they are grappling with that has caused the frustrated outburst.  You don't just let them scream and scream and terrorize the household.  

Expect your child to be capable of anything that someone their neurological age is capable of.  If you will do that one thing, you will see so much improvement.  I have watched it happen over and over again.  The families I've worked with who treat their child like a child who is NT at that neurological age have all had phenomenal results.  You have to think of him as that age, no matter what his body says his age is.  He is developing, at a much slower rate, but he is developing - so treat him like he's developing!!!  Meet him where he is not where he should be and he will blossom as you've never seen before.  But that also means disciplining him where he is and in the same way that is appropriate for a child his neurological age.  

Okay.  I'll be done now.  It's just really, really, super important for your child's progression that you understand this concept.  It is the difference that helped me move from moderate-low functioning to very, very high functioning.  If you don't believe in him, who will?  Your expectations of him need to be realistic, but also need to encourage growth, rather than consigning him to be where he is for the rest of his life.  There is nothing quite so disheartening for one trying to progress than the feeling that no one thinks he can progress.  Believe in him, and then treat him like you believe in him...even if that means disciplining behavior that is inappropriate for his neurological age.  You can do it.  And one day, he will thank you.