Monday, 10 March 2014

High Functioning Autism: Yes Jack Can Speak, But He Struggles In Many Other Ways

My friend Joann and I have talked about this several times lately- the fact that parenting Jack is infinitely more difficult than parenting Nathan.  It doesn’t make intuitive sense.  Nathan is clearly way more affected by autism than Jack, or to an outsider, it may seem that way.  Honestly, I don’t think it’s so.  I think Jack’s life is impacted severely by his autism.  As he gets older, it’s getting harder and harder to watch.

The issues that Jack faces are considerable, but of course when one looks at the fact that Nate cannot yet communicate well, that he is so impacted every second of every day, and Jack is in mainstream first grade, it may not seem that way. 

I want to make it clear that I am extremely proud of my boy- he was recently “dismissed” from his special needs reading group, which mean he has caught up to his grade level- how huge is that?  Especially for Jack.  I talk about all of the “noise” that there seems to be for Nate, how many distractions there are in his own little head.  The same is fully true for Jack.  When John and I went away for a night last year it hit us just how quiet our hotel room was- that is because both of the boys almost continuously hum.  It’s verbal stimming.  Jack also does quite a bit of physical stimming- jerky movements, still some flapping of his arms, lots of jumping.  I’ve grown so used to it, that I forget how significant it is until we are out in public.  Do you ever wonder what your child must be feeling?  What compels them to do this?  I know they are seeking input, but I often wonder what that experience is like. 

Jack’s obsessions have driven me crazy for a long time.  When he talks about something, he TALKS about it- ALL THE TIME.  24/7, it never, never, ever stops.  He repeats the same things, lines of text or quotes from movies about the subject over and over again and then, since he is smart enough to know that you might tune him out, he requires you to respond to him.  He will repeat the same thing in your face over and over and over until you respond.  For a long time, it felt like John and I had lost our bond, because when we finally got Jack to sleep each night, we fled to separate corners of the house, really didn’t interact much at all.  It’s taken a long time, and lots of counseling and reflection for me to realize that we are running to opposite ends of the house because we literally don’t want to hear ANYONE talk.  Our ears are ringing.  RINGING.  It is that intense, almost all of the time with Jack. 

When someone new meets Jack, you can literally watch the progression.  It starts with “wow, he really knows a lot about blank, he must be really smart”.  Then a few minutes in, there is the amused smile.  Fast forward a few more minutes and the smile is frozen on the person’s face.  This is not to say that they don’t like Jack, but that they realize he is not going to stop.  And he doesn’t.  I can redirect him a million times; it has little to no effect.  It is really, really hard.  And the thing is- he is not being naughty.  He is rarely naughty.  How do you scold a child for something that they cannot control?

This impacts Jack’s life and well-being greatly.  He is happy in his world, I think.  But the more and more I watch him, the more it breaks my heart.  How must this feel?  To feel literally incapable of thinking about anything else?  To be this compelled to talk about the same thing, use the same words, over and over, to never feel satisfied or done?  If his words are this intense, how intense are his thoughts?  I don’t think I could tolerate living that way. 

And he is, Jack is living with this, and is in mainstream first grade.  It causes many issues for him.  He has a full-time aide to help keep him on task; this includes his walk to and from the bus.  He struggles to complete his work and quite often doesn’t. 

And socially?  He has been invited to two birthday parties all year.  One party was for a little boy he met as Cisco Center last summer, one for an old friend of mine’s daughter. So, in fact he has been invited to no birthday parties by kids at school.  He told me for weeks that one little boy was his best friend at school, but then in a moment of conversation, when he was really sharing with me he said that the boy told him that he sometimes likes him, but that he won’t invite him to his birthday.  Broke my heart.  He does not recognize these social “snubs” for what they are, but I do.  And I want to help him, but how?  I work full-time- I wish I could be in the classroom volunteering and keeping an eye on how things are going from a social perspective, but I can’t.  I wish I could be that mom that has time for play dates on a regular basis, but I’m not.  Most of my friends at this point are in the special needs community, which makes perfect sense considering our situation, but those are the main people who we socialize with on the weekends.  I mean, Nate has a birthday party to go to at least once or twice a month, because ALL of the families at his school are special needs families and we all invite all the kids- because we know what it’s like not to be invited.  It’s because Jack is with typical kids when he is in fact, not typical, that he struggles in this way.  He may not feel the impact now, but at some point, I am sure he will. 

So even though Jack is functioning, with assistance, in mainstream school, his struggles are many and significant.  I sometimes get caught up in worrying about Nate and lose sight of this, so I guess I am giving myself a bit of a wake-up call here.  It is so hard to strike a balance with these two kiddos with such different, yet substantial issues. 



11 comments:

  1. My 17 yo son has asperger's. He is doing so well, has come so far and yet, it is still on the fringe. It is an incredible amount of work and energy poured into these kids that make them succeed--that and prayer. Lots of prayer.

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    1. thanks for your thoughts- I really appreciate them especially from someone so much more experienced than me

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  2. As an adult with Asperger's, I can tell you I struggle with social snubs everyday. I am still learning how to deal with social situations and very often the situations do not go well. I have friends, mentors, and other people in the special needs community who help me on a daily basis. Without these people, my world would be very lonely. I know Jack will find his set of people who will help him through life. Jack is doing great and will continue to flourish. Keep up the great work Jenny.

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    1. Thank you! Your perspective is invaluable to me

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  3. Michael is also high functioning, so I know what you mean! If someone meets Michael for the first time and I tell him/her that he has high functioning autism, the person says, "Really? He seems like a regular kid to me." After a while the person learns about all of Michael's idiosyncracies. Then it dawns on them that, "Oh WOW, he does have some issues that could cause problems...especially socially." Thinking of you and emphasizing with you in many ways! Bridget

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    1. Thanks Bridget- that's a big bingo! exactly what it's like with Mr. Jack

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  4. My son, also named Jack and 6yrs old, is high-functioning, and is also very loud/talkative. i can relate to the ringing ears! We have just begun in-home ABA therapy after school, and having another adult work with my son while I'm home has allowed me to take a phone call, just sit down for a moment, make dinner without being pulled away by my son. Along wirh some breathing room for me, we are learning strategies for making our homelife healthy for us all! If your insurance covers it, I highly recommend it!!!

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    1. we are hopeful that those services are coming in the future, but not yet :(

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  5. I am an adult with AS. I can tell you that it is (unfortunately) harder to parent a pre-teen/teenager on the spectrum. Our hormones rage as our brains continue to grow. My mom went through many journeys with me. I give her infinite credit. We found so much help from MAAP Services. I would check their site out. Family is everything, but they need help too! www.aspergersyndrome.org (OASIS @ MAAP). With me, it was getting on some medication to manage my impulsive behavior & anxiety. Then, years later, finally, TRT and divine inspiration of earplugs and head phones not found in a drugstore (earplugstore.com). You & your family aren't alone.

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    1. Thanks so much for the suggestions, I will definitely look into it

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  6. Dogs have been proven to be a positive feature for children with autism and their family. These well-trained dogs can provide relieve as well as calm children who suffer. An Autism Assistance Dog or Autism Service Dog can change the lives of a family you just have to visit houlton institute.

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