Avoiding Crisis

the one in which i tell you about how my world has changed….

with 14 comments

you see, many many months ago i began to wonder. 

why was he always lining things up?  why were the tantrums so intense and so out of the blue?  why did he have to always be the one to the open and close the doors?  all of the doors.  why did he repetitively open and close the doors?  why did he rock back an forth in his seat when he was busy concentrating?  why didn’t he always respond to his name when he was called?  why did he sometimes zone out?  Why wasn’t he talking like the other kids his age?  why wasn’t he playing with the other kids?  why was he alone, content, in a corner, reading a book, but not really reading a book, just staring at the pages?

i talked to people about it.  to my parents who had dealt with their own developmentally delayed child.  to my friends who had kids the same age as mine.  to teachers, doctors, therapist.  I told them about his behaviors, about his quirks.  They all told me that he was smart, that he was adorable, loving, and perfect. 

And he is. smart, adorable, loving and perfect.

But, he’s also something else.  And what that something else is I don’t quite know. at least not yet.  

here’s what we do know.  after a week of testing we know that he has the receptive language of a 4 year old and the expressive language of a 2 year old.  that he has bilateral hearing loss at 500 hertz, which they tell us, if you are going to have a hearing loss this would be the frequency to have it at.  That he has a social communications deficit — apparently he can not take the perspective of another person and does not recognize non verbal social cues — a delay in both verbal and non verbal speech and language and he has behavioral issues related to his inability to mange/control his emotions. 

We were told that he would need speech and language therapy and that we should be looking into applied behavioral analysis. 

We heard a lot about the spectrum.  the f-ing spectrum.  how our son, our precious little boy, may very well be on the spectrum.

autism. pervasive development disorder. aspergers. the spectrum.

i look at my little boy differently these days.  i cry a lot.  i freak out.  i panic.  i cry.  he just goes on as if nothing has changed.  it’s better that way.

i deny.  i tell myself that they are wrong.  that all this worrying is for naught.  that Friday’s phone call to the doctor will be nothing more that a casual chat where she tells me that everything came up fine.  that there really isn’t anything to be concerned about.  that her initial observations were way off. 

i cuddle him up in my arms and tell him i love him no matter what they say.  that he’s my little boy.  that he my wonderful, adorable, perfect little boy.  and then I tell him that mommy is going to make everything all better. 

and then i remember the tantrums and the repetitive behaviors and the sensory issues. 

i lie. i can’t fix this.  there is no magic bullet.  i don’t even know where to begin.

this is something that happens to other people.  not to us. not to my little boy.  haven’t i already fought enough demons for all of us?  Haven’t I already had enough therapy for us all?  isn’t one family member with mental issues enough?  haven’t we filled our quota?

And then, the guilt.  It’s my biology, my genes, my fault.  He picks at his face when he gets nervous or frustrated.  Little teeny tiny scratched from his own nails, caused in his sleep or during a tantrum, become raisin sized scrapes, the result of his own nails.  He doesn’t even know he is doing it.  “mommy. look. boo boo.”  I know he’s doing it.  

whatever it is. whatever all those tests show.  we will find out on Friday. 

whatever it is.  my world will never be the same.

this has to be the longest week of my life. 

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Written by nicolemarie

February 20, 2008 at 9:39 pm

Posted in crazy kids, crazy mommy moments

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14 Responses

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  1. First of all I want you to know I am here for you if you need to talk. I wish I were there right now. Second, Owen is the sweetest most loving most active little boy I know and I truly do not believe for a minute that he could be autistic. He may delayed in a few areas but those things correct themselves with time and if need be, with some professional help. And by the by – you have fabulous genes!!!! We all feel like we have faults and if we all worried about passing them on to our children, earth would be a pretty empty planet……

    Corinne

    February 20, 2008 at 10:09 pm

  2. hi darling – reading your latest blog (and I’ve been reading for months now) I was honored that you would share this experience with us. For you might want to look at it as an experience. I know, I know, right now, re-reading what I just wrote – I already have a few (ok, many) choice words for myself. It’s not easy and it’s not going to be, whatever this all is. That’s the thing – whatever it all is, we don’t know. What we do know is that Owen has an amazing support system. YOU have an amazing support system. THOSE are the known and I hope they they can bring you calm, strength, hope, strength (yea, i know, twice, but needed), creativity, strength, warmth, love, understanding and strength (yep, one for each of your familiy members).
    Easier said than done, again, but at least it is said. And I echo Corrine’s thoughts(thanks lady!) – no one is to point fingers at – certainly not you. If anything, I’d like to point to you when I think that Abbey and Owen will gain your qualities – lucky SOB’s (not calling you a B). My thoughts are with you, Owen and your loving support system. LOVE & COURAGE.

    kb

    February 21, 2008 at 12:58 am

  3. Nicole – your world has changed, but you have not. You are still the same loving, worrying, playful, serious mother to your children. Whatever the result of the testing, approach the parenting with dispatch, creativity and heart. Please dont’ let the ideals of “perfect child” diminish how you go about being with Owen, so you can support him in becoming the best person he can become. G

    suburbanlife

    February 21, 2008 at 4:20 am

  4. I will be praying for Owen and especially you! It is so hard being a mom in general, and with this I can only imagine how long this week has been for you. I truly believe that God does not give us more than we can handle. I have always thought of you being strong and determined. I have a tremendous fear of passing my diabetes on to my girls, especially Lee. She has the same reactions to an empty stomach…cranky….and she is already showing some signs. I also feel like we should be free of all medical issues bc of my diabetes, but that has not worked out for us so far. Please let me know if I can help or if you want to talk.

    Julie

    February 21, 2008 at 8:31 am

  5. Nic, you know this is not your Fault. This is not your fault, this is not your punishment, this is not a test of your strength to see if you can survive. It just IS. And you will find the path through (the path that is right for you and for Owen) even if you have to crawl, because that is what you do. (and you do it quite well) I’m a strong believer that our past is our past because it prepares us for what is coming in the future. And I think that your past, your therapy, your pain, your struggles – they’ve all be preparing you to help that sweet boy now deal with his own demons. You *get* it. And you are uniquely prepared to help Owen *get* it in return.

    Theresa

    February 21, 2008 at 10:09 am

  6. I love what Theresa said! I completely agree with what she said.

    Julie

    February 21, 2008 at 12:18 pm

  7. I came across your blog and I wanted to let you know that whatever your son “has” he has an excellent support system. Many years ago people did not have the resources that we have now and many children were forgotten and cast aside. My sister in law is one of those people. My inlaws just assumed she would be “ok” and “everything would be fine”. So now she is 35 years old and does not leave her room. You are light years beyond their level of understanding. I don’t even know you, but I can tell by your writing that you are a loving caring mother. I’m not saying that my mother in law is not caring, but so much time has passed and she is still treating her daughter like it was 1977. Use your resources and your instincts. Those two things together will help you move mountains.
    Stay strong and keep writing beautiful entries.

    Unspoken Truth

    February 21, 2008 at 5:54 pm

  8. Having gone through this myself, I encourage you to listen to the doctors and specialists as well as your support group. People told us for over a year that the kids were just delayed and going to be fine and there was nothing wrong with them. But there is. It is autism. But it’s not the end of the world. The earlier you get therapy started, the more progress you can make, and you can help them learn to cop with our crazy world. It’s hard, but you can do it. I’d be glad to listen and help if I can. You’ll be fine. So will he. You just may not be what you expected two years ago.

    awalkabout

    February 21, 2008 at 7:59 pm

  9. thank you all for your words. for your support. i hear what you are all saying, i really do. just right now, at this moment in time, i don’t feel very strong or very capable. i know this helpless feeling will pass.

    nicolemarie

    February 21, 2008 at 10:07 pm

  10. Once you’ve dealt with your initial feelings, I sincerely believe you will tackle this with a renewed strength, research, etc. In the meantime, I will be praying for you and the family.

    Sincerely, Angela

    Angela

    February 21, 2008 at 11:40 pm

  11. Sometimes we have to go through trials so we understand better our life. But, you know what sometimes you just don’t want to deal with it. My only way of help is God. You and Owen are in our prayers.

    Cleia Peterson

    February 22, 2008 at 12:19 am

  12. You and your family are in my thoughts and prayers. Whatever the diagnosis, I have no d doubt you will handle it with grace and love. Take care of yourself – take care of your family, and you know – it will be alright. It really will.

    Courtney

    February 23, 2008 at 1:53 pm

  13. THERE YOU ARE! I couldn’t find you after you commented on my blog (I’m asdmommy). I’m sort of new to this blogging thing. I so WANTED to find you after your post to me, but I couldn’t, and today there you are!

    I promise, promise, promise, you won’t be so overwhelmed down the road. Well, you will, but it will be a different kind of overwhelmed (kind of like the sleep deprived mom of a newborn vs. the tired mom chasing a toddler around), and you’ll be able to handle it better. I PROMISE!

    My one little piece of advice to you now would be to run, run, run if you find a doctor who says to wait and see. As walkabout said, now is the time – therapy is fun now and is helpful to these little guys. My little guy was/is so sweet, loving and snuggly we never thought he could have autism, but he does. And I can tell you he is one of the coolest kids I know.

    I’m going to read the rest of your posts now. Hang in there, allow yourself some time to adjust, and know there’s lots of us out there who have been where you are and have come out on the other side. You’ll get there, I promise.

    HUGS! Darcy

    wilddaisy33

    February 26, 2008 at 3:51 pm

  14. […] in February 2008 I wrote…the one in which i tell you about how my world has changed…. […]


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