Saturday 18 February 2012

Well here we are....

I swore I would never do this....I am not a writer by nature, I usually leave that to my mom and sister.  But this year has been so overwhelming, and much of it has been impossible for me to share.  When things do not turn out how you expected it's difficult to explain over and over again, and no matter how supportive those around you try to be, there are just no adequate words.  A dear friend of mine opened my eyes to the fact that I have been closing myself off from former friends and social circles since my boys have been diagnosed with ASD.  I guess this is my new attempt at keeping people updated while only having to say it once.....Please be kind, I am new at this :)

Last February, my older son Jack was diagnosed with Aspergers syndrome.  While this was a huge blow to our family, Jack is a brilliant, funny and talented little boy, and we knew that he would likely function well in life with a little extra help.  He has been getting this help in the form of occupational therapy, special education, dietary changes and supplements.  We have had the new experience of visiting developmental pediatricians, and attending IEP meetings.  But for me, this diagnosis was no shock and was something I suspected almost from the time Jack was an infant.  He has always been obsessive, and I am not talking "my kid is obsessed with airplanes", I am talking my kid is OBSESSED with airplanes.  One in each hand at ALL times, never deviating and never hesitating to lose his shit the minute one of these said airplanes hits the ground.  Well, actually first it was stars, then it was grass (yes grass), and then it was airplanes.  Other signs:  the boy NEVER slept, his gross and fine motor development were slow and he could talk a blue streak from the age of 16 mos on. He could identify trapezoids, ovals, octagons at age 18 mos and pronounce them.  The first thing that really troubled me occurred right after my second son Nathan was born.  We were driving in the car, and as I pulled up to an intersection and turned on my turn signal, Jack began to scream hysterically, begging me to turn it off.  This continued for months, every time I needed to make a turn.  It progressed to other noises as well, such as the radio in the house, which we still cannot turn on unless we start it at a volume level of one and slowly increase over a period of about 15 minutes to an audible level.  That is how we were able to listen to Christmas carols this year. :)  The area of focus has progressed to robots, killer whales, hermit crabs, blue crabs.....but it is always there.  I am awakened each morning with "mommy have you ever seen a killer whale" (seriously, every day) or "beep, beep beep" at an insane volume, which is his robot alarm.  These things aside, this little boy is charming and hilarious. He is all of his therapists' favorite and with one squint of his eyes he can melt my heart.  Even if in the next breath he tells the family dog that he is going to die.....this is Jack's world and day by day we are learning to live in it while gently attempting to pull him further into ours. 

Enter Nathan.....
Nathan is our two year old.  Last week he was diagnosed with autism.  Rewind to last February when Jack was under evaluation.  I was asked repeatedly if I had any concerns about Nathan. My answer was always the same....no, no, no!  He had great eye contact, was always content, was babbling all the time and attempting new words like dog, Jack, etc on a daily basis.  I was relieved to report that Natey seemed to be developing normally.  He slept well, he was the easy-going baby.  Then it all started to change.  This past summer is when the changes seemed radical.  First were some sensory signs, he started stiffening his whole body in a way that we only recognized because Jack had done it too, he started making more monotonous sounds and (as I now know it is called), jargoning.  His physical development remained right on track, he climbed in a way that Jack never did, he was great with his spoon, which was an area where Jack always did and continues to struggle.  His speech slowed, then essentially stopped.  Long story short, because of Jack's history, mommy panicked!  And thank God that I did.  I had Natey in to Infants and Toddlers by September, and he showed severe deficits in all areas except motor development.  If you don't have a child with autism, it never occurs to you that if your child wants his cup, he might not tell you.  I will never forget the assessment that we initially went through.  The evaluator asked me to put Natey's cup out of his reach, tuck it into the diaper bag.  I did this, and watched as he walked over, tried to pull it out for a few minutes, then just walked away.  He didn't cry, didn't grab my arm and pull me toward it, he just gave up and went along his way.  My child was not content, he just didn't know how to ask me for what he needed!  This revelation still gives me nightmares. 

So Natey started getting services in the home once a week, I started him at Jack's occupational therapist, changed his diet, added some supplements, and hoped we were on our way.......nope.  I did not see much improvement in Natey with these changes.  More panic....Infants and Toddlers brought the head of their program to our home for further assessment and Natey qualified for 5d/week services in their autism program.  We are truly blessed that our county has an ABA program, and doubly blessed that the developmental specialist who had been working with him was astute enough to realize the home visits just weren't cutting it.  Natey has been in the program since the beginning of January, and now asks for more (guess what, no really, we have no idea until we try everything we own) and asks to go (where?  we have no idea, and sometimes he is actually telling you to go).  He told my mom to go when she arrived for a visit one day.  I said, sorry mom, but I've gotta be honest with you, I am THRILLED!  I have Natey on an even more restrictive diet than Jack's, he gets essentially 7-8 foods, and I spend approximately 10 hours a week cooking these foods to the diet's specifications.  I am giving him methyl-B12 injections three days a week.  We need to add a private speech therapist.  We need to go to a DAN (defeat autism now) doctor.  We need.....to do a lot more.  But we are at least on the right path, and sometimes that has to be enough.

Now to me.....maybe I have retreated a bit....ok, alot.  In my defense, it is very very difficult to go anywhere with the boys right now.  I pray that this will change.  Natey cries the minute I cross the threshhold into a store (Jack used to do this too, but is better about it now).  The assault of lights and sounds and other sensory input is just too much for him.  He bangs his head, he collapses onto me, he shuts down.  It's too much for Jack too sometimes.  Unfortunately, he has a tendency to curse which is just fantastic when you're out in public with your preschooler, let me tell you.   But this is just one reason.  It also has alot to do with MY issues, my fear that my children will not be accepted by their peers, or my peers.  And it has to do with sadness....it hurts me to see my children among more neurotypical kids who are doing all of the age appropriate stuff.  I am thrilled for the parents of these children, and love to see them.  My boys' diagnoses are very raw right now, I am still trying to process how unrecognizable my life has become.  I am not asking for pity, just a degree of understanding.  I am blessed with a fabulous group of mommy friends who we met when Jack was just a newborn.  I miss them greatly.  And I will be back!  We are doing a little better everyday and I am determined to do everything I can to help my boys. 

16 comments:

  1. I hope you know what a fantastic post this is! Keep talking. I'm so glad you started this blog!

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  2. Hey sis,

    It takes great courage to climb the mountains that you see before you daily. Yet, you are doing more than just trudging up hill. You are proving to your family, friends and your boys that you are very strong. That's a trait you share with your sisters. ;)

    It is not easy to state things so plainly and publicly. I find that putting my worries in writing can be helpful, but also makes them seem more real. Yet, you did it. That took courage, and I hope you will give yourself due credit.

    I hope that that process is good for you and that it will also help all of us come to understand those beautiful boys for who they are.

    Don't hesitate to call for help, even if you just want to rant for a few minutes. I've got practice with that too.

    I'll keep looking for updates, whenever they come.

    Love for you all.

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  3. "It also has alot to do with MY issues, my fear that my children will not be accepted by their peers, or my peers. And it has to do with sadness....it hurts me to see my children among more neurotypical kids who are doing all of the age appropriate stuff."

    Jenny,

    I sit here in tears because I could have written this myself. My biggest fear for Owen is that he'll never fit in and that his peers won't ever understand him. That's difficult for me on two fronts. First, I've never tried to fit in and it has at times left me on the oustskirts looking in. For me this is OK because I'm emotionally strong enough to deal with it but the truth it, my son isn't. I say it's OK for me but that doesn't mean that I think it's normal od that I want it for my son. He's everything I'm not. He's gentle, kind and he actually cares that people like him. It makes me sad when other kids look at him with the "What's wrong with you?" face. He gets it a lot, even from his friends. They aren't being mean, they just don't understand but to a parent, it is heartbreaking.

    Second, I want him to be able to emotionally defend himself and he's incapable of that right now. My newly 3 year old is on the verge of being able to tell you to kiss her ass but Owen doesn't understand when someone is being nasty and that scares the shit out of me. If I was told my son was gay, or quirky or even an asshole, I know how to parent that because they most likely got it from me or someone very close to me but to tell me that my son may be somewhat lost in his own mind, scares me like nothing else. I just don't know how to parent that. I'd like to learn but where do you begin?

    I don't know where Owen is and won't until after his Kennedy Kreiger appointment on Wed. but I'll be honest, I'm petrified.

    I'm proud that I'm your first follower. At some point when you're ready, you should set up your blog so we can get it sent to our inboxes when you update, that way I don't miss anything. I have that on my blog and it's helpful.

    Also, you don't give yourself enough credit. This was beautifully written.

    Michelle

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    1. Michelle, I will be praying for you and Owen this week....knew the appt was coming soon! I fully understand what you are saying, this past summer two little girls called Jack "weirdo" on the playground.....I almost pulled a Peyton from "The Hand That Rocks the Cradle", but instead I just said, hey back off, the kid likes robots! It sucks....

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  4. Jenny,

    You are still the same strong, wonderful friend I knew from 8th grade. While I'm so sorry to hear that you are faced with this challenge I have to say that while I was reading all I could think of was how unbelievably lucky your boys are to have you for a mom. I truly think we don't get more than we can handle in this life although at times it seems like we do. Your boys are beautiful. I am thinking of you and sending love your way. Kiss and hug those boys! (I'll check back on the blog too - I have no doubt that you are going to do amazing things. And really you already are.)
    Love
    Kate

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    1. Thanks so much Kate, your support means so much!

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  5. At first I didn't know what to think, but I am proud of you for doing this. This is the first step in defining the new "normal" for our family.

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  6. Jenny,
    Wow, what a wonderful mommy you are. I am so proud of you. I miss you very much and wish we were closer. I understand in times of stress, we distance ourselves from our friends bc we are just too busy with our children. I am glad you started this and I will be a follower! I am always here for you and I can guarantee you I understand this more than you think! xoxo, Megan

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    1. Thanks Megs, ditto, even if everything has to be texts so that we don't hear each other screaming at our kids :). not that that would ever happen......

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  7. Jenny,
    Wonderful post! Thank you for sharing. I bet that felt great to put down in writing. I look forward to reading your blog and get a better understanding of what you are going through. You are a terrific mom, Jack and Nathan are lucky to have you! Analisa

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  8. Jenny-

    Thank you for sharing your journey! Fantastic first post and girl...news flash...you CAN write;) I think about you and the boys ALL the time and I am happy I will have a way to follow your journey. Just know I am always right around the corner if you need anything! I am so proud of you and so happy for Jack and Nathan that they have such a wonderful momma:) xo

    Heather

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    1. I know we say it all the time and then never do anything about it but I MISS you!!!!! and you owe me coffee......hmmmmm......

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  9. Jenny,

    I am so glad you are blogging - for all sorts of reasons. Your posts are awesome (I always knew you are a great writer). And you are completely fearless in advocating (and cooking!) for Jack & Natey. They are blessed to have such an amazing mommy.

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    1. Their mommy learned it from her mommy....

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