August 16, 2010

We Walk a New Alphabet

I took some time away from thinking. (Not really.) I took some time away from talking. (That’s more like it.)

Mostly because my whole being came to a choking halt when my son’s developmental pediatrician drew a little diagram in front of me to help explain why she felt that my four-year-old has obsessive compulsive disorder.

After that I heard the words “child psychiatrist” and “anxiety disorder” and I shattered.

I didn’t (don’t) know how to talk about it, the abrupt shift-change.

When my dad called that evening, I practiced saying it, got the words out calmly.  And he said, “Okay, sounds good,” and it was a non-issue, just another answer.  But I felt like I was ten years old screwing up my scales at the piano or getting a D on a math quiz.

“That’s crazy you know,” my husband said, letting me cry on him.

**

We’ve been on this road for so long, for a couple of years, the quirky what-if maybe-autism maybe-this maybe-that but not that and not that because. Because, I don’t know why not. I don’t know.

“I’m sorry,” I cried, later, but not to him. Alone. Thinking about what anxiety means to me, thinking about how it feels, how it runs in my veins and that I gave it to him.

(Shh, I know. I know I didn’t give it to him I know this isn’t my fault.)

His doctor looked me in the eye and said, “We do know that this runs in families, and with your history and your family’s history…”  She trailed off.

He sat on the floor on the other side of the room, squeezing trucks and lining them up.

I nodded, of course, yes, of course. Sure.

**

He’s four. He is four.

What does he have to be anxious about? Not bills or deadlines (does he feel it when I’m tense and stressed?) not death or illness.

(Oh but he loves to talk about death, dead things, broken things.)

His sensory integration issues don’t help, probably, his occupational therapist tells me, all warmth and smiles and keeping me from going crazy. He feels different, the world feels different, other kids stress him out.

“He doesn’t talk about being afraid that much,” I say (seeking evidence to the contrary of this distressing possibility), trying to remember every time he’s ever been afraid of something.  The dark?  That’s normal.  Dinosaurs?  Dinosaurs are scary, man.  Twisters?  Blame the Wizard of Oz.

But it isn’t cut and dry, none of this is. Hell, we don’t even have a diagnosis yet, just more appointments on the horizon.

**

I don’t know how to tell this story, only how to live it.  I fumble for the lines between his story and mine, I hope for the wisdom to know how to share this with grace and respect for a little indivdual who has only been around this crazy world for four years.

**

Bedtime and saying goodbye are the most rigid.  Ten kisses, a hug, and a short script.

This week, the script became more complicated.  Like a Doctor Seuss book.  Back and forth.

“Goodbye,” he says.

“Goodbye.”

“I love you.”

“I love you too.”

“I love you,” he repeats.

“I love you too.”

“Goodbye.”

“Goodbye.”

He watches my face, waiting for the right words, the whites of his eyes showing a little and I can see the need there.

Something I read last week talked about rituals slowly, as kids get older, becoming more complicated, becoming more disruptive.  I wonder at this as he bats his brother away and then simply screams inhumanly.  Because a careful line of toys has been knocked out of order.

**

As he squeezes and carefully arranges and then grunts and hums and squeezes some more, his therapist nods and speaks to me in hushed tones. “That is what it looks like to me,” she says solemnly.

But we agree, smiling, that it’s fascinating, that he’s fascinating.  So smart, so funny.  So absolutely loving.

I don’t know why the thought of autism was easier, and why this is more frightening to me.  I don’t know who my community is, or where to turn, or who else has kids like this or what the hell I do.  I’m scrambling to re-gain my footing, to shake off the stigma I never knew I held.

I feel guilty for being freaked out now when I felt so assured before.

**

He’s just a little kid, barely more than a baby, and anxiety disorder makes my brain fast-forward to middle school and high school and college and sleepless nights and unhappy adulthood and God-DAMN-it I just want my little boy to be happy. Happy every day. Happy. Not scared, not scared of things I can’t see or touch or fight.

I am his mother and if I could I would tear the monsters down with my fingers and fists, stomp them into the Earth with my bare feet, shatter them with an unholy roar.  You leave my son my alone.

**

When I pick myself up from my little meltdown, I settle into the words, into the thought of it, onto the road. This is a road I’m on, that we’re on together, that we’re all on. Slowly, so slowly, I’m coming to peace with the path—with the understanding that we have no destination. No final answer.

We only walk together, hand in hand, holding tight to each other.


This may or may not be related:

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  • http://finallyhomeschooling.blogspot.com/ Melanie

    I know that you need nothing more to add to your plate…but please look at the research in the similarities between Asperger’s and OCD. I have no idea. I am not trying to add to your frustration/confusion. I just know that my 20 yr old with Asperger’s has some very amazing OCD coping mechanisms. I’ll share some of my book marks with you:
    An older site, but encouraging
    The Asperger’s Connection
    Asperger Syndrome and OCD
    My most fav site ever with Michelle Garcia Winner, regardless of diagnosis

    I so don’t want to rock any confidence you may have in the diagnosis. I honestly am just sharing from my own experience from a bazillion years ago.

    Love that sweet son of yours….and love your sweet mama self of yours!

  • grace134

    Oh honey.
    I love you.
    When I say that I say it for reals yknow, not just as something that's easy to type cuz we're friends on the computer.
    Love you. Thinking of you and yours.

  • VDog

    I was gonna say Oh honey. But Grace already did.

    He is Okay. He will be happy.

    Huge hugs comin your way. xoxo

  • http://www.chibistruggles.blogspot.com Chibi Jeebs

    Oh, Maria. I can't even begin to imagine – my heart breaks reading your words, describing your frustration and hurt at not being able to tear the monsters down for him.

    “Shh, I know. I know I didn’t give it to him I know this isn’t my fault.”

    I'm glad you can this, even if… it doesn't feel like it right now, because it's NOT your fault AT ALL.

    Sending much love.
    xoxo

  • Samanthajocampen

    I wish I could hug you and feed you cake right now.

    Really.

    xo

  • http://www.sendchocolatenow.com/ Tina @SendChocolateNow

    Oh hon. I can help. If you just want to talk. I have been down this road before. You are not alone.

  • twomakesfour

    I don't have perfect words, of course. But I really feel your back-and-forth, the pain, the anger, the confusion…..it must feel so complicated with this new territory. Ha, and of course the mother's “oh shit what about 5, 10, 20 years from now” thinking.

    I hope the therapy and the work you all do for and with him gives you some hope. One step at a time.

  • http://awholelotofnothing.net A Whole Lot of Nothing

    I'm here for you.

  • http://www.almostallthetruth.com brenna

    He will be ok, you and he are not alone, there are people. Nothing is cut and dry, not even a diagnosis. Find the best people you can and start from there…

  • kathleen

    i don't have anything to say except you are a WONDERFUL mother. you are doing a perfect job.

  • Andi

    I'm speechless and teary-eyed, M. Love you guys.

  • http://www.letstalkbabies.com Lisa

    Oh hun, it'll be okay. He will be happy. You are an amazing mother, you'll help him walk this road as you walk it beside him. Hugs.

  • Jpippert

    Big warm huggy thoughts to you. You have somehow managed in the telling of this to be both strong and vulnerable, which renders you so beautifully faithfully gracious. You have not made more of it than it is, but neither have you made less of it. That, and your ending paragraph, make it clear this will work out as best as it can for all of you. Good wishes to you, all of you.

  • http://twitter.com/ianracey Ian C. Racey

    My four-year-old has become fascinated by death recently too. Maybe it's connected to my dad dying in December, or maybe to the fact that he's recently graduated to watching things where people actually do die, like Star Wars and Doctor Who. (When he first started watching Star Wars, he assumed that the soldiers who get shot in the opening firefight, when the stormtroopers board Princess Leia's ship, are just waiting for someone to come round after the battle and kiss them awake again.) But whatever started it, it seemed just to come out of the blue a couple of months ago. It's ranged from him repeatedly asking why the bad guys on TV want to kill people, to him coming to me in tears one day telling me that he didn't want his mum ever to die, even when she gets old.

    He's also always been pretty anxious, something that really bothers my wife, because she's very high-anxiety herself. Any time he has to make any choice whatsoever, we know we're in for a struggle trying to get him to do so, because he's terrified that he'll regret his choice later. And when we went to North Carolina for the weekend last week, we discovered he'd packed two outlet covers in his Cars suitcase, because when we stayed at the same hotel two weeks earlier, he'd noticed that there were electrical outlets in the room and he didn't want his baby sister to get to them.

  • http://twitter.com/ianracey Ian C. Racey

    Sorry for the double post. :-)

  • heathersebi

    You know what…? You are a fantastic mom. Why? Because you care. You care enough to care on a different level. Scripting sucks. It just sucks. It aches to the deepest part of your soul when you can't just have a “typical” conversation with your kid. And yet…you make it sound like everything's gonna be OK. I hope that you can help me see the beauty in my dark days.

  • http://sometimesmeaningfulramblings.wordpress.com/ Stacey

    I know how you feel. I'm going through it with my almost 8 year old.

  • http://twitter.com/babyrabies BabyRabies

    What a beautiful, touching, heart-wrenching post. I hope you find answers soon. I hope you all find some comfort soon. I wish I knew what else to say :(

  • Corina Fiore

    Maria:
    My love goes out to you and your family. As I sit back and read this, I feel your fear, your apprehension, and your amazing love, strength, resolve, and your complete acceptance of his fascinating little quirks that help make him who he is. You may find yourself adrift, not knowing your community, not knowing where to go next, not knowing what the answer is, but you will never find yourself alone.

    If there is anything that I have learned from living with anxiety, is our anchors matter. And in the days that we feel lost and adrift, we can go back to the simple, the routines, the little things that comfort us, and, we know, in those small moments, that even when there are no easy answers, we have our anchors that steady us and hold us.

    You are amazing. Your strength, resolve, and grace will guide you through. When it all gets to be a bit much, throw the anchor. It will steady you.

  • Jehefinner

    Can I just say, that as someone with a long family history of ASD (going back many generations, traceable to a mathematical savant and possibly further) and speaking semi-professionally (I used to be a carer in a residential schol for children with behavioural disorders, and my sister is a specialist in this area) that the description you have given is as much autism as OCD. Many autistic children have very complex coping mechanisms and routines, and I think you would be wise to get a second opinion on this. Anxiety and autism to go together often, so many autistic children are so sensitive to the slightest change, they get very anxious, but this doesn't make it OCD, it's often more complex than that.

    On a brief practical level, have you made any dietary changes? Many people with ASD's respond well to removal of gluten and/or casein from their diets (http://www.gfcfdiet.com/) I have ADHD and the less casein I have the clearer my head is, I also have coeliac disease, and have seen improvement in my concentration and mood since going gluten free.

    I wish you well, and hope you find a way to make your lovely boy happy and content.

  • http://macyfron.com/blog/wordpress Lucy

    I can't imagine how hard this is for you. Twenty something years ago my sister's preschool teacher recommended my parents take my sister to a psychologist. They didn't. In high school her anxiety was awful and they finally took her to see someone. I just wish they would have taken her sooner and to someone who could actually help teach her some coping mechanisms rather than just hand out some drugs. She still struggles so much and all I keep telling myself is that if my children need help I will get them help as early as I can. You are clearly getting help early and hopefully that will help him in the future to not be afraid to ask for help and to also teach him how to help himself with coping mechanisms. Good luck! And yay for you getting him the help he needs!

  • PrincessJenn

    The fact that you're taking so much time and effort to make sure he has the correct diagnosis, speaks volumes. He won't be one of those kids who muddles and struggles through school because you care enough to get him the help he needs right now. And that makes you an amazing mom.

  • Gia79

    I'm writing this to you only because I remember reading something you wrote about baptising your son. You weren't sure if you believed it, but you did it – or something like that. What I want to tell you is this, if you believe in god and have faith then you should know you are already healed. Your son is already healed and will be free of anxiety – and if you talk to him about God, that he has NOTHING TO FEAR, because the most powerful force in all existence loves him and promised to send not one, but thousands upon thousands of angels to his side when he needs them, he will feel safe. I'm going to send this scripture, because god said his word will not come back void:

    “He personally bore our sins in His body on the tree that we might die to sin and live to righteousness. By His wounds you have been healed.” I Peter 2:24

    YOU and YOUR SON are already healed. Have faith. I leave you with this… “BE STILL, and know that I am god.” Don't look anxiously about, Maria. Be still. Pray. Have faith. Give your son the power of prayer. The flesh (ie doctors, therapists, teachers) alone cannot help – you need god, and through the power of god, you will see mountains move. But you must do it through faith. Know that you are already healed, and none of his words, as he promised come back void.

    Love you girl~~~

  • http://insertwittytitleheremomstired.wordpress.com/ Gamanda

    Your honesty, the way you put all of this to light, it just amazes me. You are so fantastic with words and the descriptions, I feel your pain aching my heart. You are such an amazing mother. No matter what your son's diagnosis becomes, you are doing everything in your power to make his life whole. Genetics may have given him these obstacles, but YOU are building him the bridge to get over them.

  • amelie522

    You are an amazing, incredible, dynamic and loving mother. Your little boy, your baby, he will live a lovely life, with beauty and love and happiness, because that's how you show him life is to be lived. You are my hero today.

  • http://twitter.com/beckymochaface beckymochaface

    By walking with him, you are fighting for him. I pray you find your community. Your place. They're out there.

  • Angella

    Aw, Maria. I'm sorry…being a Mom/kid is heard enough without extra issues to deal with. Sending hugs.

  • http://twitter.com/AnnabelleSpeaks Anne

    I'm sorry you're having a bumpy change-in-maybe-diagnosis time, I feel for you. This will be okay, too, just like your previous maybe-diagnosis of maybe-autisim. Give yourself some time to let it sink in. You and your boys will be okay; I know it.
    *hugs*

  • http://ifmomsaysok.wordpress.com Tara R.

    I've been where you are, still there many days, but having a name, is a big part of the battle. There will be times when you will have to fight for your child, and don't be afraid to be loud about it either. You and his dad will be your son's more powerful advocates – learn as much as you can, ask every question you have, and demand answers.

    As hard as this diagnosis was to hear, that it came this early will help you and your son begin treatment at a very important stage in his development.

    Good luck to your whole family, together you all will weather this strong in each other.

  • Irishsamom

    Oh mama, my heart hurts for you. But whatever you do, don't despair. I have a close friend who has walked a journey similar to your son's with her daughter and if she learnt nothing else, doctors can be very anxious to 'label', or 'name' something that is different. Maybe it's just a developmental phase and I'm not an expert, but I have seen many children as a teacher, going through some of these differences and very often they got better, or matured and improved or got the right diagnosis and were able to be helped. I know it can't be easy as a mother – you want to trust the doctors, but believe in your own instincts and your husband's, ask questions, question the opinions and get another or more if you need to. There just seem to be more and more labels these days and more and more diagnoses – not that I'm saying there aren't real issues and some children have them, but there are also many grey areas. I saw children thrive when I was teaching in special ed, just because they were understood by the people that loved them.

    That said, don't beat YOURSELF up with the family history. I have a family history of severe anxiety and depression and I have been on the bad side of both of those. I still have panic attacks and struggle with it all the tiime. I constantly find myself doing what you do, waiting for the other shoe to drop and I blame myself when I see my daughter exhibiting the classic signs of anxiety. It's too easy to take the blame, when what I should do is be aware of it and seek help for her. I hate to think I have passed it on, but please be gentle with yourself. I also saw so many children (my daughter included) with what seems like an obsessive need for order and control in her life, exhibit signs of OCD. It could be their own way of trying to sort out how they are gong to relate in the world. Keep your heart up Maria, and mostly advocate for him – you can't change family history, but you can fight for your own instincts. *hugs to you*

    Hope you didn't mind me chiming in here. x

  • http://mommywantsvodka.com Aunt Becky

    My heart hurts for you. I'm sorry. You're both going to be fine, I know this, but it's not always an easy road. It never is and I'm sorry. I wish it was easy, but it just doesn't work that way.

    Sometimes, when I am feeling excruciatingly sorry for myself, I'm back to 4 year old Aunt Becky sitting in her closet crying, “IT'S JUST NOT FAIR.” Probably mad then because I didn't get the My Little Pony I wanted.

    Now, it's all so much harder.

  • hockeymandad

    He will be happy. Very happy. He will do great things in life, clearly he is of high intelligence.

  • Elizabeth @claritychaos

    OH honey. This – “I hope for the wisdom to know how to share this with grace and respect for a little indivdual who has only been around this crazy world for four years.” You will find it. You will do it. You are a wonderful mother and person with so, so, so very much love and empathy and compassion and you will make it down this road, even if you can't see more than a foot in front of you as you go.

    So much love and mama-strength I send to you, Maria.

  • http://www.messponential.com/ Messponential

    Maria, honey, I love you, George, Chipmunk and Moose very, very much.

  • Jill

    My heart hurts reading this … mostly because I have a daughter that has her own set of issues that for years we've been trying to identify and work with.

    Sending good thoughts your way.

  • http://www.miss-britt.com Miss Britt

    Oh sweetie. Love. Love to you and George and Chipmunk.

    And you know – you're still doing what you were doing a month ago – trying to find the way to fight his monsters for him. I wish it wasn't so important to TBTB to have a name or a group, although I can see how that would make it easier to get support. To find your tribe.

    I'm just.. :-(

    Love you.

  • http://twitter.com/The_Daver The Daver

    You get it. That's the important thing. You get that your son experiences the world differently. Once you have that, you have the foundation to build what you need to help him. It isn't easy, but the love and the care and the thought you are putting into it is making a difference, whether he can express it or not. You are not alone! Much love and support from us.

  • http://www.barnmaven.com Barnmaven

    Hang in there, Maria. My son is five and is diagnosed both bipolar and with anxiety disorder. We start kindergarten in two weeks, and our team is all in place. We've lived it somewhat already with my daughter, who is going into third grade. She's been on medication and been working with a team consisting of her pediatrician, her psychiatrist and her therapist since she was a kindergartener. She is bipolar and ADHD. I'm not going to lie and say the road hasn't been rough. There have been days I have felt I could not put one more foot in front of the other. But today, unless you were really paying attention and noticed that her social skills weren't quite the same as her peers, you would not know that she had been a child who was expelled from three daycares, who started school in an intervention program, who used the throw bookcases across the room.

    Early intervention is everything, and what you are doing for your son by talking to doctors, by considering the best ways to help him – these are the best things you can be doing. Too many parents want to deny that a problem exists and they don't get the help either as early as they should or at all. You are the best advocate for your son and that you are concerned and involved means all the difference for him.

  • http://asouthernfairytale.com Asouthernfairytale

    Maria, so much love to all of you.
    I don't have any magic words all I have is friendship, love, support and an ear or a shoulder any time you need it.
    I'll always be here, cheering you on and supporting you and loving.
    xo

  • http://www.brokennerves.net Melissa Dominic

    <3 nothing but love and support here, my girl.

  • twesely

    Big hugs to you, Maria. I so admire your ability to write, wear your heart on the screen.

    An OT friend was telling me this weekend she thinks autism tends to be more socially acceptable or recognized than some other diagnosis — I don't have enough experience to have an opinion — but your words about not knowing your community with this new almost (?) diagnosis seems related.

    All the more reason to write it, tell it. (As you can, as you are ready, as you are doing.) If you write it, they will come. And so will the rest of us.

  • http://www.avitable.com Avitable

    With parents like you guys, he will be happy, guarandamnteed. And he'll figure out how to take care of his own monsters, too.

  • http://twitter.com/WalkTheRope Dre Ed.wards

    The initial shock of it is always the hardest, at least for me. And then there's acceptance and then there's learning how to change your lives enough to help him but not so much that it alienates the rest of the family.

    My oldest is 6, gifted and highly anxious.
    My youngest has corn-induced autism (along with severe corn allergy), sensory processing disorder (SPD) and OCD. We have come such a long way, but there are always things that pop up out of no where and throw me for a loop. That's where having a great support system comes in handy.

    You will incorporate this into your lives and keep on living – better than before. Yes, you will.

  • http://twitter.com/MommyNews Judy Masucci

    <<HUGS>> Maria – I can't even imagine what you are going through. And I wish I had some healing words to pass along.

  • http://www.amalah.com amalah

    The in-between parts are the WORST — the zig-zag that comes up just when you think you're finally on a straight path, or when suddenly someone mentions something you weren't expecting and you're surprised that it still rattles you so hard, after everything you've already dealt with, but it still feels like a huge wave of smog settling down in front of you, and everything becomes as uncertain and scary as that very first visit with the very first missed milestone.

    It's my least favorite place to be, too. I wish we could have gotten more than that one quick hug in the lobby, because man, we have so much in common. Mostly though? A pack of really amazing awesome little boys.

  • http://twitter.com/alanamorales Alana Morales

    I am so sorry that you have to go through this. I have a kiddo with anxiety and ocd tendencies, so I can relate. Hang in there and do what YOU think is best for your little one. ((hugs))

  • Anymommy

    He'll make it through. He has you.

  • Maria Anne M

    We're thinking about trying a diet. It's difficult with him in school!

    He's seen a developmental ped twice and both times (over 2.5 years) she's felt that aspects of his personality rule out the autism/asperger's spectrum. He's a pretty social guy with a really goofy, active sense of humor. He has a VERY hard time socializing with other kids, but I have to defer to the pediatrician.

    That being said, the doctor he sees in mid-September will basically start from scratch with him and may have additional input. He specializes in the autism spectrum, childhood anxiety disorders and tics.

  • http://www.mommyxxme.blogspot.com Nina

    The fact that he has such a loving, caring Mother makes all the difference. I'm sorry he, you, your family are having to go through this, but AS a family, you WILL make it through.

  • http://www.babygatorsden.com Joanna

    Hugs. I know he's going to grow up to be a wonderful man with a Mom like you. I'm sorry you guys have this bump in the road :(

  • dashoff

    Oh, Maria. I wish I had words. You may not be able to fight the fight for him, but you're giving him all the tools you possibly can. Love you guys so so much.

  • http://twitter.com/thesecondset Jennifer McPherson

    I am sorry you are going through this. Life in general is not easy but when your child has issues life turns from difficult to downright crazy difficult. One of my daughter's (she is 18 yrs now) began life as a very difficult baby, toddler, preschooler and so on. It was when she was 3 that I decided I needed some help and sought a counselor. From there we went to psychologists to psychiatrist. It was a ton of maybe it is this, maybe not or maybe that. I think she was 8 years old when they diagnosed her with bipolar disorder (and up until then they were not sure and reluctant to give a diagnosis). To this day I am not 100% certain that is what it is but what I know… is she is different. She functions in her own way. I spent a lot of time with her doctors trying to help her, best I could. I have empathy for you because it is a lonely place to be, which support group do you join if you don’t have a clear answer? Which one of your friends can relate to what you are talking about (chances are none of your close ones). I will keep you in my thoughts and if you ever want to vent! Chances are I may have some of the same experiences.

  • http://www.ooph.com/ Stefanie

    It is hard to know we somehow passed it on to them. Though not our fault, our genes. I watch the struggles my oldest son has with anxiety and grow bitter and angry as hell because I feel like I need to fix it for him. I couldn't for me, but somehow I have to for him. I am sorry you are going through this. It is hard. My consolation prize is that I can relate to my son. I see what is happening even when he can't and I am able to help him. To talk him off the ledge and to maneuver his path every so slightly to make it easier for him. You are all in my thoughts.

  • Jodifur

    It's going to be going ok. He's going to be ok. I know you don't know that now, but it will, and he will. It is just words and labels. Your son is your son and you will love him and get him the help he needs. It is ok to be sad. It is ok to be scared. You feel what you feel.

    I'm here. We are all here.

  • http://twitter.com/aMarketingMama Erin Lane

    I have no words. Just wanted you to know I'm sending hugs and prayers your way.

  • http://creative.spayce.com pixielation

    You – and he – are all going to triumph over this. You'll have to work harder than other people, but you'll do it and you'll make his life great.

  • http://www.notesfromthecookiejar.com Scatteredmom

    Ah Maria, this post made me cry. I felt exactly the same when my son was diagnosed with a learning disability, and we knew something else was there but not exactly what. Four years and countless times of me beating my self up (to the point of considering suicide for a moment), he was finally rightfully diagnosed with dyspraxia, anxiety, and spd.

    The world got easier after that. We had a name, a face for it, and I no longer felt it was my fault. I don't know how to say this without sounding contrite, but over time, it does get easier. Oh the facing the demons doesn't get any easier, but now I know it's not me, or him. It's the dyspraxia talking.

    Somehow knowing that makes it easier for all of us.

  • http://twitter.com/jwilliams057 Jennifer Williams

    Oh gosh. Wouldn't it be so much better if life were easy and the questions were simpler. If we could chase the demons away with “monster” spray and kisses really did cure all the hurts that they feel. Being a mom is so hard. Saying prayers for you and your little one.

  • http://raisingzoeyjane.com Zoeyjane

    I feel like I should call you, because I have so much to say, but this is yours and his story, so I won't be so selfish. But here's some minor points:

    Zoë's anxious behaviours decreased immensely when she went gluten- and dairy-free.

    I understand, 100%, the guilt and need to apologize when your child gets a line written on their medical chart that's the same as one you've got. I understand flashing through your most crippling moments with that line and projecting them into your baby's life. I know what it's like to feel as if you failed the most important test – the genetic one. But the thing I had to learn and hold onto with dear life was that we are probably the best people, who can give the most to and soothe and prepare our kids for this stuff. We know the ins and outs, the precursors and stressors, the things that will soothe and those that will chafe. We know how, on some level at least, to teach our kids to accept these things about themselves, instead of merely fighting their own synapses for the rest of their life, not feeling good enough or smart.

    That being said, my extreme suggestion is to seek out some form of group therapy for you. So you can find that community, live, in person – people you can call after a particularly hard day, who *get it* and who will not listen to any sort of self-blame you try to push out, while they push tea into your hands.

    Mad love to you, to everyone.

  • mc in Toronto

    Slow down You will be OK. He is OK. He is health. He has quirks. So do we all.. I have a 7yo. Not entirely dissimilar. Some stuff, your son will grow out of. Some stuff will take work. Sometimes, drugs can help and then they can then be weaned off. Sometimes they will need the drugs for longer/maybe forever, but they exist and they can help. OT's can be awesome and you can think of them as a shrink for your child. Mine asks to see his OT when he is uptight, even though she is very hands on with him. ASD can also means Asperger. The intelligence, the loving..and yes, the sensitivity to this world and to others, those are all great things to be happy about. The rest can be managed, improved on and in most cases, learn to be lived with. We all have our issues! :-) ALSO, be glad that you are already investigating with experts onside at 4.I knew at 4 something was up and the doctor who was supposed to refer us for full assessment failed to.. leaving me to feel like an overprotective mother – as everyone suggested verbally or otherwise… for years.. only to go through the whole first steps again at 6.5. Finally, we have a diagnosis… and we can move forward from that place, with the right mindset and tools. Take time, breath…Check out some Aspie sites, might be useful for overviews of some of the maybe's in your mind.Also Dr. Manassas' book on Anxiety in children and Paula Aquilla's on sensory issues, good places to start. Chin up!

  • Editdebs

    My son, 15, also has OCD. It is often hard, but he is a smart, loving kid. You are doing all the right things–and that will mean so much to him. I know my son will succeed, and so will yours. Hugs to you all.

  • Kimmad

    Maria, I hadn’t been to your blog in a while, so I just read this about your son. And I just want you to know, I’ve been there, I AM there. My 8 year old son was just diagnosed with separation anxiety and depression. I’ve struggled with depression and anxiety all my life, and I feel like I gave it him. I know how you feel. I really don’t have anything else to offer but support. Just remember, you are not alone, and you will all get through it. Hugs and prayers to you and yours…

  • http://supportforspecialneeds.com/2010/09/21/writing-for-connection-maria-melee/ Writing for Connection: Maria Melee | Support for Special Needs

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