The honest truth

July 18, 2012 by in Autism, Inspiration, Parenting, SPD with 24 Comments

I have wanted to write something for the SPD network for a while. I wanted to write something funny, witty, or smart but let’s face it, I am not intentionally funny, I am rarely witty, and I am not the smartest kid in the class, which is all ok. What I am good at is being honest about my emotions and leaving myself open for anyone to read, so that that is what I am going to do.

We are in the midst of a whirl wind of testing, diagnoses and life altering changes here in our house. It started last year when we were told our then 2 year old was talking at a one year old’s level, turning into a diagnose of SPD and PDD-NOS, we are now waiting on the final piece when we meet with the specialist this fall.

I am a wreck. When we started this journey I jumped right into reading blogs and message boards for special needs kids, specifically kids with SPD and/or autism. These amazing moms are funny, strong and smart and I am none of those. I sit there reading their blog and think “God, I wish I was like her.” They must have some super mom power I missed out on, and I wish I knew their secret because they amaze me.

Me? I am that mom on the couch angry, crying and feeling confused. Not every day, but often enough. I mean there are days that I feel like I am in control, that things are getting better, and that this is going to be new and exciting and awesome. Then my son will not sleep, or he will hit his head so hard he bleeds, or his lunch won’t stay down and I am right back to wanting to go on vacation with a bottle of Jack Daniels. It’s like I live on a roller coaster of emotions and SPD is driving us. In a 24 hour period I will go from being so incredibly proud he peed in the potty, to feeling confident when we go out because he didn’t have a single melt down over jumping in the garden center puddle, to feeling over whelmed by the ball of energy making a huge mess in my living room, to feeling frustrated by the hour long head banging, throwing up temper tantrum at bed time. All of it leaves me exhausted, weary, and ready to run away.

I wasn’t expecting the feeling of being numb when his doctor told me she firmly believes he is autistic. Or the feeling like someone shoved a hot knife in my chest when I heard my husband say, “Our son is autistic” when we were looking for tablets for him. I didn’t expect the floods of anger over my friends facebook page about her nearly 3 year old riding a horse, talking up a storm or being potty trained. I’d kill just to have my kid ride a trike or be able to have a conversation with him. I didn’t plan on the feeling of sadness when I think about the future. And I had no idea the worries that would creep up in the middle of the night, all of those unknowns and “what ifs” you can’t help but think about. Will he be able to do ok in school? Will he have friends? Will he date a girl and get married one day? Will he be happy? Will his dad and I be able to handle all of this? These are things you don’t sign up for, they just land on you. No one signs up for this. No one PLANS of this. It makes me angry which in turn makes me sad. It’s not like it is anyone’s fault, but man it would be nice to point a finger and yell at someone. To throw a full blown melt down of my own right in the middle of the store, To go crazy on the old lady who tells me to “just spank him”, or to start banging my own head when he does. But I know I can’t do that. I am mom, and mom doesn’t hit annoying old women.

I also didn’t expect the flip side. The complete joy I would have over things like him saying “Please” without throwing a temper tantrum. The pride I would have when he learned how to jump, catch a ball, or sit down and eat like a boy, not a dog. I didn’t expect to meet some amazing people along this road, but it is a welcoming community that makes you feel at home. I didn’t realize the hope I’d have for things to come, knowing that he starts preschool in the fall and I know he is going to do great. I had no idea that I would laugh so much at the quirky little things he does. I didn’t realize you could throw a celebration over things that other kids do every day, or that I’d be calling my husband in tears the first time he told me he loves me with words. I didn’t know the mama bear that was in me, who shows her head when I feel like he needs fighting for or protection. And I didn’t know I could love a kid this much.

I guess all of that to say, I don’t really know where my emotions are. Most days I can paste on a smile, act like all this isn’t getting to me, but you know what, it does. It isn’t all ok. I am not all good. Am I happy? Yes. Would I change my life? No. But I don’t have to love every moment of this process. I don’t enjoy the constant therapy appointments, the endless doctors’ appointments or the sleepless nights. I know it will all be worth it; my son is going to succeed, grow, and turn into a fine young man, but in the mean time I will enjoy my wine. And maybe at some point I will turn into one of those strong moms I dream of being like. But until then, I am learning to admit that I am a big emotional mess and that is ok too, the world needs us crazy moms just as much as it needs the strong moms.

And that is the honest truth.

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About Heather

My name is Heather. Wife to Naythan. Mommy to my two great kids, Drew and Alynn. A multi-tasking extraordinaire, fledgling photographer, and full time student in the beautiful Northwest. I am a lover of fine wine, a good book, and anything that is pink. I learning how to navigate this world of SPD, PDD-POS and IEPs without losing my sanity, but it's a work in progress. You can watch me try to a figure it all over on my blog http://www.learning-2-laugh.blogspot.com or over on twitter as Mrsheatherl_08.

    Comments

  • Deenie


    I love the rawness and honesty here. I know I have felt all these things myself and I would suspect so has every single mom who has ever been told their child is not developing “normally”.

  • Lizbeth


    I’m right there with you sometimes…today being no exception. There are days when this is HARD. Really hard. And to say it was all pixie dust and fairies would be wrong. Notice I have not post today? That’s because I’ve got nothing, I’m lucky to be hanging on and I just don’t have it in me. Now don’t get me wrong—I have supports and I’ll survive but not with out a little help. Hugs lady, hugs.

  • Lisa


    Can I be honest? I have been in your shoes, felt the same emotions, and have the same hope. Like Deenie above said, many of us are right there with you. Know you’re not alone, and many of us cycle through those emotions regularly.. ((hugs))

  • Tonya


    Very honest post! I think all of us ride this same coaster of emotions with you and sometimes we just want to scream to get off! To stand still for just a moment! yet it is so true that with out it we would never appreciate the small victories that we get to celebrate with our amazing kiddos! I will say I think the beginning of this process is the hardest! And that is not to say everything turns into sprinkles and rainbows after a while but I think once you adjust to this new life for a bit something settles in your spirit! Hang in there momma!

  • Lisa


    You already ARE one of those strong moms you aspire to be. You just don’t know it yet. <3

  • Diane


    It never ends on some days, does it? It just comes in waves and you have trouble keeping up with everything.

    I so “get” this post. There are days that I get so frustrated at the smallest thing – and it takes a lot to step back and remember what it used to be. Sometimes it works, sometimes it doesn’t.

  • Carmen


    I feel like hitting the annoying old women in the library almost every visit, if that makes you feel any better! My SPD/Asperger’s 6-yr-old daughter wears me out with her anger and aggression, but I also see a sweet side to her that so many miss due to her anxiety. I’ve learned over the past 3 years to give it back to people. I don’t apologize for her meltdowns anymore, I don’t smile at people in public in the false hope that they’ll be understanding or nice…I just move through my world with blinders on and am in a constant process of accepting this diagnosis we have been dealt. Screw the others if they don’t get it! I have a kid to raise, I’m exhausted, but I’m a good person and my daughter deserves what ANY child deserves…love, patience, understanding. Karma’s a bitch, so if someone judges me or my child, well, “karma’s a bitch”, I tell myself! Or I say, “God sees everything” and I let things go. Hang in there, Tough Mama!

  • Jacque


    I am in that rollercoaster car sitting right next to you Mama! You have just wrote everything I wish I could of!

    Just wanted to let you know that you are not alone and please feel free to email any time if you would like. (I’m not sure where you are but I’m in the PNW also!) :) Hugs and a glass of wine to ya! :)

  • Ellie


    I think you’re on your way to being one of those mums right now. I personally appreciate your honestly . Having a little guy with ‘complex needs’ (ha! What exactly does that mean?) I found one of the hardest things was to be honest about the negative emotions as well as the positive ones, and to be able to say ‘this is hard!’ thank you for writing this post because I feel that way too sometimes and still sometimes feel guilty for feeling that way.

  • Heather


    Thank You ladies for all your kind words! It is nice to know that I am not alone in all of this because some days it feels very lonely.

  • amu


    So fortunate to have found your blog and read the responses of others. Our family has been on this rollercoaster since February 2012 when the pediatrician noticed that my daughter seems in her own world. We had an evaluation done and no diagnosis yet qualify for services from early intervention in PA. Soon my daughter will be turning 3 and these services will end but we have started the process for more OT at a private center. Many that come in and out of our home mention SPD..or PPD. Next thing it will be PMS. My husband and J feel alone and do not have the familial support. My. Rain is constantly working on this process and his for his work. Thank you for making me feel not so crazy and alone.

  • Chrissy


    You are one of those Moms I aspire to be!!! Your post hit home! Its nice to know that we are not alone in our feelings, and I agree 100% that we are given the gift of learning to really appreciate the little things!!

  • Bridget


    Somehow you managed to capture me and my inner most thoughts? What magic is this? Oh right, I am not alone and my journey with SPD which is just starting is one travelled by other moms and dads. Thank you for paving the way!

  • CircleTimeMommy


    You are a strong mom, and you will get even stronger. Strong moms feel all of those emotions, too. We are all on the roller coaster, and it’s okay to feel the full gamut of emotions that brings. Thanks for being strong enough to be honest! You are not alone.

  • Crafty Mom


    It’s a journey, and you’re right, we don’t have to love every minute of it. I always appreciate raw, honest, emotion over sugarcoated lies and fantasy. Remember, when you read those other blogs, even rocks crumble and even “strong women” cry and get weary. These kids teach us lessons we would otherwise never learn. Among other things, like you said, my daughter has revealed my inner Mama Bear. Hugs, honey. Enjoy your wine! :)

  • Megan


    After a few sentences in my first thought was you are one of those warrior moms :) takes a bit to grow the tough skin you will need and to have those tools built up in your toolbox and to constantly wear your sensory goggles. Awesome job rolling your sleeves up and diving in head first to be that momma bear mother warrior for your kiddo ;) I had one of those moments at the library a few weeks ago with my son. He had a meltdown and bolted being 8 months pregnant I could not physically keep up after I finally did I am wresteling to keep him safe. After scratches and bruises on my leg I got a good deep pressure hold on him while I was doing the Jesus cry and all I got were some good stares. People don’t ” get it” :( recently re read a quote I read in my sons quote book. Anything worth having should not be easy because then you would take it for granted. The cool thing about our sub club of parenthood is we don’t take anything for granted every small thing is an achievement for our families ;)

  • Patty


    Welcome to the roller coaster that is special needs parenting. This post you wrote? I have felt every single thing you describe so eloquently. Your post is so authentic and heartfelt and somehow very beautiful.

    All I can do is reiterate what others have already said: you are not alone. There is a whole legion of us parents who get what you’re going through. Lean on us if you can.

    And also, you are plenty strong, sister! You are doing it, despite all the struggles, despite the anger and anguish (which are all natural feelings, by the way. We all go through them at different times!)

    Thank you for your post.

  • Jess


    Thanks for this great post. It was very honest and I can certainly relate. I laughed out loud when I read “I am mom, and mom doesn’t hit annoying old women.” It sure can be tempting though! Keep celebrating those little milestones and moments.

  • Kelly Hughes


    hi honey hope the fact that mostly every parent that read your your true and honest take on life as a carer. its so emotional to put into words how we feel and what our minds stilled to process ourselves why is this so challenging and am i failing until you read somethin like your honest take on our every day life most parents will. be having a sigh of relief that all they think and feel and are experience is normal and to remind us we need to battle on and protect our children to that they are giving every given opportunity to excel and tm gdjp them and guide them not only as a child but to an independent adult some day. bless you i wish you and your family all the power and strength you need. Kelly x

  • beans_mom_1


    Heather! Thank you so much for sharing. It takes courage to share your story! We are all in this together with you.

    Celebrate those milestones. They are so precious especially when you know what it took just to get there :)

    I cannot wait to read some of your ‘triumph’ stories in the future! They will come, I can assure you! Be strong! You are an amazing mom!!

  • Heather


    I am blown away by the love and responses I have gotten on this! Thank you all for your support. And I am glad that I could capture feelings and emotions that we all feel.

    And thank you for saying I am a strong mom, because I sure don’t feel like it! I love this community and I am so blessed to be apart of it! <3

  • Forgotten


    You *are* a strong mama. You are working your ass off daily to make sure your children get everything they need. You are going to those appointments and not turning a blind eye and drowning in denial. You are taking your child out in public even after the ignorant old lady tells you to spank him because you know she’s wrong and you are doing what’s right. You *are* that strong mama bear who will fight to the death for your babies. Welcome to the world of the Warrior Mamas, with your child’s first meltdown you were initiated. It may feel like constant hazing around here to be in this club but I promise that eventually you’ll see it for the strength building exercises that your children are helping you out with. ;)

    You’ve got this, little mama, and we’ve all got your back. Hang in there. Email when you need to. Call when you need to (don’t be afraid to ask someone if you can call and rant in their ear. I’ve had several tweeps volunteer for exactly that and they’ve saved my sanity more than once.).

    Just keep going. You’re a strong mama. You’ve got this. :)

  • ReinventingMommy


    And I love your honesty. We’re about 16 months past receiving my son’s autism diagnosis, and I can say that I still feel a roller-coaster of emotions, too. Like you, I wouldn’t change my life and I love my son with every ounce of my energy, but I don’t enjoy all steps in the process. Also like you, I’ve got a newfound appreciation for the little victories – like how my nearly 3.5 year old just put a toy phone up to his ear yesterday FOR THE FIRST TIME.

    My son’s favorite song is Bob Marley’s “One Love”. I think it’s a good analogy for all of us autism mamas. We’re in this together. We’re climbing this mountain with you. You are absolutely never alone in this journey, because it is truly “One Love” with all of us mamas.

    And – for what it’s worth – you have a real gift for writing. Don’t underestimate that gift!

  • Jenny from the Block


    I feel so much of what you feel. I feel like I am trying so hard to be ok, to accept, but I am angry and sad sometimes, too. It is true that I get super excited about something little, like my boy saying zoom. But then I remember he is almost 2 and basically dos not talk, and then I am sad again. I also see other moms and then I feel guilty I have not the same grace they do the special needs. I cannot stand all the appointments. I should be grateful, though. I guess at the end of the day, all I can be is me, good and bad. Thank you for sharing.

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