Monday, March 24, 2014

I'm Not Alone, and Neither Are You

I know it sounds crazy, but I have no great urge to blog when things are going well with Bear. I know, I know...you'd all love to hear the good stories, the stories that give you hope that things will get better for you and your kids. Here's the thing, though. My blog is where I come to scream and to cry, to vent and to laugh. It's where I get everything off my chest so that I can keep going, because some days I'm not sure I can.

Today was one of those days. Things with Bear have been getting rougher and rougher for months, and I've thought of sitting down and writing a number of times, but every time I thought about it, it just seemed like one more thing I had to do. And let's face it, as special needs parents, there are a lot of things we have to do. Rarely do we get time to do the things we actually want to do.

Today has been so bad, however (and for the record, it's only 10:00 a.m.), that I turned straight to my blog. Here's how my morning went, in a nutshell. Bear's anxiety was so bad that I had to pin him down and dress him, after which TheODDDad had to carry him out to the van. Once at school, it took two EAs to peel his arms from around my legs so I could leave. I literally ran out of the school sobbing and then sat in the parking lot because I was crying too hard to drive. Then I drove home to pick up Stitch, who was at home with Daddy, and took him to daycare where my normally daycare-loving child proceeded to wrap his arms around my neck and cry when I tried to hand him over. By the time I got home, I was an emotional wreck.

My plan when I sat down to write had been to scream and cry and vent. I really didn't anticipate any laughing. Not today. But here's what happened instead. I started reading the comments that readers have left over the past few months and, as I did, I felt my shoulders begin to straighten, my head start to clear, and my spirits begin to lift. I was reminded that I'm not alone in this journey and that there are people out there who know exactly what I'm going through. They understand the euphoria when things are going well and the devastation...the utter devastation...when things go horribly wrong.

Because your comments helped me so much, I thought I would share some of them. After all, if they lifted me up, they might do the same thing for you. So here it goes...

I am slowly coming to grips with the part about being a parent of a child with mental illness... and it’s not easy. Helps to know there are others out there, too.

As much as I never wish this on anyone else, I am comforted feeling I am not alone in this struggle. Over time certain behaviors may lessen, but we are finding new ones emerge. My son is 13 (ADHD, Anxiety, Depression, ODD). He no longer melts down for 2 hours at a time, but his school and social issues persist. He is failing most of his subjects and talks about dropping out of school. He is an extremely bright kid and has endless potential. We are just hoping we can find a way to tap into it. I embrace all of you facing this tremendous life-altering experience of parenting a child with ADHD. I wish all of us and especially our beloved children peace and happiness.
 
Everything I have read so far is MY life. I am actually on antidepressants now because of the constant struggles and every waking minute battles with my ADHD/ODD/OCD son. It feels wonderful to know that I am not alone and that I am not imagining that my life is a constant battle.
 
I feel as if I am living a nightmare with my child. She is severely ADHD, with anxiety and mild ODD. I feel like the worst parent at times and am so frustrated by those other parents who judge my child and ask me "What's wrong with her?"
 
My son was diagnosed ADHD/ODD when he was 5 and let me tell you, everything you wrote under The ODD Child tab hit home. He is now 14 and doing better at using his tools that he learned from counselling and us to take control and not let it control him.
 
My son has ADHD and ODD as well, and I REALLY wish I had found something like these blogs and websites when my son was first diagnosed!! I was alone in a new town with family over an hour away, so I had no help and no support system, which amplified the struggle, and diminished my "taking care of me" time. Anyway, I realize I am not alone, and am NOT A BAD parent, but at that time, I wasn't so sure.... My son is 11 now, and things are better, but we are still not without our struggles! I really HAVE to keep reminding myself that he doesn't do this on purpose and it's not personal!! Thank you so much for that reminder!
 
My son, who is 6 with ADHD and ODD just like yours, has had some serious regression in the last couple of days. I am home today from work because I simply do not have it in me to go and work with those kids at school. They deserve me at my best, and today I am not. I will cry today.... but I will get back up. That is what I do too. Thank you for letting me know I am not alone.
 
I cannot tell you how timely finding your blog is for me. I am you. I am dealing with an adhd/odd five year old boy and the people who I need their support the most, they have repeatedly told me.... today even....after a meltdown of his (and mine... from sheer exhaustion of emotional resources) that I am doing everything wrong, and that I need to be better. I am a teacher. I know how to deal with a class of 23 unruly kindergarteners.... how am I failing so deeply with my own son?! Today has been a tough day. Most days are. But despite, I am the positive shiny person that everyone but my family seems to see.
 
I often think about you and what a really great, kind, funny, intelligent person you are and that for me is proof that you get what you get in terms of kids. You don't get to choose their temperament. I often beat myself up about having created an 'out of control kid' - I mean my husband and I are pretty strong personalities and we could definitely work on improving our own emotional regulation at times - but I know that isn't the whole story. My daughter was pretty unique from the day she was born: long overdue, in distress and screaming bloody murder. The screaming didn't stop for 5 months. The midwives called her 'cross'. Her grandparents said she definitely knew her own mind. She was 'the girl with the curl'. I read every book and tried every approach we could find but we just couldn't seem to help her. It was tearing our family apart. Then I read your post about ODD and thought 'That sounds just like my daughter but she only ever does that at home. She's an angel at school.' Then early this year it spilled over into school for the first time - a 45 minute meltdown in front of the principal's office - and no one even tried to help. Her very young and inexperienced teacher walked right past us! The next day I went to our pediatrician and shared the story I'd been embarrassed to tell (she'd already been diagnosed with cyclical vomiting and anxiety). I mean, I'm a teacher, I know how to discipline a class of crazy teenage boys, how could I not help my own 5 year old daughter? Long story short, we now see an amazing child psychologist who has made so much progress with her. I like to think that all the hard work we're doing now will pay off later.
 
Last, but not least, is this one. In fact, I think this might be one of my favourite comments ever. From judgemental super-mom and special education teacher to mom of a “naughty,” and all with a sense of humour.
 
I think I just found my new best friend, although you don't even know it yet :) ! I have just spent a couple of hours reading through some of your posts. I can not tell you how awestruck I am about stumbling upon my own thoughts and life written with in the pages of your blog! God is GOOD! I AM NOT ALONE! But my story is a little unique because I have literally lived the life of the “I KNOW I'm a good Mom. Just look at my kids, well behaved...always, great students, kind, popular, EASY.” I was the Parent/Teacher organization president. I was the school board president. I was the mom muttering in my head about the "moms of the naughties." I knew if you would just give me a chance with your kid, I could get him in line, after all look at my kids and I was a special education teacher. Our friends told us our kids were not "normal" and that we had NO idea how hard parenting could be. We didn't believe them, we thought that you just had to be clear with your expectations and consistent with your consequences and pray for the Lord's guidance, and all would be so easy for you too. Honestly, this I exactly how I thought! HAHAHAHAHAHAHA! And then, 16 years later, came BEN! Our beautiful blond haired, bright eyed ball of fire! God is FUNNY! Our friends are morbidly satisfied! NOW you know, they say. AND THEY ARE RIGHT! Ben is 7 1/2 and in the second grade and is every bit as ADHD and ODD as Bear. Here we are back at the same school, with some of the same teachers, who knew us as the "other parents" now suddenly on the side of the "naughties". Now when we walk into school the staff looks at us with their jaws on the floor, shaking their heads in disbelief. We have been through more meds, counseling sessions, neurofeedback...that I feel like an expert with all the knowledge and science on these conditions but with little know how on how to REALLY HELP MY SON! I know the judgement that comes from the bystanders because I was one of them! I know how fun and easy parenting can be but I also live how lonely, exhausting and overwhelming it can be. THANK YOU for your honest feelings and your love for Bear. It is not easy being a parent of an ODD child but how frustrating it is for our boys! I can not even imagine the pain that goes through their little brains when they are asked and expected to do something they are completely not wired for and then have adults, like the former me, totally not get it! I could go on forever but I'll stop now, but just know you have one more mom who "gets" you, and is walking a similar journey. ONE DAY AT A TIME!

As one commenter wrote, as much as I would never wish this on anyone, I am comforted by the knowledge that I'm not alone in this struggle. I am not alone, and neither are you, and for that I will be eternally grateful.

Update: I received an email from Bear's EA telling me that he's having a great morning. In fact, he started talking to her about attending college and his uncertainty about what he would study. Life as a special-needs parent is never dull!





11 comments:

  1. A sorority of mommies with spectacularly badly behaved kids -- of course your super special muffin shouldn't be forced to get to school on time, that's cruel! He has ODD! Mommy has totally not spend years reinforcing bad behavior by letting him be late or skip a million days of school!

    Of course, it's the schools fault the kid is failing -- a kid never fails because they're stupid or can't be bothered to study! Or the failing kid isn't nearly as bright as mommy says he is!!

    ODD is totally a real disease. Not years upon years of bowing down to Bear who didn't have to go to school because if he threw a fit mommy would let him stay home! A kid with no friends isn't a jerk, he's bullied (it couldn't possibly be that his classmates realized he's an over entitled brat prone his say fits and sensibly avoid him!).

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  2. Identifying ADHD and ODD was not available in the 80s when I was raising kids. I think it would have helped because our oldest certainly fits some of the patterns you've mentioned here. It is so great that you have this blog to not only vent, cry, and laugh, but to share your experiences and hear from other parents. It's always good to know that we are not alone.

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  3. Thank you so very much for your transparency and sharing your struggles. After a 30 min meltdown about. Writing capital letters with my ADHD&ODD child just diagnosed this year I felt angry, tired, helpless. I searched and found your blog and it us such a blessing to me. Thank you thank you! Only one question how can I now follow your blog? I so need this:)

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  4. To the first commenter - You have no idea what you are on about. Do you have a kid with Special Needs? If the answer is no, then go away. Your words serve only to belittle and demean those of us who walk this road every waking moment. We need less than none of that BS. We struggle enough, thank you very much, without your mistaken judgement of our parenting skills, and the habits of our children.

    To the Blog Author - You are a super hero. If you walk the same road I do, you are all superheros. Life with a special needs kid is hard. Impossible somedays. It gives me great comfort to know that I am not alone. The daily struggles will wear you down, but this community of parents who understand will build you back up.

    Thank you for sharing yourself. It is a comfort to all of us to know that we are not, as we so often feel, alone in this endless struggle.

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  5. I am so happy to have come across this blog! I needed to find this! I'm nervously waiting for an appointment coming up to get my soon to be 6 year old daughter in for an evaluation to hopefully get some answers! Thank you so much for sharing your stories, and your feelings.

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  6. Hi. It has taken me 3 long years to admit that my son, age 8 had ODD. I called it everything but...However, I can say it now. My son has ODD. I'm okay with that now. It has been a roller coaster ride to say the least. I read your blog and I want to commend you on what a great mom you are. Truly. Wanted to share with you a program that I started one year ago. It is the only program that worked, and is unique in it subtleties...It is cause, "Transforming the Difficult Child, the Nurtured Heart approach", by Howard Glasser. Even if you decide not to use his approach, his insights to the odd/challenging child is amazing...He was one. So there you go. Keep up the inspirational work!

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  7. Hi Laura -
    Thank you for sharing your journey and positive insights! Here is some more hope for a positive outcome.... your son's condition could be medically treatable. In PANS (Pediatric Acute-onset Neuropsychiatric Syndrome), and PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus), the body’s immune system mounts an attack against the brain, recognizing it as an invader to be destroyed. The symptoms seen with PANS/PANDAS are numerous and can include tics, severe anxiety, compulsions and obsessions, sensory abnormalities, unexplainable rage and fight or flight behaviors, personality changes, defiance, major depression, ADHD, deterioration in handwriting or math skills, age-inappropriate behaviors, urinary frequency and intense fears. The effects on the child and family are devastating, and sadly, many practitioners are not knowledgeable about the disorders.
    Check out www.strepmonster.com and www.pandasnetwork.org for more info.
    We finally had my son tested and he is on the road to recovery! At first doctors said ADHD, sensory processing disorder, and needed strict parenting - ha!

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  8. Thank you for your posts. We currently only have an ADHD diagnosis for our 7-year old son, but are finding more consistently anger and aggression issues. Did you have an ODD diagnosis from the beginning of your journey? Or did it pop up for your son later?

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  9. I just started my blog in May. I am a mom of 6, and my oldest 2 have ODD among other things, and I just had the courage to make 2 posts that refer to their behaviors. I admire you being able to post so honestly about it. I hope you continue to post to allow people who have been reading your blog to read about your struggle. I think it helps others let us know we aren't crazy or alone.
    www.6timesthelove.com

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  10. I have just started reading your blog and it does help to know I am not alone, but the struggle is still there. I have a 7 year old son with ADHD and an 8 year old daughter with ODD along with being a single mother. I love my children and would do anything for them, but there are points where I am at a loss. My daughter has all the professional help available, but I still have to endure the slaps, punches, kicks, bites. I feel like a punching bag sometimes. She wants to die, she tries running away. Her previous school was suspending her almost every other day because they didn't want to deal with her. It breaks my heart because she is the sweetest, caring child.i get to a point of feeling such a sense of loss. One of my friends says I need to be stricter with discipline and I'm like you don't get it.

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