"From the rising of the sun to the place where it sets, the name of the Lord is to be praised." Psalm 113:3

Friday, December 6, 2013

What I Wish I'd Known...


Sensory Processing Disorder is a tricky, tricky thing.  We have lived with it in our home now for almost eleven years.  While I am by no means an expert (as evidenced almost-daily in this house), I have been around the block enough now to know that there are many things I WISH I had known--or at least been warned about--when we were just starting out on this journey.  It's my hope that I can be that voice in the back of your head (or one of them) that can offer you some words that can help, or comfort, or, more likely commiserate...

1.  This is NOT your fault.  Really.  Or, truthfully, maybe it is.  No one knows.  And so that means that NOWHERE did you mess up enough to knowingly make your child have these issues.  Yes, I ate red dye while I was pregnant.  Maybe you drank a glass of wine before you knew you were.  There was always that crazy sister of your dad's that everyone talked about, right?

It doesn't matter.  As they say in Kindergarten, "you get what you get and you don't throw a fit".  This is the reality, and SPD is a part of it.  Stop worrying about what you might have, maybe, possibly, done wrong somewhere in the recent or distant past.  It's not worth it, and it will take up extra energy that you need to use convincing yourself of number two and number three.

2.  You are NOT making this up.  I know, I know.  If your child is anything like mine, you may have three days in a row of sanity that make you doubt yourself.  Did you really see what you thought you saw?  Maybe you were over-reacting.  Maybe it was just a bad day.  After all, your child is fine for everyone else, right?

I really think that self-doubt should be a trademark for SPD parents.  One of the hallmarks of SPD, after all, is the unpredictability of it all.  We do have good days and bad days with our kiddos.  In the past, the good days made me doubt that there was really a problem.  Now, the good days just make me wish for more good days in a row.

Stop doubting yourself.  Because, ...

3.  You are NOT crazy.  Oh, Momma, I've been there.  I've been in a doctor's office with a screaming 2 year-old, trying to convince the doctor that this screaming tantrum is not like everyone else's two year-old screaming tantrum.  I've been looked at like DCFS is on speed dial while I've had to restrain my four year-old at the park.  I've heard those conversations between friends while they didn't know I could hear.  (Or maybe that was just the happy people that live in my mind.  Maybe I really AM crazy!)

No, joking aside.  You are not crazy.  You are a brave, strong, fierce Momma lion, and you fight for someone to listen to you and to help your child and your family.  People will think you are nuts.

I promise you that you are not.

4.  Some days are going to be really, really, amazingly hard.  With a capital, shout-it-out-to-the-world, H.  Raising my ten year-old is hands-down, the hardest thing I've ever done.  She exhausts me, wears me down, makes me so weary that I can't make another decision to save my life.  So much of my brain power is filled with "what if" scenarios, or ways to make transitions easier for her, or worrying about when the next shoe is going to drop.

It's so very tiring.  It makes me want to quit.  In fact, I have quit, many, many times.

But we still have to get up the next day.  And we do, because...

5.  Some days aren't.  When my Firefly is on her game, she is a light.  She is funny, caring, and generous.  Her spirit is so big that her body can't contain it.  She has so much to share and talk about and love.  And it builds me back up.  And sometimes we have a few of those days in a row, and it's all worth it.  And the no-good, horrible, very bad days fade away.

6.  Not everyone will get it.  In fact, very few will.  Find someone who does.  Break away for dinner, or for a drink, or chocolate.  Make sure you have someone who you can call and cry to when you have locked yourself into your closet and just. can't. take. it. anymore.

It will help so very much.  I promise.

And if you haven't found your person yet, call me.

We can cry in our closets together.  I have been there, trust me.

(And thank you ever so much, Liz and Chrissy!)

7.  You will lose some friends.  Mostly because of number six.  When people don't get it, they tend to not want to get it.  They think that you are making things up or just a bad mom (number eight).  Remember, though?  That kind of thinking is not true.

Some people won't understand that their last-minute changes of plans (continually) mean that you finally have to stop making plans with them in order to maintain sanity in your home.

Some people don't want to offer playdates when you can't reciprocate.

Some may think the diet you've put your children on is bizarre.

Some may think it's just too hard to be your friend.

Not everyone thinks that way, Momma.  Hang onto those you find who get it, and stop worrying about the others.  They have been blessed to not have to get it.  Your blessings are coming in another form.

You have enough going on to have to worry about.  Choose your battles, sister.

8.  You will think you are a bad mom.  Maybe you should have picked up on those clues earlier.  Maybe you should have tried X, Y, or Z therapy before.  Maybe you lost it and yelled and screamed like a toddler because you were at the end of your rope.  Maybe you slapped your child.  Did you say things you shouldn't have said?  Did you lock yourself in your closet for that cry a little too long?  Are you a bad mom?

9.  You aren't.  Listen to me--you are human.  You are trying your very best, but sometimes you fail.  It's OK.  You know why?  You get up and try again.  You love your kiddo, even when it is impossible to like them.

You are human--you are not God.  You are not perfect.

It's OK.

10.  Your child was given to you for a reason.  It may be a long, long time before you can see it, but it's there.  God doesn't make mistakes.  He knew you were the perfect Momma for this job, just as He knew your child was the perfect child for you.  It's hard to wrap your mind around, and some days it's hard to acknowledge.

But try to hang onto that.  God doesn't make mistakes.  He knows what He's doing, and our job is just to trust.  But won't it be just wonderful one day to be able to ask Him, "just WHAT were you thinking?!"


Are you a Momma of a kiddo with SPD?  What else would you add to this list?  

29 comments:

  1. I love this. So very much. Thank you!

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    1. Thank you for commenting! This one was a hard one to write, but I thought there were people out there who needed to hear it!

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    2. It's time to pick my son up from school and I'm sitting here laughing and crying. He's deaf with SPD. I can relate to it all.

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    3. I'm glad there is laughter--I think we Mommas spend lots of time taking ourselves too seriously. I hope it helps!

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  2. Thank you! I am still trying to decide if my 11 year old dd has SPD. I know she is Psychomotor & Emotional Overexcitabilities. I always thought I was just a bad mom because none of the other kids I know acted like her. But the more I learn about giftedness, 2e, and SPD are starting to change my mind.

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  3. Thank You so much!!! My 33 mnth son was just diagnosed with spd and after 2 drs telling me "this is just a 2 yr olds behavior, they dont have impulse control yet" l am so happy as weird as that my sound that I didn't give up, I being a first time mom followed my instincts!
    Now for the 2nd step therapies...(only has 3 mnths before he ages out)
    So then what...could u share please what did u do or r doing? Is ur child in general ed classroom Sorry I have a million?s
    But i truly wanted to say thanks!!!!!

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    1. I'm so glad this was helpful to you! I know exactly what you mean about being relieved to have a diagnosis--but overwhelmed, too, right? We have tried all kinds of therapies over the years--just about everything you hear of, really. Right now, my girlie just turned eleven. She is homeschooled and has been since first grade. She has just begun OT again, and sees a counselor and is on a medication. What have I found that helped US the most? Changing her diet--big time. I can't seem to find the strength to go gluten and casein free, but we have removed all dyes and almost all preservatives and that made a huge difference. Counseling and meds also helped. For us, OT, behavioral therapy, chiropractic, DAN doctors--none of those were big successes. Also, finding other mommas who understood is just a huge relief. I'd love to keep in contact with you as you go through this. I'm here anytime, lol!

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    2. Thanks again!! We have a play base assessment end of Feb for preschool... I'm so nervous! His ot doesn't think he will qualify b/c he excels academically but his
      behaviorist thinks he will b/c he cant control his anger.

      If u dont mind me asking why have u decided home schooling?
      I'm going to see if I can start changing his diet... but he's so picky lol
      Its such a blessing to have found ur blog!!!

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    3. Make sure you stand your ground and let them know there is more to school success than academics. We decided to home school for several reasons, not the least of which was the flexibility that it offered our family. My firefly did well in school (it was only k and 1st grade), but she was completely a train wreck when she got home--from being so on edge all day. Homeschooling now gives us the opportunity to make dr. appts and therapy part of our school day, adapt our schedule to what works best for her to be successful, and give ourselves ALL the chance to take a break when we need to.

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  4. Sitting in the dark waiting for my son to fall asleep doubting myself as a parent. Thank you for making my night easier

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    1. Bless you. I'm so glad you found this and that it helped. The doubts are so so very stinky, and I'm so sorry you have to deal with them. Prayers are going out for you. I hope today, at least, was a good day for you.

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  5. So nice to be able to breathe when I read this. I have felt crazy, overprotective, neurotic even. However, visits to the physical therapist and occupational therapists have been so validating. And nothing is more validating than this...

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    1. I am so so glad that this helped you! I prayed that it would be helpful to someone--I know the whole thing is so very isolating sometimes.

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  6. OMG thank you so much for this! Being my little monkey's mom is the hardest thing I have ever done and I taught kindergarten for an entire year in a room with no windows and only 1 door! Potty training alone almost put me in a mental institution! Anyway...thank you again. I don't have that phone call person and my husband isn't really here enough to understand AT ALL so this really, really hit home.

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    1. Hey, Molly! Your kindergarten adventure made me giggle! I'm glad I could help, even just a little. I would love to help be your person--you can always email me during those rough, crying in the closet, times if you need to. Hugs! (childrenfirstei@yahoo.com)

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  7. I am the stepmom to a 7 year old. My husband is a truck driver and barely home. My baby girl's bio mom lost custody of her a year ago due to her drug problem. I am a 21 year old who all of a sudden was a full time mom to a 7 year old. Almost everyone I know had me convinced that it was just because I was so young and couldn't handle it. There were countless times that I would just lose it. One in particular, I had just cleaned the kitchen and Baby Girl had not been listening to anything she'd been told all day. I gave her a drink to go with supper and the first thing she did was drop it in the floor. I went outside on the swing and cried for an hour...She was just diagnosed last week and we are going for her first visit with her therapist tomorrow. I am SOO glad that we finally know how to help her. I felt so helpless! Even though we haven't found out what will help her most yet, we know WHY she does the things she does. Its like the weight of the world has been lifted off my shoulders.

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    1. Bless you for working so hard and taking this on. You are a special lady, and she is so lucky to have you! I am praying for you and that therapy will be helpful--for her and for you. You are most definitely not alone.

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  8. Thank you so much for this. My 3yo daughter was diagnosed four days ago with a spd and I am trying to wrap my head around it all. This is just what I needed to read right now. Especially that last point.....i keep saying that to myself in the difficult moments to get me through. So a very big thank you.

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    1. I am so glad this helped you! It was my prayer when I wrote it. It's so scary, especially at first--but you will make it through. Hugs and prayers for you...

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  9. this might have made me tear up! My four year old daughter has SPD and it's been a long road to her diagnosis. People think I let her " get away" with it. Your words ring so true to me!!!!

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    1. Oh, Stephanie, thank you for your kind words. I hope that mine helped you, and know that I am adding you to the prayer list! I hope the diagnosis helps you to find professionals who are helpful for both of you.

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    1. Amy, welcome again. You aren't alone. Even though it feels like it sometimes.

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  11. Your blog is absolutely amazing, thank you so much. My youngest has just been diagnosed with Sensory Processing Disorder and for the longest time I thought that I had been doing something wrong. After the diagnosis and after I stopped blaming myself for something gone ary in my son, I have accepted the challenge that is my amazing son. We too live in Florida, we are in Southwest Florida and low and behold the one thing that makes him go into sensory overload the most is the beach. Some days are unbearable but other days, like today, are wonderful and I count my blessings on these days when I don't have to breakdown in the bathroom because I can't take it any longer. Thank you thank you thank you for sharing this blog. I will definitely be a regular reader <3 It's wonderful to see a family that has been dealing with SPD for years. It shows me that everything is going to be just fine

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    1. Ha! I'm so tickled to hear that our story gives you strength! Please let me keep reading that when I am having my bathroom moments!! It is going to be OK--we're all going to make it through to the other side--and be so very blessed when we get there. It's just hard sometimes to keep our eyes on the prize! (I think it's because of the tears--or the wine.) Nice to meet you, Brittany!

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  12. Thank you for this post. I have a 9 year old who was just diagnosed. It is nice to hear what others are doing and that I am not alone or crazy. I am trying to figure out how to explain to family and friends when things are bad that isn't just "bad." It is difficult. It breaks my heart that people just assume they are naughty. The first psychologist we went to said she was just being evil. A hard road ahead, but at least we know what is wrong! Thank you for helping make my page easier. I will definitely be a regular reader (especially when I saw your 'Noles post! I am class of '96 living in GA)

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    1. Oh, Marci--it's finally been a good year for our boys, hasn't it? Do you make it to any games? We finally broke down and got some tickets for next year...The explanations are just so tough, aren't they? And I find myself trying to figure out who deserves the long vs. quick explanation. As Firefly gets older, that gets tougher. She has her own opinions now on what she wants the world to know!

      Shame on that psychologist! I'm so sorry you had to go through that! Just what NOT to tell a struggling Momma! What are you all doing now that you have the diagnosis? Any treatment plan? I'd love to hear what's next on the agenda...

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  13. After my 4yr old suspected spd kiddo (in the process of seeing paed, ot and speech therapist for diagnosis) having the biggest meltdown at a family members house and hearing the "spoilt brat" comments...I really needed to read this. Trying to empower myself with knowledge and coping strategies (for me and my son) so that I can hopefully educate the extended family. Thank you for this! I know im not alone and im not mad :)

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    1. Nope, you're just crazy like the rest of us, lol! I've even found myself calling my own SPD kiddo "spoiled". It's such a hard road, sometimes, but I hope it helps to know that you're not alone. Hang in there!

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