continuing to process this process

I feel so torn about writing so publicly about this process with Jordan and having him evaluated for Sensory Processing Disorder and/or other similar “whatevers.”  I don’t want him to look back on this when he’s older and feel like I exposed him.  But, I also know my kid, and I know that there’s a 99% chance he won’t mind, and would be happy to help one person, even if that is just mom.  So, for now, I write.  Until I don’t feel comfortable with how he would feel about it.

I have been reading books and articles and blogs like a crazy person lately.  On one hand, I feel like I am empowering myself with knowledge and perspective.  On the other, I think I’m just getting some relief from the fact that I may have some answers.  Every time I read a new “symptom” that has been a funny little quirk or annoying habit Jordan has exhibited over the past few years that we have passed off as “just Jordan” I go through a range of emotions.  I feel intrigued that some simple things may actually be involved in a bigger picture.   I know I’ve made light of the fact that I hoped Jordan would be able to “wipe his own butt” by the time he reached college, but those types of situations are actually a common part of this life.  I feel like an ass for being so cynical about something that he truly does just struggle with.  But, at the same time, I am still just a smart-ass mom that is sick of helping clean up after challenging trips to the toilet.  This is just such new territory to me.  As much as I want to be sensitive, I know I also still have to help him learn every thing in life that every other person learns, even if it is a little more challenging than it might be for the average babe.

Jim and I are both taken aback by how much new patience and even grace we feel in navigating through life with Jordan lately.  We both had a sense of it even before we had a name to put to the struggles that were going on.  Now that we are seeing that many of those struggles aren’t just because Jordan is being stubborn or spoiled or purposefully difficult, but are actually a part of a bigger picture, we are both amazingly calmer and more in tune with his needs and how to not only teach him, but find a way to communicate with him in a way that connects the dots for him.  If you don’t know anything about SPD, this will probably sound weird to you.  And, let’s face it, I am two weeks into knowing anything about it, so I could be so freaking wrong right now it’s ridiculous.  Either way, I just know we are feeling a new level of patience, which for us, was mandatory!

Both of our kids are so supported and loved by our family.  Saturday was Elle’s birthday and the child spent a solid hour or more on the phone with different relatives calling to wish her a happy birthday- and that didn’t even include the family that we spent the day with.  Jim and I kept remarking about how supported our kids are and how they will never lack for love and nurturing.  That is such a relief for us as we think of both of them and what hard work growing up in this generation really is.

We have friends who live across the state from us, and have a child with SPD.  They were so gracious to offer some of what they have experienced with their child to us.  As I was reading through it tonight, as I have been more often than not lately, I was in tears.  I swear I could have been reading about many of my days with Jordan as I looked over this information about their experience.  I am so overwhelmed with gratitude that we have friends and family that are supportive to, not only us, but more importantly, Jordan.  It was so encouraging to read through the every day struggles that all parents face, but even more so when you’re experiencing more than just the average bumps in the road.  Knowing that parents I have deeply admired as extraordinary are facing some of the same hurdles and even impatient and less than perfect attitudes that I *occasionally* (um-hmmm) do is just so encouraging.

I guess what I’m saying here is, we are moving forward quite comfortably.  Every day is full of a new challenge but also more encouragement.  I am a happy momma.

 

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17 thoughts on “continuing to process this process

  1. i didn’t comment on your last blog, and meant to. i am loving this raw, honest new you. i find it amazing that you can share your struggles, especially when it comes to your child. it is a very private, sensitive thing, and i admire you for it. especially if it is helping you walk through this process. my sister’s boy has the same thing as jordan and i remember when he was little and the major struggles she went through and how hard it was for her – the bad thing is she kept it all inside and would not share with anyone. it was hard to watch. benjamin is doing amazing – and the thing is, he is one of the smartest kids. incredibly smart and talented. very quiet and to himself though. but my sister worked hard with him and took him to a lot of therapy – physical and speech, etc. and like i said he is doing amazing. and i can imagine that there is so much more research out there on this disorder than there was when he was little. he is 15 now. they tried to tell her that he was mildly autistic as well. but that was not the case. so glad to hear that you and jim have found a new grace to walk through this and i hope and pray that you continue to. love you my friend:)

    • Thank you, my friend. First of all, I can’t believe your sister’s kids are already that old! Holy crap how does time move so quickly!?! Secondly, I appreciate your encouragement. I love you too!
      k

  2. I know this journey very well, and you are writing about it with grace and love.
    I encourage you to come check out the SPD Blogger Network. We’re a community of parents writing about our kids and their sensory issues. We write from the heart and with love. It’s an incredibly supportive community. Come read what other parents are writing and you’ll know you aren’t alone. And then, when you want, share your story with us there too. We’re at http://www.spdbloggernetwork.com.
    I wish you luck and love as you head on this path.
    Alysia

  3. I have never read your blog before, but found it thanks to a post from the SPD Foundation on Facebook.

    I just read your two most recent posts and they left me in tears because they hit so close to home. I have a nearly 4 yo son and we are also in the process of having him tested for SPD. I have felt for quite some time that something is just not quite right with him and have struggled to get anyone to listen to me. My husband refuses to believe there is a problem and sees it all as a behavioral and discipline issue.

    My son is a bright, affectionate, beautiful boy! I only hope I can live up to the challenge we may have ahead of us.

    I look forward to sharing the journey with you (and exploring the rest of your blog posts)! Thank you!

    • I’m so glad you connected with my posts. This is certainly no easy journey, but having friends to share it with and learn from/with makes it so much better! Thank you for commenting, I look forward to getting to know you and hearing about your boy.

      My husband was also very skeptical about this process in the beginning and started out quite adamant against even looking into evaluations/testing. The more I read and slowly told him about the little things that have often “bugged” us about Jordan, the more receptive he became. As we talked about what therapy could mean for Jordan, I think he started opening up to it more and more without even realizing it. I say that in order to tell you don’t be discouraged by the resistance at first. I think it’s part of the process for most of us!

      I’m so looking forward to getting to know you more!
      ~k

      • Taking Charlie in for an OT screening today. It is a “free” 15 min screening to determine if a full evaluation is necessary (which I fully expect they will recommend).

        My husband is TOTALLY against it. He told me I have been reading too much and I am imagining all these behaviors . He compared me to my mom (who is a complete hypochondriac) which is pretty much the WORST insult he could hurl at me. Painful.

        Hoping for some positive words today. I feel like I am fighting a battle and I am my own army.

      • I’m so sorry, Amy. It is never easy being the only one who is fighting! I have waited as long as I have because of the same thing- not wanting the opposition. I’m fortunate mine is finally on board, but we still have our days. Days when I’m not being sensitive but coddling and just setting him up to be spoiled forever.
        The most important thing is that you’re following your gut. They call it “MOTHER’S intuition” for a reason. I’m convinced no one knows a person like a mom that’s in tune with their kid.
        I’ll be sending good thoughts and hope to you today as you start this process. Big hugs to you and your boy today.

  4. I read your post this afternoon and know exactly where you are coming from. My daughter (now 11) was diagnosed with SPD and receptive communication disorder at the age of 5 or 6. I always felt that her acting out was caused by something that I was doing wrogn. Maybe she hated me, or maybe she just was a real brat. I have learned so much by exploring the internet and the lightbulb goes off. She could not and still cannot handle going out to eat. The noises from little ladys cackling and tv’s blaring, radios booming inside a small space just drove her nuts. (and me too..because I was trying to find out what was bothering her). In many of my researches, I found that the trampoline helped her, along with some lavender hand cream on her wrists.

    I have learned in her elementary years that I needed to be her advocate and I was her only advocate. Reteaching teachers..year after year. They never seem to read the file from the year before But, she is learning how to advocate for herself. She knows that if her feet are on the ground in school, it helps her. She knows that jumping on the trampoline works on test days. But, teachers don’t always understand this. Outside of school it is sometimes hard to get friends and family to understand why she may zone out in a room full of people. But I understand and will never judge her or another child ever again.

    Parenting and advocacy go hand and hand. Don’t be afraid — speak up for your child and all you do to learn about SPD can only help. Things get better with a good OT and a great Mom and Dad…good luck to you both!

    • Cathy, THANK YOU so much for sharing this with me. We are so grateful to have a good teacher and school psychologist to start this journey with, but I know we will probably not always be so fortunate. I appreciate your experience and wisdom!

      • Feel free to write back at anytime. We have come along way but not without tears from both she and I. I remember leaving treacher meetings just overwhelmed. Lots of luck to you.

  5. As usual, you continue to prove my point that you and your husband are awesome parents. I am sure that your son will be amazing and wonderful.

  6. My daughter has been diagnosed for three years and I still have many days when I think I am such a crappy mom for losing patience with her. Figuring out what is sensory and what is behavior is hard and often I guess wrong. Knowing the reason why we have to do something like “wiping butts” helps us understand why we do it but still doesn’t make the task any easier. Sounds like you are doing great…try not to be too hard on you.

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