The two ton, rainbow, unicorn, sparkly elephant in the room.

I keep going back and forth about publishing anything about this.  Torn between my desire for community, for understanding, and wanting to maintain family privacy.  Who knows if I will actually hit that button when I finish, maybe just writing it out will be enough.

I want to start the reverse of our appointment with the psychologist.  The one where they ask you to explain all of the challenges your kids faces, then end with her strengths and what you like best about them.

M is amazing.  She is bright, so bright.  I have shied away from discussing it, knowing that some people are over hearing everyone tell you how smart their kid is.   She is though, smart, gifted smart.  She is compassionate, and caring, and silly.  She loves joking, and snuggles and her little sister.  I love, we love her, dearly.

She is also, in the most basic of terms, a bit of an odd duck.  I can explain to the doctor all of her little quirks and realize what she is doing at 5, started at birth.  She needed a special set of circumstances (upper palate stimulation) to suck on a boob, or a bottle.  She needed us to hold her to help her fall asleep (pressure on the arms, less stimulation, not more), at a minimum holding her hand.  She needed schedules to kept, dinner to happen on time, bed time to never be pushed too late.  She needed time to adjust to new settings.  At the holidays when my nieces could go with the flow and be charming hours past bedtime, she would be a wreck.  I could spot the point where she tipped and always hurry us out before anyone would see it get as bad as I knew it could.  She’s never been a good one for transitions either.  They take time, warnings, understanding.  I’m unsure if it is just her needing to check out when the stimulation gets to be too much, but her focus, isn’t always there.  It manifests itself in fidgets and hyper focus.  Engagement with her matters.  Paying attention is easy if it is new, if she’s mastered it, not so much.  Noise makes a situation, no matter how interesting, hard for her to focus on.

She is lucky.  She has been surrounded by people that love her and care about her (people I am totally showering with all I can afford this year).  At daycare they knew her.  There were challenges, but also accommodations and understanding of who she was.  It was never a big deal.  I knew, even if I didn’t admit it, that school would be a big change, and if my suspicions were true, there would be trouble.

However, the other shoe has dropped, we know now that if we want her to be successful in school, to enjoy it, she needs to get help now.  Not to change her, she is wonderful just the way she is.  To help her understand herself and find her own ways to deal with the realities of school and life. We met with a psychologist last week, an initial meeting predicated by some issues that have come up at school, and her after school program.  The details are not pertinent, so I won’t share.

I think I always knew that this day was coming.  I’ve been on edge about the possibility, vigilant, always questioning her caregivers about her behavior, her comparison to age appropriate behavior.   It is most likely my genetics that bring this one to the table.  I have a family history of ADHD. I have a family history of what would now be considered the autism spectrum.  I wanted so bad to be wrong, but there is relief in being right.

So now, the next step, is her meeting with the psychologist we met last week.  There are evaluations, and testing, and more understanding.  Already, understanding what is possibly going on in her head, has helped us approach her differently.  We are learning how to use her strengths, and where to forgive her when we know she is fighting against her instincts and losing.

I debated not publishing this.  However, I’ve made it through nearly every other parenting struggle with the assistance of my community.  To ignore that it is there with help for me now, would be wrong.  It would be isolating, letting me do the kind of living in my own head that we are trying to help her avoid.

So, give me your special needs blogs.  Give me your ideas.  I don’t want to hear anything about vaccinations, but give me ideas about diet, and ways to make this easier on her.  I doubt we will escape without a diagnosis, but we’re still not sure what it will be.  When we know, I’ll share as much as I can.  For the next person.

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8 Comments

  1. Posted December 18, 2012 at 5:14 pm | Permalink

    Good for you for meeting this head-on, eyes-open, at such an early date. Speaking as a former K-1 teacher, too often all we could do was lay the groundwork & start the conversation – I wish more parents were as aware/proactive as it sounds like you’re being. My advice is to trust your experts, but question them, too. Make sure you understand your options. Remember you know your own kid the very, very best of anybody, and that your psychologist/special ed folks/teachers have a wealth of knowledge & experience with kids with & without similar issues. Like you already said, play to her strengths & help her use them to get through the tough stuff. I have had parents with kids who struggle with behavior/attention/focus issues swear by cutting artificial colors and/or corn syrup from their kids’ diets, but it was very much on a case-by-case basis. And I can’t stress the overtired = more problems deal enough!

    Good luck to you all dealing with this! (Ok, that sounds kinda Pollyannish, but still, my thoughts are with you.)

  2. Posted December 18, 2012 at 6:55 pm | Permalink

    I remember the day of my son’s autism diagnosis (then PDD-NOS, now Asperger’s) so well, because it changed me and my husband completely. There are many, many of us who have been in that evaluation room, with similar fears and hopes that the specialists will see the bright, amazing child we know and love so well.

    This is a journey unlike any other. It will have its moments, good and bad. But it is one filled with people who are amazing and who will teach you so much.

    Some of them even live under your roof. :)

    (Among other things, I write about my son and our family’s journey with Asperger’s on my blog.)

  3. Posted December 18, 2012 at 8:34 pm | Permalink

    The most important thing to remember is that any diagnosis and/or label is just a generalization of a set of possible behaviors, and not a locked-in-stone definition of your child. Just as each girl with red hair and freckles is still different from other girls with red hair and freckles, each child on (or off) the spectrum is different as well.

    We’ve learned that just because one child with autism behaves a certain way doesn’t mean that our daughter will also. The same goes for treatment, too. The diagnosis is helpful to provide an overview and guidance on the direction to go in, but it doesn’t provide a step-by-step set of directions to follow, or at least it shouldn’t.

    Cordy never responded when we tried a meds study, but it worked for several other kids. She does respond extremely well to being free from artificial dyes, but that may not work for the next kid.

    I know it sounds scary now, but you will find the right path for her. It’s a little like wandering in the dark, but those of us who are a little further up the path are happy to shout out general areas where we stumbled, though, to help you avoid the pitfalls.

    She has a family who is concerned and loves her – she’s already got the best start possible.
    Christina recently posted..What’s In A Name?

  4. Posted December 19, 2012 at 2:23 am | Permalink

    Let’s see..websites first because that is on the top of my head ;)

    PACER Center is a good resource, so is CHADD.org. We also got a ton of help from the Fraser Center website. PACER is who I have gone too when we needed help with school issues, they are a great advocate for children that need a bit more help.

    Now, I am so proud of you. I know I have said it before, but I need to say it again. You are your daughters number 1 advocate, and you are are doing everything to make sure her education adn well being come first. So many others don’t. I am proud for M and the wonderful parents she has that work so hard for her, and that she will work so hard for herself in the coming weeks/months/years. It is a constant learning, and she is going to rock it.

    I will say that the best thing we ever did for Hunter after his (finally) evaluations was having someone for him to talk too, and someone for all of us to talk too. It was great that he could vent, and then we could all come together and talk it out a well. It really made a huge difference.

    I am here if you need an ear, been there done that over the years :)

  5. Celeste
    Posted December 19, 2012 at 10:01 am | Permalink

    I can’t offer any help, but just hugs. Lots of love to you and your little family.

  6. yasmara
    Posted December 19, 2012 at 1:15 pm | Permalink

    M sounds soooo much like my older son. He had a lot of trouble in kindergarten, partly because he was incredibly bored, which took me too long to realize (and I don’t think his teacher *ever* truly realized it). He was reading fluently at age 3 & so going over the alphabet letter…by…effing…letter bored him to death & brought out all the undesirable behaviors in school. Combine that with noise & chaos & it was a perfect storm for a horrible year.

    I thought seriously about asking for him to skip a grade, but since he was struggling with the social aspect of kindergarten, we didn’t pursue it. It didn’t help that his classroom was literally 90% boys, with a teacher who did not emphasize calmness, body control, etc.

    We met with the school social worker (I don’t think they had a psychologist on staff at that time) & my son had several sessions with a local (Golden Valley – email me if you want details) child psychologist, which luckily my work EAP program paid for.

    Honestly, I’m not sure how much he got out of the therapy – I think *I* got the most out of it in terms of coping skills & having an outside perspective. He has always gotten along really well with adults, but has much more difficulty with kids (ask me about the heartbreak of watching all the other kids play together at a bday party while my son was off completely alone – sob).

    We limped through kindergarten, with the teacher giving him a special “Library Pass” to get level-appropriate books (they literally didn’t have any in the room for him). He enjoyed the hands-on activities like science & art & needed a lot of practice with his fine motor/writing skills, so it wasn’t a total loss, but we breathed a HUGE sigh of relief when the year was over.

    He continued to struggle a bit in first grade (we went back to the psychologist a few times), but had a fantastic, wonderful, amazing teacher who really helped him grow socially. He has her again this year (combined 1-2 classroom, he’s in 2nd grade this year) and she is the best thing that ever happened to him! I can’t say enough how the right teacher really turned things around – she has special ed/early childhood training, so she was basically acting as a therapist as well as a teacher. She’s also willing to go outside of the box to offer him (and other kids) different work at their level & she’s fantastic at communicating with parents.

    His relationships with other students also grew – what’s funny is the other kids always liked him & wanted to be friends with him, but it was like he didn’t really know how to reciprocate. Honestly, the best thing we (unintentionally, ha!) did for him was to have a same-gender sibling very close in age! His brother is 19 months younger & a much more socially-aware, extroverted, average, bright kid. My older son would have been completely happy as an only child, but his brother has helped bring him out of his shell, taught him peer interactions, and given him a best friend for life. They do fight, don’t get me wrong, but they are also absolutely best friends. Even the negative things have become teaching moments – figuring out how to *ask* for alone time, rather than reacting with hitting when overstimulated/tired. We are still working on that one. Managing frustrating is still a big trigger – there was a Lego-related meltdown this morning.

    We are still the parents who leave events early to be home by (or before) 7:30 for bedtime, don’t have any babysitters except family (my parents), encourage our oldest to bring a book so he can retreat from stressful social situations, etc. Honestly, it doesn’t feel as restrictive as it sounds – we do plenty of stuff out of the house, etc., but we’ve also just naturally tried to accommodate the things that are relatively easy to accommodate so that everyone is happier.

    I think that it’s my job to be HIS best mom (to the best of my abilities) & that is different from someone else’s best mom. If we can do simple things & life is better, why wouldn’t we? I’m lucky that I work from home (full time, but a fairly predictable schedule) so we could pull the kids from before/after school care. It was a bit rough at first, but we’ve figured out a routine that works for everyone (snack, playtime, don’t bug Mama at work, etc.).

    Especially in Minneapolis, I think the teachers, principals, support staff, etc. are SO geared towards dealing with the failing students that it’s really hard to get any kind of services for the gifted kids. The school social worker’s response when I asked about accelerating his math (again because of boredom), was that he couldn’t possibly work above his grade because then he would “run out of math.” Cue my head almost EXPLODING! Run. Out. Of. MATH…

    Best of luck as you navigate these tricky times – hang in there!

  7. Posted December 20, 2012 at 6:59 pm | Permalink

    I’m here for you and will be in touch.

  8. J
    Posted December 27, 2012 at 10:25 pm | Permalink

    I cannot speak to what you are going through, but it sounds like several of your other commenters can. I can speak to my own daughter’s illness, which was heartbreaking and difficult. (She’s much better now) It was an illness that carries a lot of social stigma, so I don’t talk about it on my blog or much anywhere else. I will say that what was important for us was the following:

    1. Getting a team together that we trusted. Don’t like a member, get a bad vibe? Replace them. You all need to be on the same page.

    2. Remember that you know your child best, and that you love them most. No one else will fight for them as much as you and your husband will. Keep that at heart. It makes you strong.

    3. There is no shame in doing whatever you need to do to help your child get through things. Be home by 7:30. Cut out artificial coloring. Whatever it takes. We had a lot that we had to do, and sometimes it was easy, and sometimes it was difficult. Knowing #2 helped us to do it.

    Be strong. You will all come through this better for it on the other side.

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