Hitting the Road

posted by Momo Fali on May 2, 2013

I once read that kids with PDD-NOS “…don’t understand why things are wrong, that they are wrong, what affect they may have on others, or how their actions can make others feel.” I copied these words down for myself, but I didn’t note the author, so I can’t give credit where credit is due. My husband will probably tell you that I do that a lot. Not the stealing quotes part, but the not giving credit thing. In my defense, washing the dishes once per week does not a kitchen-helper make. I digress.

My 10 year old son has PDD-NOS. This stands for Pervasive Developmental Disorder, Not Otherwise Specified, which can also be called sub-threshold autism, or autism spectrum disorder, or GOOD HEAVENS WHAT IS GOING ON WITH OUR CHILD RIGHT NOW? We’ve called it all of those things at one time or another.

IMG00665

The fact is, no matter what you call it, it’s a disability. My son’s brain does not function like a typical child’s brain. He does not understand social cues, he has a hard time understanding figurative language, he exhibits repetitive behaviors, and he exhibits repetitive behaviors. See what I did there? He can also become easily frustrated. Though, I could say the same about my 14 year old daughter. *crosses arms* *rolls eyes*

For the past seven years we have been trying to mainstream this very non-mainstream child. We felt that our small school, with a focus on Christian values was just the right place for him to get not only an education, but also the love and support of our church family. But, I don’t think we can try to force this square peg into a round hole any longer.

We can not snap our fingers and have him suddenly be free of his issues. We can neither employ the same techniques used with other kids, nor expect the same results. He is a unique individual and he needs a unique plan and the comfort of being in a place where he, and his intentions, are not misunderstood.

It is not an easy decision to remove your child from the school where he’s spent almost half his life. It’s hard to turn away from the families and teachers who have supported us, but I want him to be in a place where he doesn’t stand out or get called out. For once, I want him to be the typical kid.

So, if you need me, I’ll be doing some research and lots of paperwork. I think we have a move to make.

    Comments

  • Lisa Daly


    Momo-While we didn’t have the same reasons for making the school move, I understand the hard decision for what it is. Have comfort in knowing that you will find the right place for him and that he will be happy! Lots of Hugs!

  • Lisa Daly


    Oh and what a GREAT picture!

  • MLG


    Oh, bless his heart. And yours. Fred told me the news yesterday… Happy trails!

  • Toni


    I know you all, together will find the best solution. And I know it’s hard enough with with Grandkids with no type of diagnosis, except for the ones we feel are being pushed upon them.

    Adam is an amazing boy, anyone that’s met him knows this for certain. He has already enriched MY life, along with the rest of your family. Keep that faith. And keep us posted.

    Much Love

  • twobusy


    As the parent of a another 10yo with PDD-NOS… I feel for you. And will cross all my fingers and toes in the hopes that you find a solution that gives him (and you) the kind of support and strategies that will make a difference, now and in the long run.

  • Vicki (Go Mama Go)


    Hugs to you Diane!! Adam is smart, witty, funny and kind. He’s going to be alright mama!

  • LisaZ


    I know how you’re feeling and my heart hurts. It’s one heck of a roller coaster you are riding. We had to make this transition of schools from 1st to 2nd grade about 20 years ago.

  • Angie [A Whole Lot of Nothing]


    Hardest decision ever. You’ll do it with your I Am Awesome flag flying.

  • Kellen


    When my (now 15-year-old) daughter was in 4th grade, we also determined that our small, parochial school could not meet her needs. She has ADHD and Pre-adolescent Bipolar Disorder. As scared and anxious as we were to make the move, it was quite honestly the best decision we ever made for her. The school she entered was the local public school, and they worked with us every step of the way to help my daughter learn important life lessons such as the difference between being honest and being too honest. Now in high school, we still have struggles and difficulties, but I can’t help but feel that things would be a thousand times worse without the education we BOTH received after the school change. There are (many) blessings to be found outside a parochial school, especially for kids with special circumstances. Trust God to lead you in the right direction. I’ll be saying a prayer that God continues to bless you and keep you as free from worry as possible while you go through this transition. Blessings to you all!

  • muffintopmommy


    Best of luck, Momo. You’re a great mama and I’m sure you’ll do right by your boy. Hugs.

  • Zak


    You got this.

  • tara


    That would be so hard. But it would be harder to watch him struggle in a place where he is constantly being called out for being wrong, or different, etc. So you’re making the right choice (in my opinion…) good luck!!

    Your son has a fantastic spirit. He will do great. You will do great.

  • J. Johnson


    I just wanted to encourage you with the decisions you are making. My son is now 19, but was diagnosed at age 6 with PDD-NOS. (Add to that, he is blind and ADHD, with a few other things thrown in the mix.) Due to his school situation, we actually ended up moving out of state to get in a better school system for children like him. He thrived in his new situation.

    Something to keep in mind – his psychiatrist told me that the PDD-NOS diagnosis is only valid until age 12. Then, the child should be retested to see if more symptoms have manifested. My son was retested at age 15, and he was then diagnosed with Asperger’s, which made quite a bit of sense.

    What always helped my son was that home was his safe place, and while I am still strict, I do not criticize who or how he is as a person.

  • Melisa


    Sending lots and lots of hugs during this transition and always. I know you’ll find the right place for him! xoxoxo

  • Christina


    I know you’re strong enough to do what’s best for him, even if it’s a hard choice to make.

    Cordy is also PDD-NOS and I really feel that we’ve got her in a good setting. She’s not at her home school, but it’s still the public school district. (Not far from you!)

    At first I worried about how far away the school was and if the public school could really meet her needs, but this school has so far been surprisingly good and they work so hard on the ideas of inclusion and accepting differences.

    It’s possible there are better schools for her in our area. But for the moment it’s working for us. She has a great support team and the principal is committed to making sure Cordy gets what she needs.

    I hope you’ll find the right fit for Adam, too.

  • Veronica


    You and Mike will make the right decision, you ALWAYS do. Your love and faith is so strong that no matter what route you take, Adam will be in the BEST situation for his needs.

  • Mama D


    A tough choice to be sure. Wishing you and him all the best with it!! I so understand wanting him to be the typical kid as opposed to the one who always stands out…we have one of those too. 🙁

    By the way, I just nominated you for a Liebster Award. No pressure to accept anything but the implied compliment!

    http://itttakeswisdomtoknowthedifference.blogspot.com/2013/05/lieb-and-let-lieb.html

  • Casey


    You can do this. It is hard. But will totally make the right decision. And if you don’t? You can make a new decision. Thinking of you and supporting you from here as you navigate this. So much love. (And please don’t disappear too much in the research! We need you too!)

  • Liz


    Sending you lots of positive karma and hoping for a smooth transition (((hugs))) also, please remember to take care of you <3

  • AlisonH


    Wishing you all the best, with hugs from here and wishing I could do more. It does sound to me like you are going in the right direction.

  • CyndyNewsome


    I hope it’s a good move for all of you. Poor little guy.

  • Megan


    I just stumbled upon your blog via @BlogHer. And just from this post I’m a fan!

    I don’t know you. I won’t pretend to know you. And I will tell you, I don’t know if I will have a child with a disability (I have a 13 month old so there’s no telling yet). But, I have worked with children, some of them with disabilities.

    The decision you are making is difficult, to say the least. But it is all in looking out for your son’s best interest. And, in my mind (we all know how thoughts can later turn out…), I would want any child of mine with a disability to be seen for the beautifully unique child they are but not seen as “not mainstream”. I would want them to be “mainstream”, which is whatever you happen to define it really, because honestly, what is “normal”?

    Praying for you in your search for a better atmosphere for him to be engaged and learn in.

  • Mare


    Sending a prayer for discernment. I’m sure that is a touch decision.
    from The Dugout

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