Wow! When did I put on all the armor that comes with having a child with “special needs”? I have written before about how my son lives in the gap – he has no formal qualifying diagnosis but obvious needs. It has been a hard place to live at times and quite frankly I had gotten tired of people telling me I was just imagining things or I just needed to “let boys be boys.” For all of you who live in the gap, you are not imagining what you see and what you feel. I know this. So do you. My armor had everything to do with that.
I hadn’t even noticed I was wearing it until suddenly I realized I could take some of it off. And then when I sat down the heavy shield, I became aware of just how heavy and cumbersome the metal suit was. So, that had to go, along with the helmet. Now, here I stand more exposed yet also more trusting and more hopeful.
I am so thankful for being guided to the needed services at any point in time. Of special note is the OT who first said, “yes, this is a case of SPD but you need to read about Aspergers, too. It’s going to be hard to get the diagnosis because social skills are his strength but….” Ever so thankful for that candid comment that is proving to be oh so true. And an independent special educator who simply seemed to show up at the right time agreed he is most likely on the spectrum after many weeks of interaction with him… but she states that he masks his needs well and blends into the neurotypical world beautifully. To the end of helping others see his social and communication challenges, she has just completed the VB-MAPP on him and her written report will serve to guide his kindergarten teachers on how to best support his learning and social-emotional development.
This assessment will be the last in a series of assessments given to him from 2-5 years of age that his pediatrician has agreed to review at length along with other developmental history I will give him (like notes given to his early childhood teachers about his particularities and how to work with him best). His pediatrician asked for a copy of his assessments since for the second well-child visit in a row, I have brought up the assertion that my son thinks and processes input differently. Typically, this pediatrician (and all the others in our area) refer children to developmental pediatricians 2 or more hours away. But I insisted that I didn’t want to go anywhere else if they were not going to be able to see what it is we are seeing as his parents. And that’s why he asked for a copy of my son’s assessments – to see what he might see in them. I was beginning to think I was crazy and he really didn’t want to look through all this stuff until I saw him at the grocery store today and he confirmed that he still wanted that complete history.
But the armor really started to peel off after my son and I visited his new school – a small public charter school that promotes and teaches children how to make wise choices, self-regulate, accept and embrace individual differences, respect that we are all sensory beings, and cope with inevitable anxiety. To that end, the school uses Brain Gym and has a teacher dedicated to working with each class and with individual students. That teacher worked with my son last summer and was able to determine that some of his reflexes that should have integrate prior to or shortly after birth still had not integrated, making it harder for him to calm down when upset. She coached him on how to “hug not hit” when angry and encouraged he and I to practice tucking his neck to his chest and arms into the midline to recover when disappointed or angry. It took my breath away the first time he spontaneously came to me and tucked his chin to his chest, resting his forehead on me – six months after we began practicing this technique.
Besides that teacher, his main Kindergarten teacher has spent at least a solid hour with him just talking about what to expect and helping him compare it to his pre-K experience. She asked him to help her get the classroom ready for the start of school. A request that meant more to him than I think I still understand. His eyes brightened, his voice let off an air or relief as he said, “she really wants ME to help her? She must REALLY like me!”
And THIS is why the armor is peeling away. My son feels safe and is excited about his new school. I know there is and will continue to be some anxiety but I sense calmness from him when he thinks about Kindergarten. I know that the teachers at this school have his best interest at heart and want to help him be the person he was born to be. And I trust that his pediatrician will personally review his full history and share his thoughts about how to proceed at this time. Most of all, I trust myself to listen carefully (to what is said and unsaid) and act accordingly. We’re five glorious years into this journey and if the past has anything to teach me for the future it is that I still have a lot to learn but that it will be well worth it!
Comments
Lalita
What an encouraging story! Your dedication and advocacy have obviously worked for your son. It’s so wonderful to hear that all of our hard work really does make a difference.
bek
It does…It really does…just takes time to see it sometimes.
Sybil
Your story gives me hope! My son still has a year before he will start kindergarten and I am struggling with how to handle all that goes with that. Reading about the journey of other parents and then writing about our journey has helped me to become more open with and trusting of others. Thanks for sharing your story!
bek
Glad it gave you hope. Every teacher is different but I have overall found that they appreciate being given information ahead of time that is child-specific. Of course, they still have to experience the child and see some of what you are telling them before they can truly get it but the info we provide shortens their and the child’s struggle. My son’s Pre-K teacher called his Kinder teacher to insure she knew the strategies that seemed to work well for my son. This was the same teacher who planned on “fixing” the problems and sending him to Kindergarten as just one of the bunch with no special accommodations needed. What a difference getting to truly know the child makes!
Carissa
Yes – my son is in “the gap” too. Thank you for giving it a term!
Diagnosed with ADHD and SPD at age 3, but my husband and I have always felt there is more to it than that. I had him evaluated for Asperger’s, but the psychologist said it is too difficult to tell at his age, and will become more apparent around 5 or 6. My son, too, has good social skills, and at times blends seamlessly into the neurotypical world. Other times, not so much. It’s frustrating because no one really understands. As parents, we are the only ones who see the whole picture. I have to admit, I’ve had moments where I secretly wished for that Asperger’s diagnosis, just because it would explain so much, and make it easier to explain my son to the world.
So happy for you that you’ve found such a wonderful school for your son, where his needs are being met by understanding and compassionate people. That will make a huge difference in his life.
bek
The VB-MAPP may help to show where his social skills and verbal skills are not like the typical child’s. You’ll have to ask around to find a provider who uses it but when our provider went over the results it truly put into words some of the odd things we had seen but did not have words to talk about.
If you think its Aspergers, then trust your instinct. ADHD, SPD, and Aspergers can all co-exist and often do. I suspect we will get all 3 diagnoses before all is said and done.
Rae
Ah yes, the gap. I doubt myself more days than not, but it is good to follow that mommy-instinct that something is just not quite right and to do more than just waiting.
bek
I have spent months at a time wondering if I’m imagining things only to have someone else confirm that I am not. It is a difficult place to be.
One day, someone will do research that shows that parent instinct is a damn good indicator. In the meantime, pediatricians are supposed to refer children for a developmental evaluation even if the only indicator is parent concern.
Jenny from the Block
This really touched me. Made me cry…but in a good way I suppose!