My son lives in the gap. You know this place — the one where the child’s issues are significant enough to impact their life (and yours!) but not significant enough to qualify for an IEP. As Molly wrote about in Duckery, these are the children that look like ducks to the casual observer but are really geese wearing duck feathers.
Hubby and I have been working with our son since before his first birthday to help him manage his particular sensory challenges. He was getting a reputation at daycare as a biter at 9 months of age. We bought him a chew stick and began feeding him apricots and prunes. The child LOVED these chewy items. He also loved crunchy carrots, which we have unfortunately had to eliminate due to an allergy. He struggled to fall asleep in his classroom – too much noise and way too bright. This was made worse by the fact that he was not on a regular sleep schedule at home either. At daycare, he loved playing with another boy who was a year older than him. My son’s little 9 month old hands would quite literally reach out and pull this boy on top of him. After about 30 seconds the boy would sit back up, only to be pulled back on top by my son. This action would be repeated over and over again.
So, having some knowledge of SPD because of another family we knew, we requested a private OT evaluation, which took place at 13 months. The parent questionnaire would have put him as having SPD. The teacher questionnaire showed less concern. The OT noted proprioceptive seeking, tactile sensitivity and seeking, vestibular sensitivity, and auditory sensitivity – but with the teacher’s profile being so different than the parent one she wasn’t willing to say that he DID have SPD. She offered specific suggestions for therapy with him but she was unfortunately going on maternity leave and would only be able to consult by phone. At 2 years of age, he qualified for services through the early intervention program under the social-emotional delay category due to sensory sensitivity, dysregulation (still not sleeping through the night, struggling to self-regulate), and compliance (he could not comply with requests due to his sensory challenges). We had to purposefully plan his OT assessment for times and circumstances that we knew were triggers for the dysregulation and sensory behaviors we wanted her to see; otherwise he would not have qualified for OT which we knew were critical.
Even at his first IFSP meeting, the professionals on his team agreed with us that his issues would probably not qualify him for an IEP. Because of this, we asked for and they agreed to an intense amount of services for the 9 months he would be in the program. And we continue to be thankful for the help that came as a result of this intense therapy schedule. He no longer bites others. He has a pretty good handle on how to regulate (even if he has chewed up and had to replace 3 Wii controllers). And he is sleeping through the night! Well, most of the time.
In the meantime, we have come to agree with the OT who worked with him 2 hours a week for 9 months at age 2: he will likely never be given a diagnosis of Asperger’s because he is so social with adults and generally with kids he knows but he exhibits many Asperger’s characteristics. We resisted this idea for a solid year after she stated it (though I did read-up on the diagnosis, I dismissed his behaviors as age-typical).
We asked the school system to reassess him, including an autism assessment, at age 4. After hubby and I completed the Australian Scale for Asperger’s Syndrome, we KNEW we needed to pay VERY close attention to his AS tendencies — we had marked a substantial number of behaviors, including hand flapping when upset. His 3 year old teacher marked 15 areas and we marked 23, indicating to the school system that they did need to do further assessment for autism.
Still, having met with him first thing in the morning (his best time of day) on two occasions, the psychologist said, “it was an absolute pleasure to test him” and that “he does not show ANY signs of autism.” An OT eval (also early in the morning in a room with little distraction) simply determined a probable difference for tactile sensitivity. Since the focus was on school conditions only, we were not asked to complete a sensory profile. The school reassessment determined that he has a 25% behavioral delay but no other delays and so he does not qualify for formal services while in school. Most of the recommendations they provided, however, to deal with his behavioral delays are recommendations given to those on the spectrum. So, where does that leave us?
We’ve had to do some advocating with his public school Pre-K teacher and we’ve provided some sensory tools, a weighted vest, and a weighted blanket. Unfortunately, he comes home from school and reports things like, “I did really good today. I didn’t even need my sensory tools!” Mind you, he has started biting his nails and chewing his fingertips (but he didn’t need his sensory tools). The teacher does acknowledge that she has to do things to help him manage. For instance, in gym, he has to “sit down and relax” because he gets too intense with his classmates. Or he takes a break and lays in the class beanbag. Still, her goal is for him to be able to go to Kindergarten and not need his sensory tools. Note that that is her goal – not ours. We know this is about management. We’ve been managing this his whole life. And so has he. For instance, the other day, his friend on the school bus complained that my son blew zerberts on his own arm the whole bus ride. I looked at the child and said, “trust me. If he wasn’t doing that, he might have bitten you. You WANT him to blow zerberts!”
Diagnosis or not, hubby and I are studying and learning about Aspergers and applying suggestions that seem to make sense for our son. We recognize his intense interests and try to capitalize on them in positive ways while mitigating the social oddity that can come with being able to play rated E video games as well as most adults at 4 years of age. For instance, we have a “no video games during play dates” rule since his friends lose interest after 20 minutes but he is just getting warmed up. We know and adjust to his needs. When he tells us for the umpteenth time, “I’m going to the potty.” even though we’ve told him he doesn’t have to tell us, we let out a long sigh and remind him that he does not have to tell us. And when his conversation once again cycles back to death, we respond to him frankly and honestly, again.
We’ve all been bridging the gap — helping him fit in, helping him understand himself, respecting him for who he is, and helping others understand him. But more than that, he bridges the gap back — helping us understand ourselves, helping us truly respect ourselves and everyone else, and helping us embrace the beauty of diversity.