504s and IEPs
When I became a mother, I began imagining what my boys’ lives would be like. I immediately desired everything amazing; but also knew that life is not without hardships and that each of them would have plenty of trials. I knew that some of these trials would also be my trial and I would grieve for them and/or with them. Bean and Keegs were healthy babies overall, they did come down with the occasional bug, but their first year of life was pretty uneventful. When I took them in for their 12-month check-up; the pediatrician asked me how I thought their development was going. It was then I asked her about typical baby babbling and around what age babies typically said their first word. Keegs had babbled from around 5 months on and said his first word at 8 months. Bean, on the other hand, didn’t make any sounds. He would cry and he would respond to us talking to him, he would become startled when a loud spontaneous noise occurred, but not one babble, no chatter, no words. At the time, I wasn’t worried, I was more or less curious about his development. It was super difficult not to compare Bean and Keegs with each others’ milestones since they are twins.
After speaking with the boys’ pediatrician, we decided that Bean needed to be evaluated to see if he needed any speech therapy. Shortly thereafter a team of specialists, consisting of a special education professional, a nurse, a speech-language pathologist, and a few others I can’t remember; came to our house to observe the boys and ultimately decide if Bean would need speech. In the end, he did, and so did Keegs. Even though Keegs was speaking a little and had babbled plenty in his infancy; he was doing a lot of ‘twin talk’ and was considered delayed as well.
We started speech therapy with home visits once a week. The boys loved it, the therapist would essentially just come and play with them while speaking words over and over, emphasizing certain letter sounds. She would bring a whole bag full of goodies, and the boys would sit with her and play and giggle. Keegs began improving with his speech, but Bean did not. Nothing really changed with him, he still didn’t babble or attempt to form words. After about a year of this, we decided we needed to do more testing. Did he have a hearing loss? Was he missing anything in his anatomy that requires him to speak? We were worried and blamed ourselves. Going through the medical testing for Bean scared us and every time he would do another test we would just hold our breaths waiting for the results. In the end, we found out he does have a minor hearing loss in his right ear; but other than that he was anatomically fine.
Bean finally said his first word shortly after his second birthday. He continued with speech therapy with Keegs. After they turned 3 they went from home visits with speech to attending a clinic that specialized in speech, occupational and physical therapy for children. Around the same time they switched to the clinical setting, I started to notice that Bean began having an aversion to certain things. He refused to play with playdoh, would have major meltdowns if food touched his skin, and wouldn’t set a toe into a bath if it had bubbles in it. Whereas just 6 months earlier he loved playdoh and bubble baths and couldn’t get enough food and would just shovel it into his mouth.
It was then that I had him evaluated by an occupational therapist. He was diagnosed with Sensory Processing Disorder which is on the autism spectrum. Basically, everyone has sensory aversions. If you couldn’t stand wearing jeans when you were little, you’d avoid them. Some kids don’t like clothing tags, some can’t stand buttons. I can’t handle crowds and it causes my anxiety to skyrocket. The difference between that and SPD is the anxiety builds and builds until the child explodes and has a panic attack. It’s major sensory overload. Someone with SPD cannot compartmentalize the anxiety. There is no reasoning with them and saying something like “you can wear these jeans for an hour and then you can take them off.” Just touching sand, or holding a piece of chalk, or having a soap bubble land on him would cause Bean to become inconsolable. Bean began occupational therapy in conjunction with speech therapy. The goal with OT was to help him overcome the things that cause him anxiety. The therapist began by having him hold chalk while wearing gloves so he didn’t get the dust on him. Then after he became comfortable with that, she would have him hold chalk with a piece of paper towel, then eventually he was able to hold chalk with his bare hands. Bean’s OT would have him do this with every aversion he had…little baby steps to show him he was in control and that he didn’t need to be afraid.
Bean has been on an IEP (Individualized Education Plan) since preschool; and before that he and Keegs were on an IFSP (Individualized Family Service Plan). Once children hit school age, they move to an IEP. Every year, in the fall, we meet with his teachers and his speech therapist at school to go over his progress, his goals and if he’s met them and then revise his accommodations. He is on an IEP because he needs services from the school district. Once he no longer needs speech therapy, he will switch to a 504. A 504 still gives accommodations, such as one of his accommodations is that he is allowed to take tests in a quiet location because one of his sensory issues is chaos and loud noises. Another accommodation is that he is able to have up to an added day to complete homework because he becomes easily distracted by the chaos of the classroom. Those accommodations will continue with him long after his IEP is gone. He will be on a 504 until he graduates high school because he has SPD.
On the flip side, Yo is getting a 504 because he is very advanced. Don’t misinterpret what I am saying, Bean and Keegs are equally as smart as Yo. Bean is a wiz at math and science. His teachers in the past have asked him to teach the class concepts that he has already mastered, and scores off the charts in those subjects. Keegs reads anything and everything in sight. He has quite the imagination and his fictional writing is full of depth and detail. Yo on the other hand, well…he’s just advanced. Period. He went into Kindergarten last year with a 3rd-grade reading level. He scored off the charts in all subjects for both MAPS tests he took last year. He was deemed the delinquent kid in the class because he was SO dang bored. The principal approached us with the possibility of having him skip a grade…which we immediately said no to. It took a lot of finesse and teacher/parent meetings to figure out how to best meet Yo’s needs. In the end, he was given a whole set of accommodations, more than Bean needs, to keep him on the straight and narrow and stay a model student instead of misbehaving out of boredom.
I will say this, having children with various needs, I would take an IEP meeting for Bean any day over a 504 meeting for Yo. Yo’s abilities have absolutely nothing to do with our parenting. He just is. His major downfall is that he is immature and very arrogant. It breaks my heart to see him in his classroom and feel insecure about his maturity so he lashes out. It equally breaks my heart to see Bean have a sensory break down or work so hard at mastering a certain letter sound when it comes naturally for most other children.
Since having children who needed accommodations for the past 9 years, it took me longer than I care to admit to accepting that this is life and it wasn’t my fault. In fact, sometimes I still blame myself. BUT…I also am SO extremely grateful for things like IEPs and 504s in the education system. I am SO grateful that my boys have had educators and therapists thus far that are invested in them as much as I am as their mother.
