The sun will rise as sure as there’s a day time
Don’t worry ’bout a thing….in time you’re gonna see
Your life is everything you make it
The hard times never last
Trust in your heart and don’t look back
“It’s Gonna Be Alright” (The Cheetah Girls)
As summer begins to wind down and the start of the school year is around the corner, my heart has been heavy at the prospect of Nik’s upcoming IEP. Niksdad and I already know that school is not willing to budge on some things —most notably a one-on-one paraprofessional for Nik. Their stance is that Nik is at an age where he needs to be able to generalize his learning and not rely strictly on one individual. The concern they raised, in our non-IEP meeting in July, is that Nik is smart enough that he may find ways to not pay attention to the actual teacher but look to his para for validation instead. In addition, the principal feels very strongly about educating the entire staff about Nik’s subtle seizure activity and promises that there will always be eyes on Nik. The principal is new to the school as of early July so I have to cut him some slack for his incredible naiveté. I know from first-hand experience that there are not always eyes on Nik and that there are times he has been virtually ignored by “seasoned” paras who were sitting right next to him in circle time —singing and gesturing their hearts out as Nik sat between them, ignored and not participating.
I know that my son has some very significant educational challenges and that the teacher really believes Nik has incredible potential; she just doesn’t have a clue how to “unlock it” (her words). I have tried my best to be helpful in relating my own observations and insights about what has worked with Nik. I’ve had countless conversations with the OT about my suspicions about Nik’s sensory issues being at the root of his extreme attention and regulation challenges. For whatever reason, my words seem to fall on deaf ears. This has often been the case with medical professionals as well; Niksdad and I persist and persist until, finally, Nik reaches such an extreme state that the doctors give in and investigate the things we’ve asked them to. Many, many times we have been proven right.
Righteous vindication doesn’t feel very good when you are watching your child suffer. Or regress in skills or fall further and further behind his peers when he once made such rapid progress that therapists were amazed at how quickly he learned.
With those things in mind and with the rapid and marked progress Nik has made in just a couple weeks of intensive work with his new OT and PT, Niksdad and I have decided it is time to pull Nik out of school. I’ve checked all the legalities with the Department of Ed (DOE); Nik isn’t required to be in school until he is five. Even then, it doesn’t have to be a public school, just “an educational program.” Our situation is such that Nik qualifies for significantly increased services through his Medicaid so we don’t have to worry about too many out of pocket expenses for therapies. As it is, the insurance has already authorized a 100% increase in his OT (from one session to two per week), a 200% increase in his SLP, and a 300% increase in OT. This means that Nik will now be getting the level of services which were recommended by multiple independent evaluations done over the past 12 months.
Sure, we could keep Nik in school and add the therapies on top of that, but we have to weigh the cost of that against the quality of life for Nik and for us as a family. He is simply too young to be spending every waking hour in some sort of rigidly structured activity. Seven hours of school each day —20% of that spent confined to a chair for tube feedings, plus another two hours of therapy daily (including travel time) —home just in time for dinner then bed (since Nik doesn’t nap much at school and cannot stay up much past 7p). Then throw in the time missed from school for doctor’s appointments…It’s just not realistic to expect ANY 3 ½ year old child to tolerate that much without some serious PLAY —let alone my little Energizer Bunny to the Nth Degree. The more we thought about it and talked about, the easier the decision was to make.
To say that Niksdad and I are excited at the prospect of Nik’s inevitable progress would be a gross understatement. Plus, the idea of not having to wrangle with school over every last little thing —the classroom staff about feeding, nap, and communication about Nik’s day, the school nurse over every last little tweak to Nik’s tube feedings, finding out the hard way that they ran out of diapers or some other supply for Nik, etc —feels like another headache mitigated.
I know it will be a challenging transition for us —Niksdad begins his nursing clinicals in another couple of weeks and will have very little free time (especially after putting in hours at Home Depot, too!) and I may feel slightly (a lot?) overwhelmed at first. But it also feels a bit like I finally get a shot at the “new mother bonding” that I didn’t get when Nik was born. By that I mean that he and I will sort of feel our way through it together. We’ll figure out a new schedule, new activities and adventures. I have already begun to set up a regular therapy schedule for Nik — the same time each day for OT and PT —and we’ve gotten insurance approval for the developmental playgroups, too! Imagine —built-in play dates! I have visions of finally being able to do the things that “the other moms” get to do —Mommy and Tot swimming, music class, toddler story hour at the public library. Walks in the park with other moms, the occasional shopping trip with a friend and her kids — things we couldn’t even dream about doing before because of Nik’s school schedule. And it’s not like I will get another chance at this gig…
I think I may become less angst-ridden about my own future as well. Niksdad and I had a long discussion about him being the sole income earner; he finally gave me “permission” to let go of my guilt about not contributing financially. I no longer have to think about rushing out to get a job —any old job for income — unless or until the time comes when Nik is ready to go back to school and I have an idea of what will make me happy. Have I mentioned how much I love and appreciate my husband? I DO.
I will no longer have to schedule my workouts around Niksdad’s or Nik’s school/work schedule quite as rigidly. I now have the freedom to put Nik in the childcare area while I work out and get a little “me” time. What a concept! I know my own mother is anxious that I will become more overwhelmed and exhausted, but I truly feel this is the right decision for us.
We will figure it out and find a new equilibrium. Just as we did in those awkward and terrifying first days at home after our 209-day NICU stay. I think we’ve done fine so far. In fact, I’d say we’ve done very fine, indeed.