(Note: Photos added 6/25/07)
What I really wanted to write about is the ups and downs of our week. Been dealing with a variety of things. Some good, some bad, some just are what they are.
The bad first, so I can end on a high note. Got a letter from the neurologist —FINALLY —outlining his thoughts on Nik’s needs for educational support. To give some context here, the doc is a highly respected and brilliant man but he’s way over scheduled. We saw him in early April and have not yet gotten the official report. The letter, a one page summary, was sent only after I called and badgered his assistant —telling her, truthfully, that we were at a complete standstill around being able to advocate for certain things at school without that letter of support.
Be careful what you wish for. The letter is brutally blunt and, frankly, painful to read. In the summary, the doctor states that Nik has enough going on to warrant placement in a highly focused autism program (most likely at another school than where he is now), and that Nik may need to be in an even more specialized, smaller program to help with the “dysfunctional behaviors.” Ok, I know that the letter is strongly worded so as to get the attention of the school district, so they will take our requests seriously. I know that the letter does not negate anything about who Nik is or what he is like. But god almighty, it is hard to read those words in black and white.
Meanwhile, we are still waiting to hear back from the autism program evaluators so we can begin the IEP process, including any transition planning if necessary, for the start of the school year.
We are still struggling with Nik’s eating. After some great progress last week —moments which really made us all think he had turned the corner —Nik will not eat again. There is no identifiable physiological or anatomical reason for these cycles. I am not a trained expert, but I think the crux of the matter is sensory, compounded by typical toddler independence. Nik has the desire to eat and the hunger. He also has the drive to “do it myself!” but does not have the motor skills to coordinate self feeding. Nor does he have the oral motor skills to allow him to advance beyond pureed foods. Throw into the mix that Nik likes very strong flavors (horseradish, hot mustard, salsa, etc.) and food becomes a huge challenge.
There are days I have felt like a failure as a mother simply because the inability to help Nik in this area is just overwhelming. We’ve been through tons of evaluations and no one seems to have any insights. The speech therapist at school has basically done nothing —not a damn thing —to help Nik develop the oral motor skills he needs to eat. She has focused on the outside evaluations and consultations, “Let’s see what (insert name of specialist here) has to say.” Or has deemed it a medical issue versus an educational one.
When we told her about the upcoming eval scheduled for next week, her response was tepid at best. “Oh, maybe they’ll have something useful you can share with us.” I told her the plan is to create a prescribed feeding plan (including oral motor exercises to be done at or before each meal), she responded, again, with the medical vs. educational crap. I explained that this IS an educational issue and she continued to take a “let’s see” attitude. If Nik is placed in the autism program he “becomes someone else’s problem” in her mind.
I’ve already called the case manager to complain. One of Nik’s unmet IEP goals was around oral motor development as measured by increased intake of food by mouth. According to his report card, one of the supporting objectives was met because Nik kept his tongue in a more forward position THREE TIMES IN A ROW. Yes, you read that correctly. Out of an entire freaking school year, they think he met an objective because he did something THREE times. The boy is NOT eating by mouth at all right now where he started the school year eating nearly 100% of everything he was offered (pureed). ARGH! My next step is to ask to see all Nik’s therapy records to see just what the hell this woman has done (or thinks she has done)in those “minimum of 30 sessions per year.”
We see our fabulous behavioral psychologist, Dr. S., this week and will ask about referrals to outside SLP’s. We hadn’t wanted to set the precedent of distinction between education and medicine but cannot sit by and watch Nik struggle and fail. I would sell my soul to Lucifer himself before I let that happen.
So, that’s the bad stuff. Now, to wind up on a positive note…kind of like those Hallmark Hall of Fame movies…
Nik is making incredible progress in his physical and social development. He’s developing a funny rapport with himself in the mirror (and in windows, too!). Every time Nik sees himself in the mirror, he has to “kiss” himself (the whole hand over mouth, blowing a kiss routine) then sits down on the floor and claps both hands and feet as he laughs. It is hysterical to watch. Even better, though, is that Nik is also giving those kisses to Niksdad and me. He still tilts his forehead toward our lips but he now adds the “mmmmmmmmwah!” sound effect. Melts my heart every single time.
Nik is also beginning to do some of the “Itsy Bitsy Spider” gestures to himself in the mirror as he quietly hums.
My little boy is growing like a weed right now, too! Just ten days ago he couldn’t reach the latch on Nanny’s storm door —a fact for which Niksdad and I were very grateful as Nik is obsessed with opening and closing doors. Imagine my surprise yesterday when Nik reached right up and opened the very same door! Gulp!
Walking downstairs holding my hands —standing the entire way down instead of sitting on his bottom. He looks so proud of himself when he gets to the last step. As we pass the mirrored wall on the way through the dining room (long story to that decorating choice —not ours!), Nik stops, sits and claps with the boy in the mirror.
Let’s see, new sounds on the horizon. Lots of babbling but now with total inflection and intention —and sometimes significant intensity, too! Nik’s recently added a “raspberry” that’s more of a V or PH sound than a TH sound. (Sorry, I’m not good at capturing the essence of Nik’s speech yet. McEwen gets my vote for best technique there!)
Overall, Nik is making significant progress in either joint referencing or in leading us to what he wants. When I ask him certain questions such as “Are you hungry?” or “Shall we go zoom-zoom?” (which means in the car), Nik responds in both a physical and verbal fashion. He is making very deliberate choices when we offer him toys or something which requires choice. He really takes a moment to weigh the options before he emphatically makes his choice. Must get that from Niksdad —I’m the impulsive one in this family!
Nik’s attention span has generally improved. Don’t know if it’s dietary changes, maturity, or what…but we’ll take it! In spite of this, Dr. S. has mentioned wanting to at least talk about the possibility of medication for Nik to help him with self-regulation at meal times. It is not something I am comfortable with or willing to try yet.
Nik’s been communicating so much lately —like he did at the beach last week. It’s got to be so frustrating for him to be surrounded by a bunch of “dolts” who cannot interpret what he is saying. He clearly is saying something of significance when he talks to me. Sometimes I can tell by the tone that he is chiding me for something or that he is angry or tired. I can’t wait to see what we can come up with in the way of a new SLP to help Nik begin to have ways of communicating with others that isn’t about extremes of behavior to get attention.
Nik is making lots more eye contact with people he knows and loves. He totally captivates his Nanny and Granddaddy every single time they see him. He flirts and laughs and makes physical contact. His favorite pastime is leading Granddaddy around the house and upstairs and down. I love to see the joy and pride on my father’s face as he grumbles “are we done yet, Nik?” Yes, Nik requires LOTS and LOTS of energy.
Sometimes the sheer joy and pride I feel watching my son acquire new skills and deepening relationships —watching the unfettered joy and exuberance he brings to each experience —sometimes it just overwhelms me and I have to cry.
He is the Yin to my Yang, the up to my down. The joy to my sorrow. I don’t think it’s possible to love my son more than I do. But each time I look at him, I feel my heart get full to overflowing.
