I have so much on my mind —therefore on my endless list of things to write about, think about, research, or otherwise obsess about —it’s hard to know where to start and seemingly impossible to form elegant prose lately. (Well, that presumes that I ever had that specific ability!)
So, today I give you a simple brain dump. In no particular order…
Health follow-up: Nik’s still having some milder bouts of the persistent and weird pains that seem to be headaches but we really aren’t sure. We’ve gotten some articles from the neurologist about Red Ear Syndrome which can occur with migraines —but not always. So, we still have more reading and research, more data collecting and serious thinking to do before we take any steps toward medications. You already know my feelings about going down that road.
Eating: Like a pig. Seriously, three months ago the child was barely taking tastes of things and now he is voraciously grabbing at nearly anything. He’s taking in at least twenty-five percent overall by mouth on a daily basis. The percentage was a bit higher but we’ve had to increase his caloric intake significantly; when we weighed Nik yesterday morning, he’d lost weight —again.
Essentially, Nik’s down nearly a pound from where he was in August. And it shows. You can’t see it in pictures —mostly because I am not going to post photos of my unclothed child on the internet —but when he takes his shirt off, I can actually count his individual ribs from across the room and without my glasses! Seriously. His weight (and his height) now places him in the third percentile for his age group. His body mass index has dropped from the seventy-fifth percentile to twenty-third percentile. It seems no matter what we do we cannot keep weight on this boy. We see the nutritionist again in about four weeks. Meanwhile, we’re supplementing in simple ways by adding butter or olive oil for extra fats and calories.
Home schooling: It’s time to begin in earnest now that Nik has reached “official school age.” We are going to join a local home school umbrella group which will handle any attendance and record-keeping items with the school district so we don’t have to worry about any truancy visits! The task now is trying to find a curriculum that will challenge Nik without frustrating him —or me —into consistent meltdowns. I’m just beginning to evaluate some that have been recommended to me by various people.
Nik is showing signs that he is clearly learning and understanding so much more than he is able to communicate. I need to really assess where I think he is and what tools I need to help him develop in order to be ready for more advanced learning than he currently is doing. For example, Nik has pretty much mastered the alphabet in terms of being able to identify the letters on request. Apparently, it’s happening pretty fast with numbers, too! Just yesterday, I conducted a little test with one of his toys, asking him to identify numbers in a random sequence. It was slow and painstaking but it was one hundred percent accurate!
As I see it now, my biggest challenge —Nik’s most important goal at this point —is to find a way for Nik to communicate his intelligence with other people. I thought I had an idea of the path we might take to get there but now I am not so certain. Nik responds with some sign language when he is prompted to “use your words.” But he won’t use signs to initiate a request —we still get crying or physical prompting. I don’t think PECS is the right tool for him just yet. His visual scanning, tracking and attending skills are very poor. As a result, the cards become great toys or teething/mouthing objects with no real meaning to him. Similarly, the button devices we worked so hard to get for him still don’t have any concrete meaning for him and I cannot leave such things alone with him or they will be destroyed in a short time.
I think it’s time for another visit to the fabulous AAC guru we saw a year ago.
The next big challenge is to find ways to engage Nik that will help him develop a greater attention span. As I mentioned, he doesn’t scan and track well; this hampers his ability to stay focused —quite literally —on a task at hand. Because he cannot communicate yet in a way we can understand, we have no idea if it’s too overwhelming, too distracting, too painful, or that he can’t see things clearly. I think it’s time for another visit from the itinerant teacher for the visually impaired; maybe she has some exercises we can try to help him improve in this area.
Social Development: Nik has been giving very clear signals lately that he wants to play with us whenever we are around; he does not like to be alone anymore. This is both a blessing and a curse; it means I can no longer leave him playing happily in the family room while I tend to some other things elsewhere in the house. I still get small —very small —windows of opportunity here and there but it’s not enough. The upside though is that he is clearly becoming interested in interactive play. Not that you could have proved it from this week’s foray into a new play group. Still, it’s emerging.
The new play group is interesting; it’s led by the same therapists he sees for PT and OT, Miss T and Miss D, but it is very small. There are only four children —all boys — including another one named Nick; as Mom-NOS would say, I think he’s French, too. The format is the same as his old play group —you know, the one we had to leave suddenly due to his scaring all the children with his searing, screaming, head-banging pains. Uh huh, that one. Each week has a theme supported by stories, songs, some simple sign language (only two signs), and a variety of activities to engage all the senses.
This week, Nik seemed to be in his own little world as he wandered around the room with a musical toy in his hand. But there was a subtle difference this time; he was actually taking the time to explore things —touching the “snow” cotton balls or touching the stuffed snowmen. He also didn’t run into or over anyone on his way toward a toy or activity. A year ago he just plowed right through as if there wasn’t another body in his path! He even stepped around one of the other boy’s baby sister who joined us. He showed a much greater physical awareness of his environment than he has in the past.
I had to work hard to get him engaged in some specific activities but he did, ultimately, participate. For the first time, ever, Nik actually touched glue and helped decorate his own little snowman picture. Very big doin’s for my little guy! He even sat, mostly calmly, in the story circle at the end of the session; he wasn’t so much interested in the cute story about the old lady who swallowed some snow as much as he was in eating the vanilla ice cream cup snack! I fed him as he sat next to me like a baby bird —opening his mouth for each big bite.
It’s been a super cold week here —as it has nearly everywhere —with record temps and a small boy who likes to be unclothed. We’ve discovered that the play room is nearly ten degrees colder than the rest of the house; there’s not too much we can do about it — it’s a design flaw in the construction of this old townhouse and we can’t put a space heater in the room beacuse Nik doesn’t understand the boundaries of safety or the concept of getting burned —a concept I’d prefer remain theoretical for a very long time! We’re working on insulating places we can, caulking around gaps in the hearth, etcetera. Meanwhile, duct tape has become our daytime friend as well. Nik’s been a pretty good sport about it, too.
With Niksdad’s return to school —his last semester of his R.N. program —the responsibility for Nik’s every need returns pretty much to my shoulders. I forgot what an adjustment that is; I got spoiled by Niksdad’s month-long winter break. The transition has been a bit difficult for Nik, too. He misses his Daddy and knows he’s not getting the same attention he has gotten for the last several weeks.
Consequently, it’s not all been a bed of roses this week; like everyone, we’ve had our moments where we weren’t sure we would survive the next ten minutes or if we would sleep through the night. We did survive; we did not sleep through the night. There were moments of utter delight and sheer hell all woven together into a lush tapestry with hues so subtle that only the weaver would know they were there.
Yep, I know you know what I mean.
This morning, as I sat in the loft checking email, reading blogs and doing a bit of research, I started to really listen to Nik as he played down in the family room. His laughter and songs bubbled up over the balcony; I could see his smiling face with my ears. His each and every little sound is so richly nuanced that I cannot begin to imagine how much this child of mine has to tell the world. I listen to him admonish the pillows on the sofa or his scooter for not cooperating with his grand plans —whatever they may be. I listen to his enthusiastic singing of his favorite parts of the ABC song from Signing Time; it’s always a fair indicator of his mood since he looooves that song.
Feeling incredibly guilty that I haven’t yet struck upon the perfect combination of curriculum or methodology, but bolstered by yesterday’s foray into the local über-discount store where I found some preschool oriented materials cheap, I decided to simply go play with my son.
As Nik climbed all over me and we laughed and bounced, as we tickled and giggled and he asked for “more, more, more” with his flying hands and laughing eyes, it occurred to me that we were in the middle of a learning experience. When we play together, when I prompt him to use his language and communication skills, when he looks me in the eyes laughing and smiling, he is learning how to interact with others, how to express feelings, how to engage another person’s interest, how to ask for what he wants.
When I tell him “No more, Mommy’s all done,” he is learning about boundaries and limits and how to respect them; sometimes it works and sometimes it doesn’t, but he’s learning.
When I introduce a new toy —a small red foam ball and brightly colored bowling pins —he is learning the skills of observation, exploration, and discovery. Of course he does not do what I expect him to do —in spite of my showing him a few times. Instead, he laughs and throws the ball and chases it around the room; he tries to mouth the pins or stack them or link them like beads.
Watching him trying to sit on the six inch round foam ball time and again —as he does with his yellow playground ball which is three times the size of the foam ball, I laugh and shake my head thinking he’s just being silly. Then it strikes me that he is learning through experience about big versus little, soft versus hard. As he tries to bounce the red ball and it doesn’t go very far, he is learning about how different physical properties act. He rolls or kicks the ball on the floor and he is learning fine and gross motor coordination, visual tracking, and how to aim at another object.
It finally occurs to me that so much learning takes place in our household every minute of every day if I but step back to see it. If I allow myself to let go of the expectations, imprinted on my consciousness by so many years of traditional school room learning, and the goals I think are important, I can watch and learn from Nik where he needs to go next. I can follow his lead and use the skills he already possesses to build a strong foundation for him to continue his own journey of exploration, self discovery and learning. And I can incorporate his journey into mine.
You thought it was a tough situation for your kids in public schools now? Try being a home schooling parent in the state of California right now. A recent decision by the 2nd District Court of Appeals (re Rachel L.) states that “Parents do not have a constitutional right to home school their children.” Those are the words of Justice H. Walter Croskey in his Feb. 28 opinion for the court. The case decision mandates that a parent must now have a valid teaching credential in order to home school their child. According to Croskey, noncompliance could result in a criminal complaint against the parents.
The family in the case at hand in the 2nd District Court of Appeals chose to home school for religious reasons. That is but one of so many reasons a family might choose to home school. Other reasons may include safety or health concerns for your child, the need for a smaller class setting which school cannot or will not accommodate through a child’s IEP or 504 plan, or children involved in some aspect of sports or entertainment which require a self-paced learning progam —to name a few. I cite these examples because it is too easy to read the stories in the news and dismiss the impact because “it will only affect the religious home schoolers.” Not so.
Whether you are a home schooling parent or not, this decision could greatly impact your child. If other states follow suit, the result could be a very large influx of currently home schooled students —with either or both general and special educational needs— into the already strained (near breaking in many cases) public school system. Every student could be affected by a significant decrease in available resources in a system where most teachers are already stretched to the maximum in terms of class sizes and financial and material resources available.
Many teachers already use some of their personal funds to provide supplies for students in need as well as to supplement continuing budget cuts. If you think I am exaggerating, check out nearly any school’s list of supplies expected to be provided by families at the beginning of the school year. In my district, Kindergarten families are expected to provide tissues, folders, glue, hand sanitizer and the like; supplies which should already be staple items in a school.
Those of you who know me, either in person or on-line, know that I am not a terribly politically active creature; I prefer to keep my politics and religion to myself for the most part. But this issue has the potential to deeply affect me and my family; in my state, home schooling is classified as non-public and, as such, is not eligible for any funding, grants, or resources available to public and private schools —especially for special education support or services. Like it or not, the decision in the Rachel L case could affect your children as well. I cannot urge you strongly enough to read the articles, understand the court case and its potential impact on the future of education in this country, and then sign this petition.
You don’t have to be a California resident to make your voice heard on this issue.
Our kids —all of them— are counting on us.
Out for summer
Out till fall
We might not go back at all
School’s out forever
School’s out for summer
School’s out with fever
School’s out completely
Alice Cooper “School’s Out”
It’s official. We had our final IEP meeting today to withdraw Nik from school. It went better than we anticipated it would; Niksdad was convinced they were going to try to throw a wrench in the works. I was sure they wouldn’t. After all, they got the better end of the deal financially; they got funding for Nik because he was enrolled through October 1 and they are no longer legally responsible for providing services to him.
We had to hash out a few finer details such as the fact that the IEP signed under duress a month ago is not, in our opinion, a valid legal document. But, in the event that hell freezes over and we send Nik back to school before next September, he is entitled to receive the services outlined in that IEP. I won’t say “never” because that will only come back to bite me in the arse. However, Niksdad and I are very clear and very much in synch on the point that Nik will not return to school until the law says he has to.
We took Nik with us to the meeting; he was a great ice breaker. Miss J, his former teacher (“former” —I like the sound of that!), was a little stand-offish until after the meeting. I think she truly thought that we were taking Nik out of school because of the bad IEP meeting in September. In truth, that was only the final straw. After the meeting, J came over to say goodbye and to see Nik.
We made it nearly idiot-proof for the school and they seemed to appreciate it. One or two of the team members actually made it clear to us, after the meeting of course, that they thought we were doing the right thing. Miss D, the school OT (not to be confused with Miss D our new OT) told me she saw a difference in Nik since he’s been away from school and that she thinks he would be so much better off after a year at home. She told me to call her so she could go over the sensory evaluation and help us get that information to the new OT.
So, it’s over. Done. We are moving on down the road to new adventures, horizons yet unknown and unseen. I promise we’ll send lots and lots of postcards…
You can do it, all you need is a hand.
We can do it, Mama is gonna see to it!
Curtain up! Light the lights!
We got nothing to hit but the heights!
I can tell, wait and see.
There’s the bell! Follow me!
And nothing’s gonna stop us ’til we’re through!
Honey, everything’s coming up roses and daffodils!
Everything’s coming up sunshine and Santa Claus!
Everything’s gonna be bright lights and lollipops!
Everything’s coming up roses for me and for you!
(“Everything’s Coming up Roses” from GYPSY)
Woo Hoo! Time for a happy post and a happy dance!
As you know, I’ve been in that nasty ol’ rabbit hole lately and trying my darnedest to claw my way out. Of course, all the cyber ice cream probably didn’t help! Just makes my butt bigger…but I digress from the H A P P I N E S S I want to share with you all.
We had our appointment with the immunologist today; I’ve been really worried about this one since Nik’s been so sick for the last year and it doesn’t seem to be improving. Both Niksdad and I have been imagining the worst-case scenarios; it’s not a difficult leap to make for either of us, given what we have been through since Nik was born. Well, the doctor gave us some wonderful news today —Nik’s immune system has done significant catching up! While his immunoglobulin levels are still slightly low, they are at least I the normal range for his age group.
This is very good news, indeed. It means Nik’s immune system has been developing the proper antibodies in response to illnesses and from the booster shots he’s received. In fact, the doctor said he didn’t think we needed to worry about having Nik around lots of kids (as in a school/daycare setting) anymore. He thinks that Nik may have been so ill this past year because it was Nik’s first full-scale exposure to lots of stuff —ever.
Until Nik made it safely through his first two winters at home, we had to be super-cautious about exposing him to illnesses which could cause major respiratory setbacks. Since Nik’s first winter was spent in the NICU, his first real exposure wasn’t until the spring of 2006. He started school in June 2006 and has been sick off and on ever since. Most likely, he simply hadn’t had the time most toddlers have to build up antibodies before getting bombarded in a school setting. (Hmm, yet another affirmation of our decision to remove Nik from school this year; he’ll have a chance to develop greater immunity at a more normal pace.)
There’s a bonus. Not only is this good news from a health perspective; it means that Medicaid cannot force us to use the letter of medical necessity from the pediatrician which states that Nik shouldn’t be in school due to concerns about his health. The issue has become moot. “Why is this good news,” you may wonder? Well…
It means we can proceed with our plan to cut school out of the picture entirely and not have to worry about Medicaid trying to force them back into it. That would just be a legal quagmire at this point and we are not prepared to go there; we’d much prefer to spend our time and energy living our already too full life and working with Nik —playing, teaching, encouraging in the ways we know he thrives. Plus, with Niksdad in the clinical phase of his nursing school experience, I’d pretty much have to shoulder the burden of preparing for a legal fight all on my own. Um, no thanks.
But wait, there’s more! (“Yes, if you act right now, you’ll get this amazing set of Ginsu knives free…”) While I was out getting my shaggy mane cut, colored, fluffed and puffed this afternoon, Niksdad called the case manager at Medicaid to tell her about the immunologist’s report. We felt we had to be fair so she didn’t waste time trying to work an angle that would only lead to heartache for her. OK, that and the fact that we would be opening ourselves up to a potential charge of fraud (by the school district) if we proceeded to present the letter of medical necessity to school —thereby forcing them into providing services —and withheld the knowledge we gained this morning.
As you might imagine, Miss Case Manager wasn’t thrilled about it but she certainly understood. She’s actually a very lovely person and also a mother of two small boys so she completely understood the relief we felt; she also appreciated the medical expenses that were neatly avoided in Nik’s not having some sort of autoimmune disease! Miss C.M. has assured me all along that Nik’s best interests were being considered and that he would indeed be taken care of; I was afraid to trust her.
Today, I humbly admit I was wrong.
Apparently, this week while I was wallowing in the rabbit hole (well, it was dark and cozy down there), Miss C.M. was diligently following up with her supervisor, their compliance department, and the state director of Medicaid this week. They all agreed to authorize services for Nik in all areas —PT, OT, Speech, and Feeding therapies —for another TWELVE WEEKS, once per week in each area through the end of January. When Niksdad told me this, I cried tears of relief and joy.
I then promptly called Miss C.M. to thank her profusely. See, piss me off or —worse —screw with my kid and you’re on my black list; it will come back to bite you some day. Take good care of those I care about? You have my sincere gratitude and willingness to make sure you are recognized for your good deeds. Miss C.M. told me that once the therapists are nearing the end of the twelve weeks, they just need to submit for more authorizations; she said it most likely wouldn’t be a problem to extend them. Whew! Miss C.M. earned her place in my heart today.
While the 30 minute sessions per week aren’t necessarily as much as I think Nik could really benefit from, it is significantly more than he would be getting through school. I also know that I will attend and participate in each session and learn what to do at home. The value of the carry-over at home is significant; it is not something we ever got from school in spite of our asking numerous times. Besides which, I can now stack appointments on just a couple of days a week, leaving time available to do things like go to the park to meet Mom2Rebels, drive north to meet Irene, take Nik to the zoo, go swimming, take a music class, play in the leaves outside, nap on the floor of Nik’s room —whatever our hearts, mine and Nik’s together, desire.
Tonight, I feel like a tremendous weight has been lifted from my heart. I am filled with hope and joyful anticipation again. There are still hills to climb and unknown challenges ahead, I know. But for now the road ahead looks clear and smooth and I see a glimmer of a rainbow in the distance.
You feel like a candle in a hurricane
Just like a picture with a broken frame
Alone and helpless, like you’ve lost your fight…
It’s been a rough go lately. Between Nik’s lingering non-specific illness, sleepless nights, Niksdad’s demanding nursing school and clinical practicum schedule, and the specter of school not yet completely eradicated, I can honestly say that I have indeed felt helpless and like I have lost my fight. Don’t get me wrong, I won’t stop fighting for Nik, for my family, for myself. Well, if I’m completely honest, maybe myself a little —it’s always easier to put myself last when there are big challenges in our life and it feels like something has to give. But I am tired —too tired to stand today. (Forgive the self-indulgence which follows.)
On so many levels Nik is doing great. He’s recovered from our Texasinine dining experience and he’s still the same happy-go-lucky little boy he’s always been. The play and laughter are still present, though the eating anything by mouth still is not. He’s doing so much better now that he’s not in school. Except…
I know I’ve written about it a few times before so forgive me if I repeat myself —I’m too lazy to find the posts to link to. Nik’s been battling this odd “affliction” that no one can seem to identify. The lymph glands behind his right ear are chronically swollen —some days worse than others and some days causing more discomfort than others; the two are not necessarily mutual. Nik also has multiple nights of interrupted sleep from this same “affliction;” he will wake screaming in pain and hitting his head or biting his hand really hard. When this happens he is usually inconsolable. Advil given through his g-tube usually mitigates the worst of the pain after a while and he is able to go back to sleep for, oh, another hour or so. Then it all starts over again.
This behavior is not limited to overnights; it happens sometimes in the middle of a play or therapy session. This morning, Miss M got to witness it firsthand during feeding therapy. I thought she was going to cry because she was so upset for Nik. As quickly as it comes on, sometimes it can go just as quickly.
Throw in the lingering low-grade fever Nik’s been running nearly every day now since mid-September —in conjunction with the upper respiratory gunk, the ear infection, followed by the GI bug. Well, you might imagine that we are all a bit frazzled and concerned. Something is going on but no one seems to be able to tell us what.
Then, there’s the ugly specter of our school experience which isn’t quite over. You see, though we’ve had him home from school since September 17th, we haven’t yet officially removed Nik from school. I guess, technically, they can’t cite us for truancy since he’s not legally required to be in school. Still, the district might be able to argue that we are interfering with their ability to provide Nik’s free, appropriate public education (FAPE). The only reason this might be important is if we need to keep them in the picture after all. Though, one could argue that Nik’s IEP as it stands right now —still missing a speech/language/communication section with any evaluation of present levels of functioning as well as no stated goals and objectives, PT and OT goals which do not presume competence and do not address Nik’s significant sensory needs —could hardly be construed as a promise to deliver FAPE even if Nik were in school seven days a week!
I am still waiting for answers from Legal Aid. Meanwhile, school has scheduled an IEP meeting on the 15th for us to officially remove Nik and to “review the educational services for which Nikolas will no longer have access.” Ordinarily that wouldn’t make me anxious except I know that Medicaid now has a copy of the letter of medical necessity from Nik’s doctor. You know, the one that says he shouldn’t be in school due to his health? Yeah, that one. I am worried that they are going to try to use that as leverage to keep school in the picture and maintain responsibility for providing services. If that happens, we are back at square one as far as IEP’s go.
I can hear the old Clash song in my head, “Should I stay or should I go now? If I stay there will be trouble. If I go it will be double…” ARGH! Why can’t it ever just be a simple, cut and dried situation? And worse, why do I feel like the floor is constantly shifting under my feet?
I need to take some time to write out the pros and cons of each decision but I feel like I don’t have complete information for either case. On one hand, having school involved will mean slugging it out for an appropriate IEP; I already know that will involve due process and, possibly, litigation. Still, it would resolve the issue once and for all —hopefully in favor of increased and more appropriate services and supports for Nik. There are so many unknowns and the process can take so long. It could, possibly take us a year or more to get things sorted out.
On the other hand, if we simply cut school out of the picture, we run the risk that Medicaid won’t or can’t cover what Nik needs. Can we muddle our way through to cobble together some homemade program for Nik? Quite possibly, but it’s daunting and could have some pretty significant gaps in it —especially regarding speech/language/communication.
Why can’t I make a decision and stick with it and trust myself implicitly? Why am I so afraid of making a significant misstep? Why am I feeling so weak right now?
Why are you all so damned far away that I can’t come over and cry on your shoulder or drink tea (or something stronger) in the warmth of your living room or sit in the dappled sunshine in your back yard and recharge? It feels so hard to pick myself up and brush myself off right now but I know I must. But it’s lonely. Very lonely.
Even this doesn’t seem to help me today. Sigh…
I’m happy to report that Nik is feeling much better today. He’s been back to his normal self since yesterday afternoon. As Murphy’s Law would have it, by the time we got to the pediatrician’s office, Nik was fever free and rarin’ to go.
I have to say, Since we’ve removed Nik from school, every day just gets a bit better. Not so much that Nik is making miraculous progress overnight. More so that we are establishing a rhythm and a pattern to our days that suits us so much better than the frenetic pace we were keeping with school. Nik goes to bed a bit later now but then he can sleep a bit later in the mornings –except on the days we have a date at the YMCA (um, that would be me with my trainer and Nik with the childcare folks). For the most part, Nik’s been cheerful and chipper; even when he was really sick, he still had his moments of raucous laughter and singing. In fact, one particularly funny thing happened yesterday.
I’ve noticed an interesting behavior lately; Nik will put a finger in one of his ears and make a high-pitched “Bah” sound. He does this a couple of times, switching ears –sometimes doing both ears at once. I’ve thought, “Huh, Nik must be experiementing with sound somehow.” Pretty cool, yes?
So, yesterday afternoon in the doctor’s office, Nik cooperated so nicely as he helped Dr. M with her stethoscope and such. He even picked up the otoscope (the ear-thingie) and put it to his ear to help her look in his ears. As he did this, I heard the same “Bah” I’ve been hearing for the past week or so. Then, it hit me. Nik wasn’t experiementing with sound after all; he was imitating the sound of the thermometer beeping in his ear every time I take his temperature (I use the ear kind as it’s the only one he will tolerate). I about fell over I was laughing so hard. Well, I have had to take his temp a lot lately…still do, but that’s another story.
As for me, I feel a sense of peace these past few days; it seems to have settled over me only recently. Whether it is because things seem to have shifted since I spoke with Legal Aid (no new information yet) or if it’s simply because I have realized that we really are fine — with or without school or outside services. Yes, there will be issues to resolve –most notably in the areas of speech and autism supports –but each day Nik and I connect in new ways and find our way together.
I think, too, I am taking great comfort in the writings of some other bloggers –reports of new milestones, fun adventures, following dreams, settling in to a new home and home school, more than one mom deciding to take kids out of school. It seems we are all finding our way on this path of mothering our children and it feels like a sense of peace is indeed settling in for more than just me. Is that what happens when we follow our instincts in spite of the fears?
I am amused by Nik’s antics lately; laughter is so good for the soul. I don’t think I realized how little we’ve been laughing over the past couple of months; we’ve been so consumed by the struggles with Nik’s school. Lately, however, it’s as if Nik can sense the change in the air –the release of the tension –and he’s letting loose, too.
Today, we invented a new game together. Nik likes to do a lot of things hand-under-hand –meaning he manipulates my hands to do things. This has recently carried over into his using his hands to manipulate things like my mouth. Yeah, I’m not crazy about it but he thinks it’s the funniest thing since a Three Stooges marathon. Blame the feeding therapist, Miss M. She is trying to get him to imitate certain sounds so she had him put his hand on her mouth as she made the sounds. Well, Miss M doesn’t live here so I get to do this over and over. I don’t mind telling you it gets a smidge annoying.
So, today, just to be silly –and because I am taking Jonathan Levy’s advice to heart bout making more eye contact and joining in the stims– I played this little game but threw in a twist. Instead of making the M, B, or P sounds like Miss M, every time Nik pried my mouth open I made an animal sound. At first, Nik shook his head as if to admonish me, “No, Mommy, you’re doing it wrong.” After a few times of me making my best Donald Duck (and other animals) sounds, Nik caught on and began to play with great fervor. The more I made animal sounds, but most particularly the duck sound, the harder he laughed –a deep, jiggly, crinkly-eyed belly laugh. The harder Nik laughed the more I laughed. The more I laughed… the more Nik looked at me! We both laughed so hard we were giddy and teary-eyed.
I love having that kid home with me.
More like gnashes and wails and long paper trails –that’s what this little boy’s IEP will be made of! While Nik is still battling the upper respiratory bug and the ear infection which have kept him down (but never out!) for nearly ten days now, I’ve spent the last few days doing some research in preparation for another IEP meeting.
I’m hopeful that the next one will go better, or at least leave us a little less battle weary. We’re going to take a very different tack on this next go ‘round and will do everything in writing and record the session. We’ve already got some specific points we need to follow up on which weren’t addressed in the last IEP. And, going forward, we’re going to be cordial but, frankly, a pain in the butt about requesting an independent educational evaluation (IEE). We have already provided our own privately done evaluation which school has virtually ignored. You may recall that Bobo indicated that it didn’t matter anyway. Well, we’ll see about that one.
We will play their game only better. We’re going to be looking over the goals and objectives with the proverbial fine-toothed comb. We truly feel the goals they have set for Nik are not appropriate and seriously underestimate Nik’s abilities. Of course, we’ll also be looking for an increase in services and now, with the change of Nik’s placement from school to “home instruction,” we’ll be pushing for a teacher to come work with him at least one day each week.
The challenge now is for me to sit down and write up cogent arguments supported by facts and concrete data. It’s a challenge getting my emotions and mama-bear protectiveness out of the way. But I have to in order to give Nik the best shot at a meaningful IEP. I don’t want to go through another year like last year. I mean, I know that Nik will grow and progress and flourish on his own (well, perhaps Niksdad and I might have a tad to do with it, too). But the things he could do, the catching up he could achieve if he is given the right combination of supports, services, and challenges… he could actually benefit from his FAPE instead of just filling space and marking time.
In the time since he’s been home, in spite of his being ill and running a continual low-grade fever, Nik has been so much more animated and focused. He’s consistently (well, almost consistently) cooperating in most requests such as “lie down so I can change your diaper,” or “turn the toy off and give it to Mommy, please.” Yes, that’s right. Along with the newly emerging skill of standing independently, Nik has already made significant progress on TWO of his IEP goals. Frankly, I don’t think it’s much more than the fact that he’s not so bloody overwhelmed by is environment. But, hey, what do I know? I’m “just his mom” and can’t be objective. (Sarcasm dripping from her voice…)
So anyway, I may be a little quiet online for a while as I gather resources and compile data. I’ll be lurking and commenting from time to time but I may not write much this week. Don’t worry though, I’ll be back!
For some reason known only to them, Nik’s IEP team at school thought we were bluffing. When we mentioned that we wondered if school was the best place for Nik right now due to health concerns, I think they imagined we were trying to bluff our way into more or better services for Nik. While I will not deny that we want far more than school is willing to provide –in fact, we truly believe that Nik needs far more than school thinks he needs—we truly are extremely concerned for his overall health and well being. I mentioned this in a previous post here.
I think we need to remind school that Nik is not a “typically healthy” preschooler who just happens to have significant developmental delays. No, Nik is a child who has, in the worst of times, had a tenuous hold on life and, in the best of times, been able to remain healthy for as long as 2 consecutive months. His immune system is very weak. Perhaps his system is not as weak as a child fighting a life-threatening cancer, still Nik’s little body has been subjected to more antibiotics and surgical interventions and mechanical assistance than most of us will ever experience in our family lifespan. When Nik gets ill it takes him down hard and keeps him down. It takes Nik several weeks to regain his strength and return to balance, if you will. When he is in school and has maximum exposure to things that wouldn’t ordinarily level your average three or four year old, Nik barely seems to get his health back into balance when something else fells him.
We are fortunate that our pediatrician agrees with us and is in the process of crafting a thorough letter of medical necessity to support our removing Nik from school. We should have that sometime early next week. The good news is that it will allow us to remove Nik from an environment where he is exposed to every illness that comes along. It is also where he is bombarded with such intensely overwhelming sensory input that he shuts down after a short time each day. By the time he comes home from school, Nik is overloaded and out of control.
But, this new development also has a down side. Because we are not in a financial position to be able to take Nik out of school and pay for services on our own, and because Medicaid refuses now to pay for services that they say school is obligated to provide, we are going to be forced to deal with the school district after all. By law, if a child identified as needing an IEP is removed from school for medical reasons –versus simple personal choice– regardless of compulsory attendance laws (age 5 and over required to attend school; under 5 is optional) school is legally obliged to provide services to the child. This means that we will still need to agree upon an IEP which will dictate the level of services, etcetera which Nik will receive. The only difference is that he will not have to go to the school to receive them.
So, here we are again. Still frustrated and angry at the way the last IEP meeting went and having to crank it up all over again to find something we can agree upon. It is challenging, to say the least, as Niksdad would like nothing better than to cut Bobo (and therefore all of the school community) off at the knees; I mean that quite literally. Now, Niksdad is not normally a man prone to violent expressions of emotion or frustration so I know he’s beyond P.O.’d. Truth is so am I, but I know that we have to maintain some semblance of a working relationship with school as long as they are legally in the picture. If we thought moving to another school district was financially feasible right now, we’d begin packing our boxes!
So I’ve been mulling all this over for the past week – gathering data, evaluating the importance of certain goals and objectives, talking to our private therapists (whom we still have access to through November, I think), and so on and so forth. I’ve gotten names and contact information for people with the state autism society and the parent information center who might be able to assist us with wording of some letters of complaint and goals and objectives which will be put forth at our next IEP meeting –whenever that may be. I suppose in some ways, I am getting a great opportunity for a “do over” and a crash course in splitting hairs and balancing on the legal edge. It’s exhausting and confusing. And yes, our next step is actually to contact a lawyer from legal aid who can guide us through the process and, hopefully, avoid any need for serious legal intervention.
There are so many fine points I could enumerate about all the things wrong with Nik’s IEP, but it will just get me more riled up –to the point where I will not be able to function effectively. So I won’t go there today. Besides which, I have “gone there” so many times this week it’s not pretty. Of course, as Nik has gotten me up at 4:00 a.m. the last few days, I’ve had plenty of extra time for the journey!
I will say though that it amazes, and depresses, me to see how ridiculously low school staff sets the bar for our kids with disabilities. When “Johnny” is known to be a gifted student the expectations are stringent and sometimes set too high –I know from personal experience as “Jane” in grade school. Yet, when the child is identified as having any sort of challenge the expectations are so low as to be nearly insulting. (Point of fact here: Nik’s PT at school suggested it should take a year for him to learn to stand independently without pulling up on anything. Guess what Mr. Independent started doing all by himself this week? You betcha!) The goals are set so low and then school gets to be righteous in proclaiming, “What great progress your child has made! He met his objectives and, therefore doesn’t need increased services at all! In fact…” I guess it all boils down to who, in the eyes of school, has to do the greater portion of the hard work –the student or school? Seems like when school is expected to put forth a little extra effort, well…
So, I don’t know what it’s going to look like as we move forward –at least not in terms of therapies and educational supports for Nik. I do know that Niksdad and I have to weigh all choices in terms of what supports Nik in the longer term. Our greatest responsibility is, first and foremost, to ensure his physical health, safety, and well being. Without that, no amount of learning will ever be enough. I imagine it’s no more than any other parent would choose. But the very fact that we are forced to choose, well, as the Bard put it best. “Ay, there’s the rub.”