A system that only rewards those able to be demanding

 I recently read a report a consulting firm wrote about an investigation they had done into a now closed school that had been part of the Boston Public School system.  None of my kids went to the school, but I read the report with interest as it was addressing larger problems within the district.  In the report, I came across this passage...  "Finally, we found that BPS’s current practice of more urgently addressing SPED issues or “crises” when they are raised by vocal parents results in an inequitable system within BPS where certain families are at a disadvantage because they may not be aware of this option and/or able to advocate for their children in the same manner."

Wow.  That hit me hard.  It brought back, vividly,  different times when I know that Janey missed out on help and services she should have gotten, because I was not one of those "vocal parents", because I didn't know how to forcefully push the district to address her needs urgently, because, as I've always seen it in my own mind, because I failed Janey with my own lack of knowledge or wimpy nature.  But reading that sentence, I was hugely struck by how unfair it is to expect parents of special needs children to both know what to advocate for and also to know how to advocate in general.  And I had a lot of advantages that many parents wouldn't have had---I speak English, I have a college degree, I'm fairly well-spoken.  Imagine if I were none of those things.

When Janey was first diagnosed, she was in a half day Boston Public Schools preschool.  She was there because she had a sibling preference, as her brother Freddy was a student at the same school, and she started, at age just turned 3, as a regular ed student.  When she was diagnosed, a few months after starting school, we called for an IEP meeting, which was held pretty promptly.  At that meeting, we were told verbally that the next year, when she was 4, for what Boston calls K1, 4 year old kindergarten, her needs were such that she would go to school all day, not half a day.  We didn't push for the whole day to start right away---I was okay with waiting until she was 4.

However, at the end of her 3 year old year, I was told that she wasn't going to get one of  the two full day slots in her class, that the slot had been given to someone else.  

I was very upset, of course, but I didn't insist or scream or call everyone I could think of or demand.  i should have.  But it's not my nature, and I also didn't want her moved to another school that DID have a full day slot.  I loved the school she was at.  I did ask hesitantly why they couldn't create a 3rd slot, and was told that "just wasn't possible".  

The slot went to another child.  I won't get into any details about that, but it was pretty obvious the other family did the things I didn't do---demand, threaten to sue, make their needs very strongly known.  That is what I should have done.  Or that is what I've always told myself.  But why?  Why wouldn't the schools just do the right thing?  Why did Janey getting what she needed depend on me being a parent who was informed as to what I had a right to, knowledgeable about the right people to call, and also willing to not worry about hurting feelings or alienating people?  

At that first IEP meeting, we were told that Janey would be assessed for ABA services.  That happened---about a year after we were first told it would.  The IEP services finally started a full year and a half after the IEP meeting.  I was told, over and over, that the district was swamped, that they just didn't have the resources necessary to do an evaluation, to say nothing of offer ABA.  Again---I let it go.  I mentioned it off and on, but I easily accepted the answers that it just wasn't possible.  I don't know if earlier ABA would have made a difference or not.  Over the years, the ABA services Janey has gotten have been (mostly) delivered by well meaning and kind people, but the providers seem to constantly change and to use widely different approaches.  I've been very pleased with the last few years, finally, in high school, with Janey's ABA services, but did she miss some kind of crucial time for help because I didn't demand she gets services for that year and a half when she was so young?

I should have demanded more.  I tell myself that all the time.  But WHY?  Why isn't the system set up to HELP THE CHILD WITH SPECIAL NEEDS, not to reward those with loud voices and special abilities to navigate the system?  Special needs kids occur in all kinds of families.  Why should Janey has missed out because we weren't good at demanding?

I've gotten more knowledgeable over the years, and I've gotten better at being persistent in getting what Janey needs.  I'm still not a pro at being demanding, and I probably never will be.  But in those early years, I was about as weak an advocate as I could have been.

Reading the sentence I read tonight in that report---I can't tell you how much it resonated with me.  It was like someone had finally seen what I had seen all these years---a special ed. bureaucracy that seems to exist to deny help, not provide it, unless they are faced with a very specific kind of parent---one with the resources, knowledge, means and personality to get what their child needs.  Boston schools have come close recently to being taken over by the state, and part of the reason is the problems in the special education central office.

The poignant part of this is that despite the lack of support from the higher level people, the rank and file of the Boston special ed. educators are truly some of the finest people you could possible imagine.  I can't even start to tell you how wonderful most all of Janey's teachers have been, as well as her aides, her therapists, the school staffs from top to bottom including the clerical staff, the cafeteria workers, the principals, the IEP team leaders---I am happy to count many of those people as friends, and Janey and our family are so lucky to have them.  And they are as unsupported by the bureaucracy as we are.

I know this isn't just a problem in Boston.  It's a problem that exists all over, and until we decide that we will put children first, and give them what they need to succeed, it will keep existing.  Let's have a system that, instead of waiting for the demanding voices to demand, listens instead to the unspoken needs of those who, for so many different reasons, don't demand but so much need the help.

Stress

 We've all seen the articles.  They are all over women's magazines, wellness websites, those flyers in doctor's offices.  Stress is harmful to your health.  But hey, here's some ways to reduce your stress!  I'm looking at one now, filled with gems like deep breathing, practicing yoga, taking a bath, reducing your caffeine intake, learning to say no, and, of course, practicing mindfulness.  Okay.  Yeah.  After I'm done laughing, I feel like crying, the kind of crying that comes from being completely unseen by those who are not familiar with the world of severe special needs.

Let's go over a day with Janey.  We'll start with the morning routine.  We wake her up (that is, assuming she's ever slept, which is a big if).  We determine if the bed needs a complete change, and if she needs a shower due to...you know.  We determine her mood---is she screaming and biting herself?  Or manically laughing?  All this affects how long it will take to get her dressed and ready.  Because---we have to be out there soon waiting for a school bus that might or might not show up within a range of time that is up to an hour either way.  But I'm sure a little caffeine reduction and some good old deep breathing is what the situation calls for.

Then---the "easy" part of the day.  Janey is at school.  Now, we only have to hurry and do all the things that are impossible to do while caring for her---bills, housework, shopping, and oftentimes, sleeping.  In there someplace, we need to do long term planning.  Janey is 17.  There's a lot to be done before she turns 18, and we need to get on that---NOW.  By the time we can draw a breath, the bus is heading home.  We haven't gotten in a bath, or any mindfulness---shoot!  We have gotten in a lot of mind-full-of-stress-ness, though---the worry that never quite leaves us every time Janey isn't within our sight. We love and trust her teachers and aides and therapists, but we don't know how her day is going.  Is she having a tough day?  Has someone else having a bad day of their own yelled at her?  Is she confused, scared, bored, overwhelmed?  Is she safe?  The stress of having a child who doesn't communicate much at all with us---that base level of stress, even on the easiest day, is never, ever gone.

And now, Janey is home.  We are happy to see her.  We hope she is happy to see us.  Some days, she gets off the bus with smiles.  Other days, with screams.  We check if her notebook is written in.  Did she have a tough day?  Did she sleep all day at school after a sleepless night?  Did she have a lot of "energy" (read that as manic energy, pacing and repeating phrases and laughing randomly)?  We hang on every word written, desperate for a glimpse of her life away from us.  

The afternoon and evening.  Janey, even in the best of moods, makes constant demands---"Want to go for a car ride?  Want a shower time?  Want tuna?  Want salami?  Want cheese?  Want Buzz Lightyear?" and the non-specific but highly insistent "I NEED HELP!"  Sometimes, we try the stress reduction technique of learning to say no.  Any no, even after minutes and hours and days of yesses, is met with a scream, some arm biting, stomping.  As we deep breath our heads off, Janey repeats the demand that caused the no, every minute for hours.  The things she asks for, I know, are things to relieve her own stress, stress which I am quite sure is as pervasive and severe as ours.  The warm water of the shower, the music and movement in the car, the videos repeated over and over---she needs stress relief too, and she doesn't know, isn't able to know, how that stress relief works on us---how stressful it is to be her parent, to want to do anything on earth to help her, even as we are falling apart.

Then---bedtime.  Or not.  These days, a night where Janey falls asleep at a reasonable hour and stays asleep all night happens probably 1 out of 3 nights.  The other nights---another 1 out of 3 feature short sleep, with her falling asleep easily but waking at 1 or 2 am to never go back to sleep, or her finally falling asleep at midnight or 1.  The remaining third---no sleep nights.  No sleep at all.  None.  That was last night.  And when Janey doesn't sleep, ain't nobody sleeping.  She constantly wakes us, either by asking for the same things as daytime---"Salami!  Shower!" or by screaming, or by turning on the TV or one of the devices she has, loud and endless..."It's fun to act like animals!  Fancy Nancy! Little Einsteins! Forky! Three Little Kittens!" ... the tunes that play on constant repeat, in my mind even when they are not actually being blasted.

And then it's morning, and it all starts again.

Janey is the love of our lives.  She is amazing, fascinating, beautiful.  And it is not her fault, in any way at all, that the stress of caring for her is...there is so much I want to say here and I won't. And I won't do what I am hugely prone to do, what I am sure many of you are prone to do, to minimize, to worry that speaking the truth of the stress is somehow wrong, to pretend that I'm fine.  I wouldn't do that because I know I'm not alone here, that others are living this life, and that one of the hugest stressors is feeling alone in your struggles.  You aren't.  I'm not.  And with that, I'm having another cup of coffee---today, as every day, is not the day to reduce my caffeine.

Sometimes, you do have to cry

I've been working at starting seedlings inside a lot this spring.  It's been a mixed bag of successes and not.  I started everything too early, and the spring has been very cold, but everything was getting too big for the starter pots and too leggy to live, so I had to put a lot of things outside before they were ready, and they are not doing well....and I could go on and on.  All this is said as background information for yesterday and my big cry.

Janey came home from school in her typical after school no talking mode.  We have worked out what she likes to do, and it doesn't need a lot of words---a little cuddle, then a lot of cheese and onions, then some videos, then usually a shower.  We did that routine, and I put a dress on her to be ready for the next part of her evening routine---a car ride with Tony when he gets home.

Not my actual seedlings, but very similar ones!

Then I made my big mistake---a quick check of my email.  Janey was happy, in the next room, watching a video.  I got an exciting email from William, the older of Janey's two brothers, saying he had been nominated for a history honor society, kind of like Phi Beta Kappa for history majors and historians.  I was very proud of him, and wrote a quick email back to say so, and then started to forward his letter to his grandparents.  Janey came over at that moment, and I noticed her dress, previously clean, was covered with dirt.  I ran over and saw she had somehow, in the literally three to four minutes I hadn't been actively watching her, played around with some pepper seedlings I had been planning on planting outside that afternoon later.  They were all over the floor, dirt was everywhere and a spring's worth of growing them was going to be for naught.  It was actually pretty impressive how much she did in so little time.

I stayed calm.  I didn't even feel like being angry---I don't get angry that often.  And at first, I didn't even feel that upset.  But as I started to clean up the table, floor and Janey, I started to cry.  I couldn't stop, once I started.  I had been feeling low for a few days, and it all hit me hard right then---that still, after all these years, it was still impossible to have a few minutes to myself, how it felt unfair to William and to Freddy how rarely I could concentrate just on them, how I couldn't see any end in sight to the tough parts of life with Janey.

As I tried to clean, she decided she wanted a video.  I told her I had to clean up first.  She didn't take that well, and started screaming and arm biting.  I kept cleaning, and kept crying.  When she saw I was crying, she gave me a curious look, but then went back to screaming "I WANT KIPPER!"  In that moment, I felt totally defeated.  I felt like I can do all I can to keep Janey happy, and still, the minute I can't do what she wants that second, she's furious.  She doesn't think "Gee, she's been doing what I wanted all afternoon, and in fact for years, really.  I made a huge mess and she's cleaning it.  I could lay off her for a minute"  Of course she doesn't think that.  It's not in her to think it, and when I am not in a state, I can accept that.  But as the vacuum jammed and the floor became more covered with wet dirt and dead seedlings, I wasn't thinking well.

Life with Janey isn't easy.  I know here I'm supposed to say life with any child isn't always easy, that the special rewards of being her mother make up for the tough times, that it's not a child's role to make the life of their parents easy---I know all that, and I believe all that.  But there's a difference here. Although she makes some progress in some ways, although as I wrote about recently, her stages like the mischief stage do eventually get better, Janey isn't ever going to really grow up.  There isn't going to be a day when she truly understands that I'm doing the best I can, that maybe she could wait five minutes for a video while I clean up, that she shouldn't toss dirt on the ground, that I have feelings too.

I've regrouped today.  I'm ready to get back out there, to do my level best to help Janey have a good life, to try to be the mother I want to be.  But I am pretty sure each of you knows the feeling behind the tears yesterday.  If we don't admit it's tough sometimes, it's a very lonely kind of sadness.  We have to be able to admit this isn't an easy gig, being a parent of a child like Janey.  I am going to resist for now the urge to modify that statement, and just let it stand, for now, for once.  It's not easy.

Sleep, Depression and all that jazz

I'm starting to think that if I want Janey to do something, I should just say here on this blog she never does it, because then she will.  I said the other day she never naps, so of course a long nap of hers about ruined this weekend.

Friday night was a little tough.  There were meltdowns, which I wrote about, but I did practice what I preached here and got her calmed down and sleeping.  For a while.  She was up about 3am, ready to party. She hasn't done too much night waking lately, but when she does, well, it's not easy.  I'd say it's almost like torture.  I feel desperately tired but I have to make myself stay awake, to keep Janey safe.  I do everything within my power to try to get her to sleep, but if you have a child who has no desire to do things just to please you, who understands what you say only some of the time, who has an inner motor which goes off at its own times---trying to get them asleep is about as successful as trying to herd cats.  Janey alternated between crying and hysterically laughing.  We did what we often give in and do and put on Netflix, and let her watch some TV, which allows us to sometimes drift off for a minisecond if we are sure she's engrossed, but no longer than that, or she'll go into the kitchen and toss stuff around, or suddenly get a notion to jump on Tony or me, elbows out, poking us hard.  Even if none of those things happen, after a while something triggers a desire for a snack, and she starts demanding "I want ketchup!  I want sauce (tomato sauce)!  I want noodles!  I want chicken!  I want purple ice cream (which is what she calls all ice cream now)!" For variety she throws in a few "I want to go outside!  I want snuggle with Mama! (which always sounds so promising but only lasts a few seconds before she hops up again)  I want shoes on! (which means she wants to go someplace in the car)"  We say the right things---we don't eat in the middle of night, we are all going to sleep right now, it's not time to get up---but saying them, truthfully, does less than no good.  And so we exist in a zombie-like state until she falls back asleep, which she did about 7, and then she woke up again about 8.  

Usually she's up for the day, but for some reason, not Saturday.  She lay down about 11 and slept right until 2.  We tried to wake her half-heartedly a few times, but to be perfectly frank, it was pretty relaxing having her nap.  We had 3 hours of Saturday to do what we wanted with---of course, within the house and boys allowing.  When she got up, though, she was not in a good mood.  It was a fussy afternoon and evening, until she got back to sleep about 8 (no matter what, she goes to bed about 8.  Now watch that not be the case tonight).  And yes indeed, she was up at 2am.  We gave in pretty much and just got up with her.  We watched TV, including at around 4 a very interesting nature show about Australia.  Janey drifted off around then, and we were back to sleep until about 7.

That's a long story of sleep and not sleep---you are probably asleep now reading it.  And it has induced in me today a huge bout of depressed feelings.  When I have a few nights like that, I get NOTHING done the next day.  I don't get laundry done, work done, cleaning done, dishes done, anything at all.  Tony does a little better, and he has been a saint today---cooking and taking Janey to the playground and all that.  And I sit around and hate myself for being so tired all the time.  I try to reason with myself---I say all the right things---that anyone would be tired after a few nights like that, that just getting up and taking care of Janey every day is work enough, so on and so on.  But I hate days like this.  I hate feeling like a loser, like someone who barely has the energy to crawl to the couch and crochet all day.  I hate the mess around me that never gets cleaned up, because I never have the energy to do it.  I hate my medical issues that make me even tireder---the latest fun additions there are Sjogren's Syndrome  and Undifferentiated Connective Tissue Disorder, which I won't get into the details of because my mother always taught me that no-one wants to hear all the details of your medical issues, but you can click on the names for a link if you are interested---but they both have the side effect of severe fatigue, as does my thyroid disorder.  And yet I still feel like a lazy person for being tired, a hypochondriac although I have blood tests with concrete numbers to show I do have a reason for being so exhausted, beyond just being 47 and caring for a toddler in an 8 year old's body.

This isn't my best written entry here, I know.  I am rambling a bit, probably because I can barely keep my eyes open.  But it helps to write.  Thanks for listening, if you've made it this far!

Terrible Twos? Terrible Eights?

It's a little hard to describe how Janey has been lately. If I had to pick one word, it would probably be "trying". She has been very trying. But if I had a few words, I'd try to capture the good parts too---funny, alert, connected. And a few more not positive ones---naughty, defiant, loud, angry.

It feels a lot like what we have been told the terrible twos are. Neither William nor Freddy were particularly terrible at 2. William was tougher around 4, Freddy as a baby (and some could say, in some parts of his teen years, but that's hitting a little close to home, sorry, Fred!) But she is acting like I've heard the terrible 2s described. Everything is a big deal. Lots of NO NO NO, lots of loud demands, lots of just making herself heard. It's great, in a few ways, but as many things with Janey, the tough parts are magnified. Part of this is just she's a lot bigger than a 2 year old. I can't lift her any more. She is rapidly gaining on me in strength, and getting taller all the time. You can put things out of a 2 year old's reach, but not an almost 8 year old.

A few scenes---Janey wanting bacon. She asks once a little nicely, but her patience is gone after that. She gets right in Tony's face and screams "I WANT BACON NOW!" shaking her finger. Needless to say she didn't get any right then, but we almost had to laugh, that first time. It's not quite as funny now that she is using that tone for almost anything she wants. Later--Janey is wet. She is doing better with the potty, but far from perfect, but finally, it bothers her to be wet. We are in the drug store, and she wants to be changed. RIGHT NOW. She screams at the top of her lungs "I WANT PULL OFF. I WANT TO BE CHANGED!" She gets down on the floor and tries to pull off her shorts. I go to take her out, but I can't keep her contained. Tony has to take her instead. It's why I don't do things solo much at all any more. It's too scary. Another scene---Janey is in the back yard. She notices the neighbors are having a cookout, and goes to the fence and yells to them "I WANT A HOT DOG!" They are probably so startled to be addressed directly by Janey they don't know what to say. I take her inside for a hot dog.

But a more cheerful scene---we are picking up Freddy from a class he's been at. Janey is like a comedian in the car. She repeats almost everything we say, with a funny twist or a changed word. She recalls long ago phrases, and seems to be doing little routines. She sasses at Freddy, in a little sister way. We are all laughing our heads off. She's like a one woman show.

She gets very defiant. That's the hardest part. She wants some of my coffee drink. I say no. As I turn my head, she grabs it and flings it on the floor, then looks at me. It feels like she wants me to yell, and I give in and yell. I am not a yeller. But I am yelling repeatedly lately. I hate that. I can stay calm if I feel she doesn't know what she is doing, but lately, it feels like she does know very well. She wants a little excitement.

I think, overall, it's a good stage. But a very, very, very tiring one.