Tag: special needs kid

IEP: Four Years of Being a Pain in the Ass Pays Off

martini shaker

Max’s new toy is a martini shaker.  He likes to mix sodas and has moved on to fancy juice mixes.  Yesterday he made me a cherry vanilla juice drink and then a cherry lime with two drops of vodka for me.

He also ate two small cheese sandwiches on toasted sourdough bread with butter and mustard.  Normally I would never put butter on a cheese sandwich but he insisted I make him buttered toast and then turn it into a sandwich.  This kid has not liked cheese since he was small kid.  There was a very brief romance with Baby Bel cheeses and not long ago he tried a thin slice of cheese on a veggie burger and didn’t like it.  Otherwise the texture of cheese has been deemed unacceptable to him for years.  Cheese crackers are a different story.  The Oatmeal writes about cheese and cheese making and suddenly he wants to try some cheddar or Swiss cheese.  He ate a small piece of cheddar and liked it.  This is one of those times when social and media influence is pretty great.  Now he wants to try the elderflower cheese we’ve been raving about that Philip discovered at Trader Joe’s.  He wants to try sharp cheddar too.

His expanding tastes are both wonderful and baffling.  He is still finding it difficult to stick with flavors and new foods but his continuing exploration is absolutely the best thing an extreme picky eater can do.  He’s finding enough new flavors he likes to convince him that there’s a lot of potential for enjoyment in the food world that he was previously not open to.

But the biggest news is that he finally got an official IEP!  It only took four years of badgering the school system in Oregon and continuing down here in California to make this happen.  As could be expected, Max didn’t qualify for any major well defined learning disorder or meet any of the markers for autism that the school uses.  The speech and language specialist did say that he definitely shows some autistic qualities – but falls in a grey area.  He will get help with pragmatic language use and social interaction because she found that he doesn’t register subtle social cues at all.  Academically Max is predominantly in the Superior range with his math skills falling in a couple of different ranges which revealed (as explained to me) that he understands high math concepts but when it comes to the basic concepts he has difficulty which is explained by the main thing the evaluations revealed.

Max has a significant visual processing deficit which especially affects his math skills.

Some of the information revealed wasn’t that surprising and others were.  The visual processing deficit explains things that I wasn’t even looking to have explained but the fact that Max has such difficulty with drawing assignments – and it isn’t that he can’t draw because he most certainly CAN – it’s that it’s harder for him and takes him longer than average and he gets frustrated and overwhelmed and gives up.  He found a great drawing expression in stick figures and is quite good at making very expressive stick figure animations and comic strips and I get why now.  Last year he drew a fleshed out hand for a poster project and he hadn’t tried drawing three dimensional for ages and suddenly he whips out this really well drawn hand – so he can do it but he avoids drawing quite emphatically most of the time.

This also explains his strong aversion to writing assignments, an area also affected by a low visual processing time.  Writing assignments make him anxious and he loathes having to erase even a single word an rewrite it because, in his mind, every word he writes TAKES SO MUCH TIME AND EFFORT AND HAVING TO DO EVEN ONE WORD OVER IS LIKE ASKING HIM TO SKIN HIS OWN FINGER.

The math thing is weird because in fourth grade he was put in advanced math because the teacher said he was bored with the regular math curriculum in class and knew the material really well.  He has also tested between average and above average on nearly all his state math tests.  In sixth grade the math teacher thought him gifted in math and if you remember – tried to make him learn programming.  Which Max HATED.  He said he hated starting with that awful blank screen and then filling it with those 0’s and 1’s.  Which maybe makes sense now if his visual processing speed is significantly low.  Programming might be a certain kind of hell for someone with that issue.  In any case – the math deficiency surprised me but then it made sense.  Max has always disliked math even though his teachers have all thought him on the gifted side with it.

After coming home I wondered if it was necessary to continue having Kaiser evaluate him, now that he has an IEP.  That’s been my driving aim – to get him some extra support in school.  I’m waiting for one of his teachers to fill out an evaluation form to give to his psychologist so that we can move on to the next step.  It’s understood by me that Max, obviously being so high functioning, very likely may not end up being diagnosed with anything.  As the psychologist says, we may just have to conclude that he’s an “odd duck”.  So do I use up Kaiser resources to have him evaluated?  What can be gained by any diagnosis if they did find he met their diagnostic markers?

I was on the verge of calling it off but I’ve decided to go ahead with it and here is why: the school’s evaluation uncovered an issue that has significantly been affecting Max’s academic experience even if it hasn’t resulted in academic failure.  This is something no one suspected or suggested before and now that we know what is going on – it can be addressed and knowing where he’s got issues can help him succeed.  As a parent I can help him better too – in coaching him through homework I can explain to him why he is struggling and why math makes him so anxious and why written assignments not only take him so damn long but stress him out so completely.

The school tests are all geared toward revealing academic shortfalls and challenges.  But a psychological/neurological evaluation covers a person’s whole orientation to the world.  Maybe Max will be found to not have any specific disorder.  But what if evaluating him can show us areas of significant challenge that could then be specifically addressed?  My main problem is knowing how to help Max in his life.  Socially he is not normal and I have major concerns about how healthy his social life can be if some of his issues are not addressed.  The value in seeing if he fits into an established set of behaviors that has a name is that if he does – I can more easily discover what has a tendency to work well for others with the same set of behaviors and also seek support for him with those peers.

If he doesn’t really fit into any specific group – the evaluation still may uncover some specific areas of difficulty and give me something more concrete to grab onto when trying to navigate his social and emotional well-being.  A job that has sucked a lot of years off my life so far.  Well, that, and feeding him.  At least feeding him is finally becoming more of an adventure than a constant punishment in which I don’t succeed at nourishing my child healthily.

This information seeking mission is not complete until he has been evaluated by the psychologist and then, if it’s warranted, the Kaiser specialists.  I need to see this completely through.

In spite of not being done yet – I am so happy to have finally succeeded in getting Max an IEP and knowing specifically where his challenges are and the school is now on board and coming up with ideas to best meet Max’s need.  I appreciated that all of the people in the meeting unanimously agreed that taking Max out of drama class to attend a special ed class was not acceptable as he loves drama so much.  I also love that they all agreed that it would be a bad idea to rearrange his schedule forcing him to change his science teacher because apparently they all know that Max LOVES his science teacher and to mess with such a good arrangement wouldn’t benefit him since Max’s greatest areas of interest and his greatest gifts are with science and the language arts.

Lastly – I did not push for all this evaluating so I could hear my child be praised.  Some of what I just read in his report causes me concern and makes my heart a little heavy – yet every person who evaluated Max loves him.  They all think he’s super smart, funny, and charming.  And the speech and language specialist loved that Max told her what great parents he has (she included it in his report) and the school psychologist said she was so impressed in her first meeting with Max in which he talked incredibly lovingly of his cats.  His current English/History teacher said that Max is one of the best students he’s ever had.

Also – she said he has the vocabulary of a 28 year old.  But we already knew that.

When you’ve spent so much time worried about your kid and had so many challenges coaching him and propping him up and having your heart break when the world doesn’t get him or doesn’t like him – hearing these things is deeply gratifying.

Wild Turkey Sunday: The Mother Balance Sheet

mama turkey

I have become the biggest pain in the ass on Max’s behalf.  I am starting to feel like I carry a big-ass hatchet across my back and pull it out the minute anyone suggests I tow the goddamned line and force my son to swallow shit pellets and LIKE IT and PUSH HIM HARDER IN EVERY DIRECTION.

I have a hard time with confrontation, so having a child who needs me to go to bat for him constantly is not something I am at all comfortable with.

I have heard so many mothers say that their kids brought out the best in them, that their kids made them better people.  I don’t know that this is true for me.  I don’t like who I have to be a lot of the time to be a good mom to Max.  I don’t think becoming a parent has made me stronger or better or more whole.  At least not by conventional standards.  I had to become medicated, I became a heavy drinker, a yeller (in the early years), I have become obese, I never relax for a second, I can never quite meet my kid’s needs… I have become more inadequate than at any other time in my life.  Reminds me of when I could never measure up to my dad’s idea of how children should be, how they should perform, how they should grow up.  It constantly reminds me how crushing it is to love a person but never be able to  be ENOUGH for them.

Every day I wake up and wonder what I need to do today to get my son to a successful adulthood.  I do it because I couldn’t live with myself if I didn’t do everything I can for him.  I do it because he’s my favorite person and because even though he has such trouble empathizing with other people he is so unbelievably sweet to ME.  Asking me if I need a hug when I’m tearing my hair out.  And because he forgets the times I’ve yelled and remembers all the times I didn’t make him feel bad for being different and for believing that he isn’t trying to make things hard for us.

My son has thanked me for loving him even though he’s so hard to feed.

My son has thanked me for letting him be who he is.

As if I could make him be anyone else.

This afternoon I took the back road home from the Fermentation Fair hoping I could get a little time with the wild turkeys.  I came across the female of the bunch.  I have never encountered her without her male guard flanking her.  She was in the middle of the street but stopped when I slowed down to chat.  She became obviously distressed and I immediately realized it was because her three chicks were separated from her by a fence and here I was menacing her – she crossed back towards them and I heard her whimper as she tried to find an opening in the fence to get to her babies to protect them from the Vespa dragon.  That whimper of hers was universal.  I’ve made that whimper too when my son got just a little bit out of my reach and a threat seemed to divide us.  Turkeys can fly but they’re reluctant to do it unless they have to and this mama finally had to fly the fence.

I have fought so hard for Max for so long I’m a little shocked that people are finally listening to me.  REALLY listening.  The school is going forward with learning disability testing.  I got a call this week from the speech and language counselor who wanted my permission to include speech and language in his testing because the evaluations that his teachers last year and I filled out indicated some issues but speech and language wasn’t previously included in his battery of tests.  I was confused because Max doesn’t seem to have any speaking issues – the way I went to a speech therapist in school to correct my lisp – but she explained that speech and language are far more complex than issues like lisping which is just one small thing.  Speech and language includes how we socialize, how we use language to communicate, our ability to use it successfully in social situations.  She mentioned difficulties with pragmatic language which I read about when researching NVLD and it made me so happy to have someone at the school paying attention to this.

Meanwhile, Max’s psychologist at Kaiser is going to start evaluating him this week (well, first meeting is with me to go over all his developmental history) in order to determine if he thinks Max qualifies to go to Kaiser’s specialists in San Francisco.

This is what I’ve been asking for, working towards, for 6 years: to get help for my kid.

It’s possible that he won’t qualify for any diagnosis from anyone.  I know this is possible even as I know that my kid is definitely different and that those things that make him different are always going to make it more challenging for him to succeed than his peers in ways they take for granted.  I have to accept possible outcomes.  But knowing when to give up?  Knowing when it will stop serving to be the pugnacious MOTHER-BITCH and turn inwards to discover how we can navigate these deep waters alone… ????

I’m scared.  I’m scared of not getting the help I know we need.  I’m scared that every year I don’t get help and support I’m going to fall deeper and deeper into this alien experience of being the biggest person I know.  That’s not ME.  I can’t seem to crawl out though.  Because all of me is spread out to keep my kid as well adjusted as I can and caring for my mom and trying to be a decent wife and also having to work and trying trying trying to move forward with my own dreams ——

There’s nothing left for self care, for concentrating on getting back to my real body, my real personality, my real life.  It isn’t even as though I have more challenges than most people I know.  I just seem to be weaker than them.  I have a terribly low threshold for chaos, trouble, challenge, brick walls, obligations, or self restraint when it comes to beer and cheese.  It isn’t that my troubles are more so much as it is that my strength is wanting.  I know other parents who are dealing with challenges ten times greater than I am and they find the strength to get through it all and be annoyingly positive.

Fuck that.

I suck at this.

I can beat myself up all day long.  I’m a professional at self flagellation.

I believe in balance.  That’s pretty much all I truly believe in.  I believe that light cannot exist without dark, which means that on every level we need the sun as much as we need the night to give our eyes rest.  It means that circadian rhythms aren’t joke.  It means that there isn’t good without bad.  There’s no such thing as a world without evil.  It means that we are striving for one thing and avoiding another – and the best circumstance is to end up on the median strip.

This is not mediocrity.  This is balance.  A very delicate thing.

It means that as scared as I am, and as fat as I am, and as inadequate as I am, there is another side to these feelings.

I have a wonderfully trusting and close relationship with my son even though he’s launching into those irascible teen years.  He trusts me IMPLICITLY.  Maybe it is going to end soon.  I know this risk.  But right now – no matter how inadequate I may be and no matter that I’m fat as a hog – Max trusts me.  He truly trusts that I am never going to let him down.  Even when I do.  He forgives and his feelings about me remain in tact.  I’m not perfect, I’m a mom.  But he knows at all times that I have his back.  That I love him no matter how mad he makes me, no matter how much he wears me out.  He knows it.  He always knows it.  He knows it and he knows what it costs me.  I can see how bad he feels when he can see me growing exponentially old negotiating life between him and the world.

I didn’t get that trust from him for nothing.  I have worked for that.  I have looked hard at him his whole life – trying not to wear blinders – loving the truth of him rather than my wish of who he might be or become.  I got Max’s trust because I earned it.  I placed trust in him and demanded that he place trust in me too.

So the flip side of my inadequacy as a parent is that my weakness has made me accepting of my child’s foibles, his weirdness, and it has made me love him for who he is instead of who I wish he was.  It has given me an extraordinary closeness to my child that I might not otherwise have.  I’m crap in so many ways but I stand up for Max.  I have become a complete bitch on his behalf.  I don’t feel pride about that – I just know that there was no other way because when I was polite and patient and flexible and compromising I got nowhere, I was invisible, I was unheard.

As I have been so many times in my life on my own behalf.

What makes me a good mom to Max is that I never give up on him.

What makes me a good mom to him is that there is literally no topic we don’t discuss and there is no topic about which I will lie to him.  And he knows this.  And it’s what makes him trust me when I tell him he’s going to be okay or when I tell him I have a solution to a problem.  He has never had reason to doubt me.  It’s what makes him agree to try new foods he thinks might kill him and what makes him go against every impulse in his bones and be respectful of adults he hates for one day – just because I have asked him to do it for me.

Truth is a powerful tool.  Not everyone can handle it.

God, I’m so scared all the time.

Time to shake it off as best I can.  Monday is here.

Reflection over.

 

 

 

 

Parenting: Keep the Shovel Close at Hand

1375065688894

I’ve been filling out questionnaires for Max’s school testing that will commence next month.  Questionaires about his behaviors, his medical history, his social interactions, and his health.  It brings up such strange feelings.  My purpose never changes.  I knew the first time he said he would stab himself to death when he was a toddler that I was going to be filling paperwork out and fighting for his well-being and begging others to see what I see and help me help him.

But being firm of purpose doesn’t mean you don’t experience a full range of emotions while doing what you need to do for your kid.  Evaluating your kid, trying to be as completely honest and as objective as possible even though you can never be objective about your own child – it’s a strange banquet of memories you trawl and sift.  It’s a test of your own ability to separate your child from your skin, from your heart, enough to give solid information.

I think the most surreal thing to me is to be evaluating his social interactions and to know that he sees them so differently.  He was Skyping with one of his oldest and few friends the other day and I heard his friend’s friend say “I don’t much like this Max guy” and then they hung up on Max.  I asked Max if he was hurt by that.  He says “What?”  I said “That kid just said he doesn’t like you.  Did that hurt your feelings?”  He says “No.  Why should it?”

That’s everything in a nutshell.  Max doesn’t  care if people don’t like him.  He doesn’t care if they’re rude to him if he perceives that they’re just being honest.  Because that’s how he is himself.  He doesn’t understand why people get ruffled by the things he says or why people get hurt when he’s honest.  But Max loves having friends.  He just doesn’t keep them very easily.  The few he keeps tolerate his seemingly abrasive political and social rants and his blatantly unfiltered thoughts and opinions without much offense.  It takes a special kind of person to love Max in spite of his obsessive interests and narrow topics of conversation.

I was hurt.  Hearing that kid say he didn’t much like my son was bitter and choking.  I know a lot of people feel that way about Max too who never say it out loud.  He doesn’t feel the slights but I feel them all.  Every single one.  He has so little idea of how much he exacerbates and annoys people.  He only notices and cares about the really loud ones and the people in positions of authority who don’t like him because it has a strong impact on his comfort.

So I can’t be objective.  I know it’s unrealistic to expect it of myself.  Still, I need his issues to be taken seriously and so I have to take my role as observer seriously too.  I have to continue to hone my skill of separating the chaff of my motherly emotions from cool observation that might actually get him the help he needs.

The hardest things to evaluate are things like “Acts strangely” – how the hell can parents as strange as Philip and I judge what is strange or not strange behavior?  We’re the WEIRDSLEYS personified!  I was a goddamned suicidal teen!  Philip was an introverted artist and definite odd-ball.  We couldn’t have married each other otherwise.

This week Max and I have talked a lot about sex and sex-ed as presented in school.  He has many complaints to report.  He says the school talked more about the virtues of abstinence than they did about protection.  He also really hates that some kids his age snicker at the word “penis” and “vagina”.  I’m so happy he’s bringing these topics up.  I’m so happy we’re having the opportunity to discuss birth control and sexuality and what real “virtue” is.

Here’s my distilled stance on sexuality in a nutshell as discussed with my 12 1/2 year old:

  • Abstinence is not stupid if you aren’t ready to have sex and/or you feel it’s important to wait and certainly is a valid form of birth control, IF you can really BE abstinent.
  • There is no greater virtue to abstinence than there is to having careful and protected sex.
  • Sexuality isn’t a contest of virtue, it’s a natural human urge and action and there is no shame in being a sexual being.

It is irrelevant how many sexual partners you have or don’t have.  The most important thing is this:

  • Honesty.  Be honest in all your sexual relationships.  Be honest about what you want, what you’re about, whether you’re just wanting sex or you’re open to more.  Don’t cheat on a partner.  Don’t make promises you can’t deliver.
  • Safety.  Unless you are in a long-term serious relationship – always protect yourself with a condom.  STD’s are real.  Some are just uncomfortable nuisances while others can kill you.  Unwanted pregnancies present young people with impossible choices no matter what your politics are.  Always take precautions.
  • Consensual actions.  Never ever force another person to do things they’re uncomfortable with doing no matter how much you want them to do those things.  When someone says “no”, even after having said “yes”, it’s time to STOP.  Likewise – never let anyone pressure or force you to do anything intimate you aren’t completely comfortable with.  You always have the power to say “no”.
  • I am always here to talk to and I will not judge, I will only try to help and protect and heal my child/teen/adult.

We have discussed so much this week.  I used to dread the time we would have to have these talks.  Now that the time has truly arrived I feel up to the task.  We have fleetingly discussed masturbation (how it’s healthy and normal which he already knew) and how even if you believe in a woman’s freedom to have an abortion it is still, for most women, a dreadful and emotional choice to have to make, and the difference between a healthy libido and a slut.

We discussed how “slut” is a pretty charged and judgmental word to use.

We discussed how it’s okay to have a strong libido if you:

  • Protect yourself.
  • Respect yourself.
  • Respect your partners.
  • Remain honest at all times.

We discussed douchebaggery.

There’s not a lot more I can do and yet there’s so much ahead of us.  I’m haunted by my need to protect him and to simultaneously set him free.

I know what I know in my gut.  My gut has yet to steer me wrong.

Stay the course, keep the shovel close at hand.