new problems

So, for those of you who may not know, my twelve (soon to be thirteen) year old daughter with autism started at a new school in September.  All her educational life from age three to twelve was spent in the same program specifically designed for autistic children.  It was a WONDERFUL program, but she was doing so well and progressed so far that she didn’t need their intense services anymore.  We were scared to make the change, to leave the nest, but we knew it was time because she was really starting to be held back from blossoming where she was.

She has transitioned marvelously in her new school.  It’s a regular school, but she is in a self-contained special education classroom, with inclusion for art, music and gym.  She goes to homeroom with other “typical” children in her grade and has her inclusion classes with those same kids, so she’s finally making a few casual friends outside her special ed group.  She has girls to chat and giggle and have lunch with which has been really nice for her. She is very happy.

HOWEVER…

In this new school, just because she is in a self-contained special education classroom no longer means that her classmates all have autism.  I don’t know what the problems are for any of the other kids in her class.  I don’t mind that BUT…

Two of her new girlfriends (in her class) are MUCH more tech savvy than she is.  They want to go on Oovoo and video chat, which is okay with me, but I had to help my daughter get their usernames and add them as friends, and even how to use it (which I have to repeat with her every time).  She really doesn’t “get” that stuff.  They want to call and talk on the phone, which, again is okay with me, but last week one of the girls called at 10:30PM – on a school night!  I had to explain to this girl that my daughter had gone to bed, then the next day tell my daughter that she had to tell her friend NO calling after 9pm.  Then my daughter asks if she can go with these girls to “hang out” at the local plaza after school.  (Um… NO WAY.  My daughter barely knows her address and wouldn’t have the vaguest worry if a stranger came up to her and offered her a ride.  Me, let her go unsupervised with these girls to a plaza?  NOT ON THIS GOD’S EARTH.)  But she says they go there to hang out or shop, and at a local park too.  And they all have cell phones, which I confirmed with the teacher (she may not be able to share personal/educational information about these girls with me for privacy reasons, but she did confirm the cell phone thing).  We haven’t gotten my daughter a cell phone yet because:

1. she BARELY knows how to use a regular landline phone and
2. she has never been without direct adult supervision so has never needed one

It seems to me these girls are much more “normal” or “advanced” (for lack of better terms) than my daughter (although I wasn’t letting my twelve year old “typical” daughter go hang out at the local shopping plaza either).  Clearly they are more independent.  I wonder if their problems are simply academic and not mainly developmental (which I can’t know for privacy reasons).  This has left me a little scared and confused and worried.  I WANT her to have friends.  I WANT her to integrate as best as she can with other kids her age.  But her ability to be independent is limited.  Her ability to understand the clever deception of a stranger trying to take advantage of her is NON-EXISTENT.  Her ability to perceive danger is limited to only the very obvious.  She is extremely trusting.  She has very little understanding of money and so shopping with the girls would be a disaster.

I did offer to go to this plaza WITH her and “hang back” and watch out for her while she’s there with her friends one day, and she seemed okay with that, but then it rained and they didn’t go, and they haven’t set up a new time.  We have also talked about getting her a cell phone for Christmas (she is actually BEGGING for one).  Nothing fancy, just enough that she can make calls, texts and have an app or two.

I thought it would get easier as she progressed in her development, but the truth is, right now, that it’s feeling much harder and much scarier.  Autism, once again, is keeping us on our toes…

expectations

Parents who live in Autismland know a lot about expectations.

• You learn very quickly that your children need to KNOW what to expect in any given situation (although that’s practically impossible).  Surprises don’t go over very well for most people but for children – and adults – with autism, surprises are literally like earthquakes, shaking their world, making everything uncertain and fearful.  Surprises aren’t just unwelcome, they’re downright frightening and a recipe for disaster.
• The other thing you learn about expectations is that while you do your best to prepare for every contingency, your kids – and the world in general – will trip you up.  In other words, we learn to “expect the unexpected.”  You plan for every conceivable thing, and the ONE thing you didn’t plan on is the thing that happens.

Welcome to the insanity.  You need to know what to expect, yet you really can’t – and – you prepare for everything you “think” you can expect, but you can’t.

It’s LIFE.  Even for the best of us it can be rough.  But for kids and adults with autism, and for their parents and families the stress at times can be unbearable.  I would guess that the vast majority of autistic meltdowns have to do with the unexpected: unexpected places, unexpected people, unexpected noises, a change in the expected routine.

And you know what, this craving for the expected, for the routine, rubs off on parents.  And this, like many other aspects of autism, impacts the whole family.  I like to consider myself a “go with the flow” kind of person, but when it comes to my autistic daughter, if I don’t have everything “just so” I get almost as anxious as she does.  When it comes to her, the expectation insanity stresses me considerably.  As a result, at least with anything that will impact her, I become almost as dependent on expectations as she is.

So…

My daughter is starting in a new program in September, which is a good thing.  She no longer needs the intensive services she’s been receiving in her current program – a program she has been in since the age of three.  In the spring my husband and I toured the school where she’ll be going.  On another visit my daughter and I went along with her current teachers.  Problem is, the class she’ll be a part of is a newly created class – one that doesn’t exist yet.  Demand has created this class, and while I’m thankful the district is responding to the needs of the students, it’s left a lot “up in the air.”  Up in the air is bad for my daughter, and as a result, bad for me.

Who will her teacher be?  Last I heard they were still in the process of hiring.  Where in the building where her classroom be?  She’s been to the building, but wants to know where her class is and I can’t tell her.  Who will be in her class?  Don’t know.  We might know two children, but nothing official.  She takes the bus TO school (I pick her up in the afternoon).  At her previous program, staff would be at the bus door to escort the kids to their room.  In the new program she will be responsible for getting off the bus and to her class – – but she needs to LEARN this routine.  I cannot let her get on the bus on the first day of school without HER knowing where she has to go and how to get there.  My daughter is not a wanderer (thank GOD), but if she doesn’t know where she’s going, she might get lost.

So many questions.  School starts in just over a month and we do NOT know what to expect.  She is asking me all the questions, and I have no answers.  This makes her anxious, which makes me anxious.  I’ve given the school the month of July to figure things out, but as we’re approaching August (when ALL the special education staff take their much-deserved vacations), I see myself spending A LOT of time on the phone trying to get as much of this sorted as possible.

Change is hard, because expectations…

a new step

It’s official.  My twelve year old daughter will be leaving the special education program in which she has participated since the age of THREE.  I signed the amended IEP (Individual Education Plan) this morning. The reason she’s going to a new school is that those who have worked with her for years believe she no longer needs the intensive services their program provides anymore.  This is good news, GREAT news. We are SO SO proud of her!  But it’s also a bittersweet moment – even though it’s been in the works for a few months now the “official-ness” of it has me feeling nervous and nostalgic.

My daughter entered this program geared towards children with autism two weeks after her third birthday.  The day she walked in that building, into the hands of those strangers, out of my sight and my protective arms, I cried me a river.  Not the typical tears of a mom seeing her child off to school and letting go and grieving the baby growing up – I cried because I was AFRAID and anxious.  I was afraid and anxious because she hardly spoke a word.  I didn’t know the people she would be with, so I didn’t trust them.  I was afraid someone would hurt her and she wouldn’t be able to tell me.

Nine and a half years later, I’m anxious again, but the fear isn’t quite as great.  My daughter who hardly spoke at three won’t keep quiet at 12 1/2!  While her speech isn’t as smooth as it could be (she still gets speech therapy), she can clearly convey what she wants, what she needs, and if she’s having a problem. My husband and I got to choose from three different schools, and I know we’ve picked the one that will best meet her needs.

But leaving this program is like pushing the baby bird out of the nest.  These people who I so distrusted at the start have become like extended family.  They have celebrated our failures, held my hand as I cried in frustration, came to our home to help us coordinate how we would handle a newborn (my son) when my daughter was still so “wild.”  When things at home were particularly overwhelming, a few of them offered to spend personal time with her after school, so I could have some time alone with my other two without the chaos of their sister.

When the idea of her leaving the program came up at her IEP meeting in February, the first thing I did when the meeting was over was call the program’s director.  “I’m nervous, talk me down!” I said to her. She replied, “We love her, and we don’t want her to leave us, but we don’t think she needs us anymore. We can’t hold her back.”  We can’t hold her back.  Amen.

But new is hard.  She’ll have a lot of transitions and adjustments to make – new building, new teachers, new classmates, new schedule, new classroom rules, and having a locker for the first time.  Her teacher and behaviorist firmly believe she is up to the challenges of the new school.  They, along with her case manager, have assured me that she will have extra help for how ever long it takes to get used to things. And there are certain things they won’t wait until September. During her extended school year (ESY) in July they will start working with her on some of the transitions.  We all want to make sure the change is as painless and anxiety-free as possible.

But new is hard.  I reflect back on how incredibly far she has come, and I am so very grateful for all the people who have worked with her – from Early Intervention (EI) when she was just one year old, to the program she’s been in from three until now – teachers, aides, speech therapists, physical therapists, occupational therapists, behaviorists and case managers.  I’ve said it before and I’ll say it again, THEY ARE ANGELS.

New is hard, because it means saying goodbye to all those angels, and somehow believing there is room in our hearts for all the new people who will become a part of our lives – trusting, with only the past as proof, that they too will become as instrumental to her success and happiness as those who have come before.

Uncertainty in autismland

MOST people with autism function best when they have structure.  They do best in a routine.  Ask almost any autism parent what they dislike about school vacations and you’ll probably hear about how the lack of routine sets their kids “off.”  For many, school vacations have to be planned with military precision so that “down time” is limited, and this makes vacations exhausting for parents!  Parents of folks with autism also do best when their kids have a routine (that works!).  If we find a program or a routine that works for our kid WE DON’T MESS WITH IT!

Well, change is coming for my family and I’m feeling some pretty intense anxiety over it.  The program my daughter has been in for NINE of her twelve years is telling us she’s “outgrowing” it, that she needs a placement that will encourage her academically and socially.  She is in a “regular” school, but in a special education classroom, with opportunities for “inclusion” as she’s able.  She goes for inclusion with an aide for art and music (chorus), and just started gym.  In her class she is held up as the example for the other kids for behavior.  If she continues in her current program she will be with other children who DO have behavior issues, and she will continue to be the ONLY girl in her class.  They love her in this program, but they want more for her.  But it’s scary to leave these folks that met her as a barely verbal 3 year old and have helped her become the beautiful friendly 12 year old she is today.

My husband and I have begun exploring new programs for her, and we got a look at the first one today. Some things got me excited for her, some things really scared me.  The reading level of the kids in the class is right where she’s at, and there’s a GIRL!  Woo Hoo!  The teacher explained that they work very hard to provide the girl in the class with opportunities to be with other girls in the school at lunchtime and for inclusion areas.  Girls that are “good” for her, and said she would continue that if our daughter joined them.  She would be THRILLED!  There will probably be 6 kids in the class next year and no one with serious behavior issues.  They do well with only ONE aide!  Amazing!  That’s the exciting part…

BUT… there were scary parts too.  She would have a LOCKER with a combination lock!  Many times she uses two hands for a doorknob, so I’m concerned about her having to twist a combination lock to the precise numbers.  She will enter the school, go to her locker to drop off her coat and lunch, then get to her class in the morning ALONE.  She’s never done that in her whole life.  She’s always been greeted at the bus door by an aide, who has walked her to her class.  Never had a locker.  Scary.  Almost all the kids in this class attend a regular 7th grade math class a few times a week, and my daughter could never do that in a million years.  She’s still trying to master basic addition.  The teacher assured us that that could be worked around so as not to be isolating for her – maybe using that math time to schedule her speech therapy…

We left the meeting and class observation hopeful and concerned at the same time.  I immediately signed a release so that this possible new teacher could speak to her current teacher, so they could assess if my daughter is functioning well enough academically to integrate into this class.  That’s the real issue – we want to challenge her to reach her full potential, but we don’t want to set her up for failure or have her self confidence crushed.

There are two more programs for us to look at before we make a decision about next year, and each have their drawbacks.  The first has NO girls, which is a huge strike against, since that’s one of the issues we’re trying to fix.  In the other her case manager said the children are lower functioning, not even able to participate in state testing (which my daughter is able to do).  So, our options are 1) a program which we would have to make sure isn’t “over” her head, 2) one where she’d be the only girl, and 3) one where she may not be challenged enough.  ugh.

NOW…  I “thought” my husband and I agreed we weren’t going to say a word to our daughter until we had a concrete plan.  That’s why we haven’t talked to her about it yet.  But when she came home from school he spilled the beans that we had gone to this place for a tour and maybe she would go there next year.  WHAT THE EVER-LOVING HELL!!!!!

ARE YOU NEW HERE?????!!!!!!

So the questions have started:

• So I’m going there?  No.
• Where am I going?  I don’t know, maybe there, maybe somewhere else, we don’t know yet.
• Why don’t we know yet?  Because Daddy and I have to look at other places.
• What other places?  _____, _____, _____.
• When will we know?  I don’t know because we don’t have appointments yet.
• Why not?…
• etc…

Like I said at the beginning, the kids do best when they have structure and routine.  Part of that routine and structure is knowing what to expect.  This uncertainty about next year is hard enough on my husband and myself, for her (who has a distorted sense of time) it’s even worse.  I wish I could say I’ll just push all her questions on him, but he works a lot and I’m the one home so…  I think I’ll have a glass of wine, and think of ways to get back at my husband for the torture this will be for both me and my daughter till it’s resolved.

change

A few days ago I attended my autistic daughter’s quarterly parent/teacher conference.  It’s a time when we review the goals in her Individual Education Plan (IEP) with her teacher, Occupational Therapist, Speech Therapist, Behaviorist and Case Manager.  I call them her “posse.”  🙂  I LOVE these meetings and I LOVE her posse.  I feel like they really care for her, and for our whole family.  Some people have terrible relationships with their kids’ teachers and child study teams, some people have had to sue their school districts to get services, but with the exception of ONE meeting in the past nine years that my daughter has been in the system, my relationship with these folks has been very positive.

At this meeting they surprised me, and I’m still trying to process it.  I sat down expecting a normal conversation about how she’s doing – instead I got a conversation about the possibility of her being placed in a new program next year.  Her yearly IEP meeting is at the end of next month, and her case manager feels a change of program might be beneficial for her starting the next school year.  She wants plans resolved for next year by the time of the meeting so it can be worked into the new IEP.  I was in shock.

I told them I didn’t understand what all this was about, and they explained everything to me in a very calm and logical way.  And what they said makes sense.  Two months ago she became the only girl in her class (when a classmate was transferred for reasons they couldn’t share – privacy laws…), and when looking at the make-up of what “would” be her class next year, she would be one of the higher functioning students, and really the only one without behavior issues.  I started to feel panicky, like they were going to push mainstreaming, so in the calmest way I could, stopped the conversation and expressed my concern that mainstreaming would be a DISASTER.  Her case manager reassured me that in no way were they considering mainstreaming – at the very least they knew it would be inappropriate for her academically (She is not “grade level” in any subject).  Her case manager reassured me she would still be in a self-contained classroom, but that they felt she needed a setting that would give her a different mix of students with more of her social abilities, who could also encourage and push her social skills AND academics.  I couldn’t argue with that.  Her case manager is going to research different programs, and then my husband and I will have a chance to see them and must give our approval first if we find one we like.

THIS IS A GOOD THING.  I keep telling myself that.  This means that she’s progressing out of her current program.  It’s a WONDERFUL thing!  But I’m scared.  In the autism world we talk a lot about our kids’ aversion to transition and change, but truth be told, we parents don’t like it much either.  If we’ve got our kids in a place we TRUST, where we know our children aren’t just being taught the abc’s but are also being CARED for, we’re not going to be giving out high-fives when told there might be a better deal out there.  My daughter has been in this program since she was THREE (she’s 12 now).  And I know some of these people like family.  They are family.  They have been such a supportive community for us over these many years and leaving them will be like leaving the nest – being pushed out into the great unknown and hoping we can fly.  This is a GOOD thing, right?  Did I say I’m scared?