When the "Least Restrictive Environment" May Be Causing Harm

Have you ever had a complete aha moment as a parent?

 No one ever gave me a guidebook for my kiddos, and as Jack’s BCBA pointed out last night when we were talking, even if they had, it would have been the wrong one J.  I have been struggling so much as a mom with Jack’s behavioral issues, both at home, and particularly at school.  How did he go from being a “pleasure” at his old school to a constant behavioral problem at his new school?  Did they withhold information at his old school or sweep issues under the rug?  Or are they antagonizing him at his new school?  I have come to the conclusion that it is likely somewhere in the middle.  I know that at his old school, they had known him for years, and likely did brush some behaviors off as just “Jack being Jack.”  But I also feel that things are moving in the wrong direction at his new school as well.

So why? 

What am I missing?  I felt like I was so careful to find a placement for Jack that would keep him in his least restrictive environment, allow him to interact with his typical peers absolutely as much as possible.  I felt strongly that this was what he needed because he had such good relationships with his peers at his old school.  I think I may have been wrong.  I forgot some very important factors.

I feel like an idiot- because I couldn’t see the parallels between my son and myself until last night.  I focus so much on his autism that his anxiety, particularly his social anxiety becomes very secondary.  But anxiety is the thing that he and I have most in common.  Particularly in social situations.  See, I understand fully his desperate need to feel accepted, to feel a part of things.  I understand just how heavily perceived rejection weighs on him.  Because I feel the exact same way.  I faced a huge rejection several years ago and it was quite literally one of the hardest things I have ever dealt with in my life.  It has taken me years to be able to just sit with it, accept it, and not allow it to overtake my thoughts on a daily basis.  And I am a grownup!

At Jack’s old school, he had friends.  The kids and staff knew him; they understood his challenges and knew that he was fundamentally a good kid.  Were bad behaviors really ignored?  I don’t think so, I think the emotions behind them were just known, accepted, and dealt with appropriately.  His peers loved him for the most part.  This is why I thought it was so important for him to stay among typical peers in his new placement.

I left a huge piece of the puzzle out of the mix and didn’t even realize it.  The new staff and the new kids are never going to accept Jack the way he was accepted at his old school.  They don’t know him, and they are honestly not taking the time, or making the effort to “learn him”.  Entering a new peer group as a child like Jack at an older age is an entirely different experience.  8 and 9 year olds are much more aware of social differences and behaviors they might consider “odd” than kids were in kindergarten.  They react very differently to Jack than the kids at his old school did.  And here’s the thing- he notices.  He feels it to his core.  He feels rejected, and he feels targeted.  So what happens?  Fight or flight.  This is already overactive for him (and his mama)- and this perceived rejection only ramps him up further, or as his new math teacher says “jacks him up” (ha).  He goes on the defensive, which becomes offensive to others.   So his behaviors escalate- they remove him from class- he feels rejected- he acts out, and on and on. 

 I received a call from his principal earlier this week telling me that they would like to begin to pull him out of class for science and social studies, which were the only academic areas in which he was mainstreamed.  I get why they are doing this- with his current behavioral patterns, he is disruptive in class, he is getting nothing out of it, and he is taking away from other kids’ learning experiences.  In the long run however?  This is doing even more damage in an already difficult situation.  More rejection from his point of view.

 

It is difficult to talk with Jack about school.  Lately he comes in the door literally saying “I don’t want to talk about my day”, which means of course, his behavioral sheet is going to be not so good.  I have been able to peel the layers away a bit just in doing things like taking walks with him, or sitting with him at bedtime.  His offhanded comments have led the way and I am starting to see things from his perspective.  Small things like “no one laughs at my jokes anymore” (like they did at his old school), and “I just feel left out”, and “it just makes me so angry”.  I don’t think it’s the academics that are causing his struggles anymore.  Most of what he is feeling is social and it is the biggest burden of kids with “high functioning” autism.

He can detect social rejection, and has no idea how to handle, or remedy it.  He wants peer relationships, craves them.  With Nate, he honestly could care less at this point, and so going in and out of “typical” classes and back to his autism classroom works rather well.  It is the least restrictive environment as it is intended.  I am starting to think that the least restrictive environment situation we provided Jack with is actually restricting him more than a technically more restrictive environment would.  In saying this, I mean that I think he might function better in a setting that is special education oriented, where he would be “among his peers” all the time, but his peer group would be different.  In a place where he would feel a part of things and accepted all the time, instead of constantly feeling singled out, pulled out, and in his mind rejected.  Maybe going to a private special needs placement (with on par academics) makes more sense for him and his sense of well-being.  Maybe I was focusing way too much on keeping academics at the forefront, when in fact, that is not the biggest area of struggle.  We received his report card and IEP update yesterday- his grades have gone up a full letter grade in the small group setting even with all of the struggles he has been having.  He is making “sufficient progress towards goal” in all academic areas of his IEP.  The only areas in which he is not making adequate progress are his social-emotional goals.  I think that is very telling.  We have another IEP meeting on May 17th and clearly we have some things to address.

Great Expectations

When you have your first baby you plan and plan and plan- or so you think. You will do everything "right" and your child's life will be ideal.  Cue reality.

Our reality has been a huge wake up call.  In the beginning it was really hard for me to adjust my expectations.  Jack started out so "advanced" with so many things that when I started to realize he was behind in other areas it was really difficult to stomach.  Add into that my rule follower, high achiever roots- yeah it was a challenge for this mama.

Things that have happened over the past month or so- things that have made my heart SO HAPPY, have made me realize just how far I have come.  

Jack started out on a rough path at his new school.  Weeks of behavioral spikes, refusing to do work, not getting along with peers.  It was terrifying- the constant calls from school- it got to the point where every time they called I thought they were going to ask me to come pick him up (they never did).  Even the bus driver was having issues with him.

What a turn around we have seen.  I guess my appreciation for this can go back to my last post about Nate- it took going through this darker period for me to appreciate the positives that are coming our way now.  

He is bringing home countless COMPLETE and CORRECT assignments.  Up on the fridge those bad boys go- he has never had this experience of consistent success in school before.  If it makes me feel this good I can only imagine what it is doing for his confidence level.  

Doing homework with him has become a completely different experience.  He may complain about it intermittently but compared to the past- when I would be constantly asking him just to look at the paper, it is a cake walk.  And he writes it!! Can't even begin to explain what that is like- he used to limply hold his pencil in his hand and tell me he was not capable of doing it.  

Then this week he had his third grade musical, "science rocks".  I thought they would stand up there and sing a couple of songs- 45 minutes into it I realized this was much more involved than that.  This type of event has always been a land mine for my firstborn.  The noise, the crowds, the expectation to stand still and follow directions.  The APPLAUSE.  Just the clapping alone used to send him into a tailspin and inevitable meltdown.  His dad and I were basically gripping our chairs at the beginning and praying (that he would do ok and that it would end- soon).  My son.  My sweet boy.  Made it the entire way through, and made an effort to sing every single song with a smile on his face.  Did he get the (very involved I might add) hand motions correct?  Not on your life!  Did he have periods where he couldn't stop giggling and the proper little girl standing next to him (she reminded me of myself when I was their age) was constantly jabbing him and telling him to simmer down?  100%.  For the first time in my life as a mom- I didn't worry- I actually wanted to tell the little girl to chill out- kind of symbolic I'm thinking 😜.  He even made it through the science fair awards and the once again constant applause.

I imagine most of the parents who attended this adorable show went and thought it was cute and enjoyed it.  I ended the successful evening in tears because I couldn't believe what my baby had achieved.  

When Your Child Is Special

While I am a special needs mom, that's not what I mean today.

I am talking about how special my Nate is- what an amazing little individual I have in my life.  I was sitting with him today out at lunch after a particularly successful haircut and I just had to stop myself for a minute and stare.  He is so gorgeous.  Sometimes it feels like every single thing he does has just a little magic involved 

He is just a perfect little soul.

There is an element of this feeling of awe that DOES involve autism.  I am not one of those parents who counts autism as a blessing.  But it did give me a gift.  It gave me the gift of seeing my son "return" to me.  With the absolute devastation that came when he stopped talking to us, stopped looking at us, started banging his head against the walls, came the complete joy of seeing him respond to his name, attempt to say words, jump on his exercise ball rather than engaging in self harm..

Sometimes it really does take losing something to understand just how precious it is.  Jack was an "early talker".  I can still remember a mom in our play group looking at me completely deadpan and saying, "did your 15 month old just say vacuum???  excuse me while I go shoot myself in the head!"  (she's probably cracking up right now).  I was a first time mom, I completely took Jack's speech for granted- I had no idea just how amazing it was.  Honestly, I would've been happy if he would've simmered down for a minute- pretty much all the time.

And Nate started out slower, but developmentally appropriate.  He was still on track when he received his vaccines in June at about 16 months.  I am not trying to blame vaccines, but it was at that visit that he received a standard developmental screening- he was pointing, he had enough words, he was playing with toys.  And then he wasn't.  I guess you can take that however you want.

When your child, who is supposed to be exploding with new developments, loses the skills he has and checks out- there just isn't even a word that encompasses those feelings.  Terror- maybe.  But grief is in that mix, so I guess not.  Let's just say it's life altering.

Anyway, I don't want to relive all of that, but it's kind of crucial to the story.  In regaining skills, starting to explore his world, interacting with those around him, Nate has become my own little personal daily miracle.  Every single thing he does amazes me- and I can read him like very few moms can read their kids.  Because we had to do it without words for YEARS.  It was actually a huge challenge when he started ABA, me withholding things and waiting for the word, because I could literally always see in his eyes what he wanted and needed.  We had developed our own system, and I would have to say I was the only one who could read him like this.

I am starting to be able to share that with others, because he can now go into school and communicate his needs- generally only the very basic ones, but it's such a step up...apparently last week at school, he went to the bathroom while in gym and walked down the hall announcing to everyone "I pee, I pee."  Seeing this little personality that I have always known was there emerge and be noticeable to those around him is just thrilling.  

He has spunk, he has a little attitude, and I'm convinced that his sense of humor is just as sarcastic as his mama's.  The amount of eye rolling that goes on in this house is just hilarious.  His curiousity is starting to really emerge- he will literally move my mouth just to see me talk and watch how I form my words- this is so cool to see...

He is starting to "joke".  He finds himself (and his ability to make others do things) hilarious.  He is beyond loved everywhere he goes- he has his therapists, teachers, and family wrapped around his little finger.

In short, this little boy is my hero.  I am so proud of how far he has come, and I am so hopeful about where he is headed.  I could not have said any of that two years ago.  I was too absorbed in my own grief to realize how many wonderful moments were headed my way.  I am learning, through this child to appreciate the little moments in a way I never understood before.  I have learned that every single step for him is huge, and that he can go way further than I had realized...

I LOVE this boy!!!!  He brightens every single day of my life.  

A Cause Near and Dear to My Heart- Please Read!!

If you are reading this, you either know and care about our family, or are affected by autism in your own daily life.  Either way, you have some personal knowledge about the affects that autism can have on a family.  I talk quite often about the day to day emotional struggles that we face- but the fact of the matter is that financial issues have just as much of an impact.  This is true for pretty much all autism families.  There are few other serious diagnoses out there that have treatments and therapies so significantly limited by a family's personal finances.  If our children had other medical diagnoses, or genetic disorders, they would qualify for services, and likely medicaid rather quickly.  With autism, Maryland has the "autism waiver", which offers a limited number of slots for special services provided to kids with autism- we have been on the wait list for approximately 6 years now.  When we first started on this journey, we felt so limited in what we could provide for these kiddos- our insurance covered 50 therapy visits A YEAR.  OT, PT and speech COMBINED.    We could take them to (in-network) developmental specialists and get them diagnosed 500 times a year (if we were nuts), but the treatments these specialists recommended were completely out of reach for us, and we are a two income family, albeit one with two children in need of services.  

I could spend this entry perseverating about the things we have not been able to do because of lack of funding- there is much that I could say, and have said on this issue.  But that's not where I am going with this.  

There are sources of help, sources of funding out there for our children.  About two years ago, such a source came into our lives and changed things for the better.  We became aware of Avergan Foundation  http://averganfoundation.org/  through the special needs preschool that Nathan was attending.  We were drowning in debt trying to pay for this program that our son needed.  There was of course little to no funding available for this type of program, and the cost of it would quite frankly make your head spin.  When it comes to your children?  Your son who is 3 and non verbal?  That hardly matters.  You want your child to function, to thrive, and will do just about anything to make that happen.

To put this in perspective, here is Nate, at age 5- for weeks this program worked with him on a "wish" his mama had for his 5th birthday.  I wanted him to blow out a candle.  This may sound frivolous to some, but these milestones that we as parents miss out on- they mean so much. 

And here is a mama's wish coming true....

It is true what they say, fighting so hard for these small accomplishments makes them mean even more.  Avergan helped fund Nathan's attendance at this program for nearly a year, while also funding his private speech sessions with a speech therapist who truly understands his needs...

After all they did to help support our family, I found myself volunteering at all of their events, wanting to be involved, wanting to give back.  So recently, in a moment of insanity, I joined the board.  As tied up as I am trying to provide the boys with what they need- at this point, I am proud to say that I think they kind of have it...we are in a good place service-wise.  There are many other families who are not.  And they need help.  They are where I was 5 years ago- and it's not a place anyone should have to stay in!

So here I am, a mama with (another) cause.

Avergan Foundation is having an event called "Art For Autism" on April 23rd to raise money for these families, and we need your help.  If you are an autism mom (or dad), we need your kiddo's art!  If you are a business owner, we need your sponsorship!  And if you are my friend, or family, or care for these children we are working for, we need you to come out to the event.  I will be posting more information as the date gets closer, but here is the link to the event

http://averganfoundation.org/our-events/art-for-autism/


Please consider getting involved in whatever way you can- if I can find time, you can too!!!

And just look at these faces.....

Not trying to sway you, but you know, they are kinda cute ;-)

Caregiver Burnout is Very Real

About a year ago, my employer, being the forward thinking organization that it is, hosted a teleconference for employees on compassion fatigue and caregiver burnout.  I of course could check almost every symptom box on the list of possibilities.  That being said, I have a very difficult time accepting that I feel this way, and that it’s not necessarily a personality defect.  I have always been a “carer”, and the thought that I essentially have nothing left in the tank and need to tell people I’m full up?  Well, it feels like failure to me. 

http://www.webmd.com/women/caregiver-recognizing-burnout

 

I became a nurse (gulp) 16 years ago.  It was the most natural thing on earth for me.  I studied biochemistry in college and accepted a research internship with a pharmaceutical company.   I did this full time for a semester and by the end was ready to emit a primal scream.  The lab- silent.  The petri dishes- did not answer me!  This particular lab was particularly stifled, not even music was allowed because apparently the researchers could not agree on a genre.  That was all it took for me to know that this was not to be my path in life.  I needed people; I needed to help people directly, not by isolating something under a cell culture hood!  When I returned to school I changed my major, transferred to Hopkins and the rest is history.  I chose oncology, bone marrow transplant as my area of practice.  I loved that they utilized primary nursing and that we functioned in and rotated between the outpatient and inpatient setting and also could transition patients and keep them when they required ICU care.  This resulted in nurses knowing their patients for months, seeing them daily, and unfortunately sometimes seeing them come back again and again for years when they relapsed or had complications.  It was definitely emotionally draining.  It was also incredibly fulfilling.  About seven years in, I needed a change.  I had had a string of wonderful patients pass away and to be honest, I was burnt out.  Also, I think God had a plan for me- I accepted a position as a transplant case manager with an insurance company- and made the eventual possibility of working from home a condition of my employment.

About 6 weeks after I started my new job?  Pregnant.  And then along came Jack.  I truly believe that this job is one of the key reasons that I have been able to do all that I do for the boys.  God put me here so that I would be able to be the mommy I need to be.  I was here through the boys’ infancy; I could nurse them on demand with the help of an in home daycare provider.  It was hectic- there were lots of interruptions, but it was worth it.  Little did I know what was coming with the boys- that this was by far the easy part.

With each of the boys’ diagnoses things became more complicated.  As their mom, it was my job to do everything and anything I could to help them- I have been through more assessments (and depressing discussions) than I care to mention, I have taken each of the boys through multiple clinical trials that eventually required me to take FMLA to preserve my employment, I have taken every Friday off for months to take my son to mother-son speech program.  We now have in home therapy every day of the week Monday-Friday from 4-6pm.  While I am still working.  As I have said, I am extremely thankful that I have the job that I have, because otherwise, the boys could not have this.  And I try to focus on that. 

 Parenting two kids with autism is incredibly fulfilling- and unimaginably exhausting.  I think that one of the hardest parts, a part that many on the outside looking in may not even realize, is that there is no true treatment roadmap for our kids.  And there is no one central to turn to, to tell you what you need to do for your child.  Instead there are about 20 cooks in the kitchen, all with different suggestions, different ideas, and you, as the parent, are left to sort it all out.  Are you going to treat your child medically, assume that there is some type of underlying physical issue contributing?  Are you going to focus on behavior?  Are you going to focus on sensory issues?  IEP’s?  Couseling?  Equine therapy?  Music therapy?  Vision therapy?  Well, the jist is that no one can tell you what is going to actually help.  All modalities have “evidence” that their methods work.  How do you choose?  Can you do it all?  Well I’m here to tell you that I have tried.  I have tried to continue working full time and providing all of these things for the boys.  Is it possible?  Well, what are you willing to sacrifice?   Your Sanity?  Well-being?  Your family life?  Your marriage?  These choices are no fun, they are actually quite terrifying.  And there is no way to know if you are making the right ones

My job no longer involves face to face, physical caring of patients.  That does not mean that I am not still caring for patients.  I spend hours on the phone with my patients now, and am a bit of a jack of all trades.  I review their clinical information and determine if they are eligible for a transplant, yes.  That is one of my main jobs.  But after this initial step, I call these patients, establish professional relationships with them and help them with everything from finding transportation to appointments, getting their medications, explaining the transplant process, helping them find a transplant center that will accept them, monitoring their rehab attendance if there are substance abuse issues, to figuratively holding their hands when they are feeling low, helping them find a caregiver when family members fail to support them, and listening to them express their doubts about moving forward with transplant, their thoughts about dying.  All while being recorded, ha.   And being called by my son’s school daily as he adjusts to his new placement, being asked to get on the phone and “motivate him” to work. 

I am lucky to have a partner in this- my husband.  The reality of the situation is that he now works an hour from home, so I am on my own with all of the daytime issues.  The fact that I also have a full time job is irrelevant, as he is too far away to assist.  And I have NEVER discussed this before- but my husband is also chronically ill.  I won’t go into details, but I will say that his illness leaves him incapable of helping a fair amount of the time.  He is busy trying to keep his own health in check, as he should be.  

I find myself yelling at my husband for being sick.  I find myself not responding to my friend’s calls and messages, actively avoiding them even.  I find myself looking forward to work, because it is my break.   I find myself running until I am completely numb, both mentally and physically.  I find myself locking my bedroom door for 20 minutes so that Jack can’t come in and talk about planes- not that it helps, as he is content to continue his monologue through the door.  I find myself breaking down every time Jack has a meltdown and becomes physically aggressive- and I need to focus on him, I need to remain calm, I need to follow the plan the behavioral therapist has in place.  But with all of the above that is going on, all I can think is, now he is hurting me.  How can this be?  What have I done wrong?  What is wrong with ME?  This one change to the status quo has all but cracked me- it is the proverbial straw that broke the camel’s back.  I can handle a lot.  I DO handle a lot.  But lately, it feels like it’s just too much.  I end the day so exhausted, so overwrought, and so empty.  I often wonder how I will make it through- each day feels like it's own individual battle.   I wake up in the morning and brace myself for all of the unknowns that are about to be lobbed my way. 

 

So what happens in the face of other stressors when one is already feeling like this?  I am told my work hours are going to be changed, that it is mandatory- ok, whatever.  We have a financial problem- mkay.  House crumbling around us?  No biggie.  Get yelled at at work?  Oh well.  I have no ability left to mount a response to these things that seem so mundane these days.  And maybe under the circumstances that’s a good thing- it’s definitely a protective thing.   I am numb to so many things- my patients at work don’t really affect me the way they used to- I care, but I don’t.  I do my job, it is my JOB.  But the passion?  It’s gone.  The compassion?  Well, I can fake that.  I am hanging on by a thread, trying to remind myself that if I made it through Nathan constantly banging his head on the floor and standing on his head, I can make it through this.  But fatigue?  Burnout?  Doesn’t even begin to describe it. 

 

Nate- development can lead to new challenges

I haven't talked about Nate in awhile.  He has been doing very well.  He has been in ABA consistently for about 10 months and in complete contrast to our experience with Jack, he has had the same tech the entire time, who is amazing.

And good things are happening- he can repeat an approximation of any word you request.  He can repeat actions, he can do many things with verbal prompts.  There is so much progress that it's hard to get into- which is an amazing thing.  

His level of awareness is much higher than it was- this brings some new challenges for our family- for the first time, we are seeing sensory sensitivities in our usually "seeking" child- he covers his ears now with loud noises, he doesn't like the snow any more.  His tech and I have committed the cardinal sin of cheering too lousy when he does something well!! This is something he never used to notice- it's a positive- but I imagine it makes his life harder.  He also wants MORE input in other ways- especially visually- he will try to grab his iPad and his brothers and put on two movies simultaneously.  Or (and this one in my opinion just shows he is a genius) he will stand on a chair and watch his iPad in the mirror.  Not even a little kidding.  

His verbal communication and note I say communication and not speech, because they are very different entities, has been the slowest to develop.  And unfortunately that lag along with increased awareness is causing him more frustration than he has expressed in the past.  He is not content to accept the status quo, i.e. the same food he has always liked- he wants to keep trying until we get it right-but often loses it before we get there.  But he is trying to do it verbally, and it's just so difficult for him- he can ask for something to eat, and then when I say what do you want? He says "iPad".  And he may even be holding it.  It's just his "default" response.    It's so frustrating for both of us.  And yet it's encouraging at the same time, if that makes sense 

I am finding myself speaking to him on a different level- I often wonder if he thinks I am talking down to him.  I can tell by his actions and reactions that he has so much to say.  And yes, we have tried a device in the past, but it was clear he was not ready.  And he has always been in that gray area of having some speech and really TRYING to speak.  Of course we don't want to discourage that!  But at the same time I want him to be able to get out what he needs.  He is doing amazing with his adapted spelling in school, has mastered matching most of his letters both lower and upper case in ABA.  When I read to him I point to the words, I have the closed captioning on when he watches a show because I have the sense that letters make sense to him- I could see him learning to read just by exposure.  And I am open to a device for him- because of his continued speech efforts, I am not willing to call him nonverbal, and I will never give up on verbal communication- but I want him to be able to express himself- and if a device is the bridge that he needs, so be it.  

His building frustration reminds me that we are dealing with a very whole, very intelligent little boy who probably wants to throw his hands up and tell us all where to go many times each day.  I can't even begin to imagine how annoying we must be when we just don't get it.  

We are getting there- man is this a curvy, bumpy ride but this child teaches me something new every single day.  And my critical thinking skills and nonverbal communication?  Through the roof!

A Difficult Update

This is a very hard update to write.  And it’s written by a mama at her wits end.

I knew when Jack had to change schools that it was going to cause enormous stress for him-  that he would have difficulty coping, that he would have a burst of behavioral issues similar to what we saw at home over the summer and this fall.  I guess I didn’t realize how bad it would get.  It does not help that one of his ABA practitioners left literally 3 days before we had to tell him that he was changing schools, that the replacement person fell through and he has been without anyone 3 out of 5 days for almost a month.  That doesn’t help at all.

 

It doesn’t help that the people surrounding Jack in all areas of his day are strangers, people that don’t know his anxiety, people who don’t understand him or know his history.  People who don’t know how to work with him.  I want to scream.  I want to throw something and have a behavioral outburst.  I want a turn. 

I don’t get one.  Instead, I am expected to remain calm when I want to tell people to get their heads screwed on straight and help my son.  To smile and act normal as I explain to them that this is week TWO and by definition the period when he is going to have the hardest time, as he comes to realize that this is indeed permanent- that he will not be at school with his friends anymore, that he won’t see the aides and teacher who knew, and nurtured him for the past 4 yrs. anymore.  I am expected to deal with a bus driver who wants to sit him at the back of the bus by himself because of two verbal outbursts, when what she doesn’t realize is that this is only going to make it worse.  I am expected to be dandy with the school calling me and asking me to get him on board with doing his work this morning- to talk to him in the middle of a meltdown and “fix it”.  To deal with them telling me they are going to give him “a good month”, before we have to meet.  This in my view means, they want him out.  Already. 

 

I am expected to smile through him coming home from school crying many days, telling me that the principal told him to “cry all he wants”, and him sobbing that he never wants to go back to school again. 

And I can’t handle it.  I can’t.  Because this fall was already traumatic for all of us.  And the people surrounding him now don’t seem to be giving him a chance.  And I can’t make them do it. 

I wish I could put him in a private school.  I wish I could find people to work with him who love him.  I wish I could make his ABA be consistent, I wish that asking for someone to come 2 hrs. a day 5 days a week and do an effective job wasn’t asking for the moon.  But apparently it is. 

I am scared to keep him home, I am afraid to put him on the bus.  I am afraid to make a work call for fear the school will call.  I am afraid they won’t call when something really serious is going on. 

There are days lately that I just don’t feel like I can do this anymore.  I don’t know who in this universe thought I was strong enough to do this for two kids, but I feel like they were wrong.  I am tired and I am scared.  I don't know how to advocate for him at this point, and I don't know what to advocate for.