Struggling and Losing Hope

I really am struggling.  I feel kind of bad, because I have recently become aware that there are quite a few local “autism moms” who read my blog and find it inspirational.  I don’t feel like an inspiration right now, I feel useless.  I feel like I’m doing it all wrong.  I feel discouraged.  I feel exhausted. 

This is all about my fear for Nathan.  My limitations when it comes to helping him.  It’s about the fact that at age 3 and a half he is entering his third year of formal schooling.  It’s the memory of that first teacher telling me that I wouldn’t recognize Nathan in 6 months, that his progress would astound me.  Here I sit.  Still waiting.  I sat down and really read his IEP update from the extended school year last night.  He is meeting only one of 6 goals- receptive language, per the speech pathologist (who ironically is the daughter in law of Jack’s kindergarten teacher- the teacher emailed me to tell me how cute her DIL thought Natey was).  The biggest issue is consistency.  Even if he does something fabulous, getting him to repeat it is impossible. I know this.  There are days that the words just flow, and then nothing, sometimes for weeks.  I know what it is.  It’s the “noise” as I call it.  He can’t focus; the need for stimulation is so intense, especially tactile and visual.  He constantly wants us to squeeze him- his arms his legs- he will take your hand and place it there.  If you do it “wrong” he moves your hand back, as in, try again buster.  He waves things in front of his face at every opportunity.  He figured out that our mail is kept on a washstand by the front entrance of the house and has taken to shredding it so that he can dangle the paper in front of his face.  He has a “Woody” doll that has been getting a lot of attention- it’s because its arms and legs sway when he puts it in front of his face.  He goes after toilet paper, paper towels, napkins, leaves, grass, anything that he can dangle in front of his face.  If none of this is available (and God knows I try to keep it away from him) he now uses his fingers.  Several people have said “oh look he learned to wave”.  I want to smack them and say, “No moron, it’s stimming”.  Once again- grace.  I smile and nod.  If that’s what they need to believe then so be it- I don’t have that luxury.

If we could calm the stimming he could make progress I just know it.  That’s why I have tried the diets, the supplements.  Why I haven’t given up, why I keep adding them.  For the past two years.  To be honest, today I feel like giving up.  I gave him nothing this morning for the first time in years, and I know it won’t matter.  We STILL don’t have the mitochondrial cocktail, as Nate’s doctor needs to call it in to the new compounding pharmacy and hasn’t yet done so.  I spent 20 minutes on the phone with him again this morning- what was I doing?  Reading him what is in the cocktail he wants Nate to have.  Because he didn’t know/remember.  I’m ready to throw my hands up and say never mind; ready to give in. 

But something made me make the call to his doctor anyway.  In the midst of all of the frustration and hopelessness, I found the motivation to call him again, and give him the list yet again.  And I will give the supplements to Nate tonight; he missed one dose, big deal.  I will keep on going.  Even though I am ready to quit and spending more time watching Nate with sadness, feeling more grief, than ever before.  My actions are another reminder to me of the strength of a mother’s love for her child- all of this work is just an expression of that love- and confirmation that love is indeed a verb. 

What I Learned in Kindergarten

I haven't really written about the end of the school year for Jack, or expressed my thoughts about the over all experience this year so I thought I would take a few minutes to do that.

I sat down this evening and really went through everything the teacher sent home with Jack on his last day of school- you know everything they can find that has his name on it- locker label, book marks, pencils, all that good stuff.  Except I found what I consider to be a treasure.  The results of Jack's Assistive Technology Evaluation.

The evaluation states that Jack needs an AT device- in the form of supplementary aids, services, program modifications and supports.  He is to have daily keyboarding practice, he will be provided something call Pixwriter software which utilizes pictures to develop written work, and it will be made available for home use as well for homework as needed.  The school is to ensure that Jack has computer access in all classroom settings; he will be provided with worksheets in a digital format as needed so he can type his answers.

Well then, that's just AWESOME!!!!  Another school victory.

In my first "big kid" IEP meeting at the end of pre-K last year, I was quite overwhelmed.  Many people were talking "at" me and telling me "what my son needed".  And it wasn't much- it made me really nervous.  For his severe fine motor deficits he would have a pencil grip?  a slant board?  a lunch buddy?  That hardly seemed adequate.  The time with the special educator seemed very limited, OT assistance as well.  And no aid.  But in my eyes, at that point, these were the experts on what my child needed in school, so I accepted their "recommendations" and we moved on to kindergarten.

Man was I wrong.  Man were THEY wrong. 

It's often said that as a mom you are the expert on your child.  And of course this is true, there is no other human on earth who knows your child as well as you do.  I have fully accepted that for quite awhile now.  However, when we transitioned to the school setting, I guess I felt like the teachers would be the experts on my child in this arena, they are the ones watching him learn at school and seeing the areas in which he struggles.  I still believe this to be so to a certain extent- Jack's teacher this past year was certainly very aware and communicative regarding his struggles.   What I learned though, is that unfortunately, in the school's eyes, the only people who can really stand up and argue that "hey this isn't enough for my son" are his parents.  Jack's teacher could tell everyone and their brother that Jack needed more help, but until it came from me (and the advocate), nothing changed.  I believe this is also a legal issue, goodness knows I had to sign a consent every time they evaluated Jack for anything, but it makes me sad that the teacher who is with my son in this setting every single day is not given the power to advocate for what they believe him to need.  Or at least, they don't get results.  I hate to say it, but it's also a money issue- with limited funding for special education, the parent really has to shove their foot in the door and refuse to move it until the appropriate changes are made.  I was shocked the first time the advocate we worked with said to the administrators something like "just to be sure, you do have adequate documentation to get funding for additional support for Jack right?"  That's why I was getting letters from his OT, pediatrician and developmental pediatrician recommending interventions.  Not because the school didn't already know what he needed, but because the people who dole out the funding needed "documentation".  There is a fundamental problem here- shouldn't the educators' recommendations be trusted?  Isn't that why they are there?  Because they are able to assess these things?  Apparently not.

To many of you who have children older than mine, this is likely old hat.  However I have made several friends and have plenty of readers who have much younger children with autism.  To you I say this- learn from my mistakes and misconceptions.  In every area of life YOU are the expert on your child.  Even if you believe that your child's teacher knows what his best for him/her, YOU have to ask for it.  Demand it.  Because it is not just what your child deserves, it is their RIGHT. 

Had I let things remain at the status quo for Jack this year, he would be having an hour of special education a week, which was actually time with an aid, not the educator.   He would not be in speech.  He would not have been evaluated by the alternative technology team.  I do believe that through his updated evaluations, he would have received further aid support, reading assistance, and math accommodations.  That being said, they weren't even planning on doing either the speech or assistive technology evaluations.  But because I requested this, and made a good case for each, Jack now has speech twice a week, and is going to be provided with technology that will assist him in generating his own work instead of relying on a scribe and hoping his handwriting becomes legible, someday.  I mean, he's been in OT since he was 3- the bottom line is that he's not ready to write.  You can't force that, you just can't.

I am not trying to toot my own horn, I am by no means an IEP expert.  I do believe that I am an experienced autism mom at this point though and I want to empower other autism parents who are struggling or just starting on this journey.  Sometimes I can't believe how far we have come this year.  When Jack starts first grade, the school will be well prepared for his needs, and I will feel confident that all issues are being adequately addressed.  Not half bad for a year's work!!

Trial By Field Trip

I took the day off today (one of my FEW remaining vacation days) to go on Jack's field trip to a place called Camp Woodlands.  First of all, I should explain that for every field trip I am "cordially invited" by the staff of Jack's school.  And I get it.  It would really be a lot to ask of a parent volunteer to have a group of kids that included Jack- he needs so much supervision, and chasing, and...yeah, he needs a lot.

I won't lie and say I was looking forward to this day.  I was looking forward to time with Jack, and I was looking forward to the neat activities, but any time Jack is in a new environment, especially one with lots of environmental stimuli and structured activities, it is extremely challenging to keep him engaged, and to make him understand how to behave.  We don't have the luxury of me "giving him a look" and expecting him to understand to stop a behavior or be quiet.  He just doesn't register that type of change in facial expression. 

With all of this in mind, I will say that there were some victories in today's field trip.  Jack loved many of the activities, which ranged from catching fish in a net, to a ride in a row boat (Jack went by himself with two other students and a parent, and even led them in a rousing chorus of row, row, row your boat), to digging for bugs with Mr. Kevin, songs in front of a camp fire, and learning about trees.  He cooperated for at least the first few activities.  He was really ready to be done after lunch and had a mini meltdown at the first activity after lunch, with a burst of inappropriate behaviors, shouting and trying to run away.  I took him for a walk, even took him behind some trees and spun him around some (which is calming), picked him up and swung him.  Did not help much.  He had similar issues at the first part of the tree activity, where the kids were supposed to collect different tree "seeds"- pinecones, acorns, etc in buckets and see how many they could find.  The kids picked them up, Jack took them out of their buckets and threw them back.  There was a trailer in the area and all he wanted to do was climb on it. 

OK, so here's the thing.  Much of this is about me.  Yes, everyone and their brother noticed that Jack's behaviors are difficult, believe me, he stood out today.  What do I expect?  He is on the spectrum, he has ADHD (which is becoming a more and more clear issue each day).  He is going to have a very difficult time with things like this.  There is a reason why he has a full time aid in school, and that is a familiar environment.  I know all of this on an intellectual level.  But I am embarrassed.  Really really embarrassed.  Most of these parents don't know what is going on with Jack- I feel like they just think he is being naughty.  That his mom is right there and just can't calm him or make him behave.  You have to really watch him- he CAN'T HELP IT.  Even when he is really trying to listen, he just can't do it.  Even though I get all of this, it is frustrating, and for someone like me, who has been quite the rule follower her whole life, it is intolerable to me to see people looking at my kid in a disapproving way.  Some parents are better than others, some people are more tolerant than others.  It was a long day to endure with Jack- one that tried every ounce of patience that I have, and one that made me want to stand on a stump several times and scream "he's not naughty people, he is sensory overloaded!!!!"."  I mean, come on, he climbed on the forbidden trailer at one point and informed me that he was activating his "sensory integrator". 

This is the darned blue crab that he saw at the first activity- he could think of little else all day and tried to run away to see the crab on multiple occasions....

Digging for bugs....

Here are the positive things I take from today.  I was paired with another nurse mommy- we talked shop a bit, she was interested in my job and working from home.  She was empathetic and picked up slack with the other kids when I was chasing Jack.  Several of the parent "teachers" were just as understanding, although I could tell that wasn't the case for all of them.  And the other kids- Jack is well loved among many of his peers, and as always, especially the girls.  All of these little mothers just crack me up.  But it's not just the girls, there are some great little boys too.  That really touches me.  Kids wanted him to sit with them, on the bus, at lunch, etc. 

Jack and his buddy on the ride home....

So we both survived.  And we both learned some things.  I guess that would make the day a success.  However, now, I am ready to go sleep- for a long long time.

The Reason Everyone Loves Jack

There is just something about this boy.  Everywhere he goes, he charms everyone he meets.  Don't get me wrong, he drives many kids crazy.  I'm not talking about that, I am talking about all of the professionals that work with him.  He seems to be a favorite (in my opinion) at school, at his therapies, even at the pediatrician's office.  Meanwhile, he is often driving me nuts.  But I get it, his really cute quirky behaviors are not as cute to me because they affect every single thing I do on a daily basis.  Like the fact that I just spent 10 minutes imploring him to put his socks on because he still has trouble with it and tries everything under the sun to change the subject and avoid the task.  It's cute for a 20 or 30 minute period though, that's for sure (not the sock thing, the quirky thing).

Yesterday's assessments brought out a really funny aspect of Mr. Jack's personality.  His fixations and stubbornness are very real and apply to every area of life for him.  There is not one thing that he does not argue about, down to how I repeat things that he asks me to repeat.  Sometimes I have to try 4 or 5 times to get it "right".  Right tone of voice, right speed, right facial expression- it's a very complicated procedure.  So he had an IQ test yesterday as part of his assessment.  I didn't even realize that the doctor was doing it at first, as it is all pictoral at this age, but I knew he was having one and the only other assessment was the play one, so that's what that was.  She would show him something like a picture of a sock and he was to choose a picture out of 5 others that would "go" with the sock, like a foot.  That's the simplest example.  At one point, there was a picture of a bed, the options where something like a sandwich, a ball, a pillow, shoes, and...well, a picture of a bird.  Guess what my kid chose?  HE sleeps with several birds every night....so....yeah, he chose the bird.  Another choice on a different one was an airplane, which was completely irrelevant to the answer, but of course he chose it.  Made me think of an inkblot test and the fact that my kid would likely see a bird, horse, crab or plane every single time.  Once again- FAIL standardized test, FAIL.  You will never know how smart my kid is because you can't think like him.  I don't even care what the "result" might be, because I sat in for the test and know what he missed and why.  He has Aspergers Mr. IQ, ask him to problem solve regarding his areas of interest- he will blow you away!

Also, my son was the first kid in the history of the world to be EXCITED to have an ecg.  I convinced him that it was a robot detector.  The only issue was that the doctor kept telling him that if he didn't hold still, the machine would think he was a robot.  Ummmm, don't you get it?  He would LOVE that!  Being a real boy would be pretty disappointing to him.  Anyway he cracked the doctor and the study coordinator up many a time yesterday. 

They also got to see how difficult many daily life activities can be with Jack.  And how careful you have to be about what you say in front of him.  When we were coming back from the blood draw, the coordinator told him that the doctor was just going to look at him, like in his ears and stuff.  Yeah, he almost bolted right then and there.  Do NOT touch my sons ears!  He was like, I can tell you, they are fine, thank you.  Then he had to give a urine specimen- the doctor walked into the communal bathroom with us and someone had the hand dryer on- Jack screamed bloody murder and tried to run.  Luckily the person drying her hands was a psychiatrist so she got it and stopped right away.  The doctor had a propeller in her office- I don't even have to say a word right? 

But all of these little quirks are cute as can be on a individual basis, it's only when you deal with every single one of them every single day that you begin to pull your hair out. 

Oh, by the way, one of Jack's new things is to pause, fast forward, rewind or change the movie on the tv approximately every 30 seconds.  He stopped Curious George this morning and Nathan screamed "George!!!!" when he turned it off.  And when the bus pulled up this morning Nate said "Sam" (who is his bus aide).  So Kennedy Krieger, you can just....well, this is a family blog.  Rest assured, you got it wrong.  No regression here.

Took Longer Than I Thought

For me to burst into tears after today's assessments.  We did this study for the greater good- to benefit autism research.  There was no "personal" benefit for our family other than some financial compensation, which, while nice, was not reason enough to endure the things we have throughout the SEED study.  I have been at it for about a year now with this study.  I have done about 4 phone interviews and filled out countless surveys and sent them in.  Today was the final step- assessments for Nathan and lab work for him, me and John.  The lab work was the least painful part to be completely honest. 

There were about 2 hours of assessments for Nate and about 3 hours of "interviews" for mommy.  Daddy stayed with Nate during the assessments, so I don't know for sure how he was acting while they were trying to work with him.  It seems that he had a very stimmy day and they couldn't get much out of him.  This isn't really surprising- most kids don't perform to their potential in unfamiliar environments, and this is especially true when the child has autism.  And these people, never having met Nate, do not know his particular "catch phrases" (things that get his attention) or the best way to approach things with them.  I am beginning to realize that standardized testing in children on the spectrum is a joke.  Isn't the whole point that it's a spectrum and that these kids do not respond in typical ways?  The typical testing isn't going to show what Nate can do.  Or that's what I tell myself, and what I need to believe, especially today.

The interview was BRUTAL.  I mean, "does Nate look at you when you walk in the room?" "how about other people he knows?" "how about strangers"  "how about when he was 16 months old?".  That is just a BRIEF sampling.  For three hours.  Does he jump?  Does he hop?  How is his gait when he runs?  Does he hold a spoon "appropriately?"  Well the food almost always ends up in his mouth.  Almost every social and developmental scenario you can think of was addressed.  My brain literally hurt when it was over.  And also, I was extremely depressed.

When they reviewed the results, we got the same sympathetic look as always before the examiner started.  I even told her, "hey it's ok, we're used to this by now."  Think again.  They assessed that Nate has regressed by 4 months since his last assessment 6 months ago.  I'm sorry, but I really don't think so.  I mean, I don't THINK so.  Then I start second guessing myself.  Is he doing worse?  Because saying he regressed 4 months in the last 6 actually indicates 10 months of loss if you see where I am going with that.  Because he should have gained 6 months in 6 months right?  But if they are saying he lost 4.....

I called my mommy- what else is a girl to do? She called bull pucky.  And I think I agree.  I think that the testing environment severely affects a child with autism, as does the identity of the tester.  I think that his teachers in his school know better when to persevere and when he truly can't do something.  And I need to try and keep that in mind.  This just left a really bad taste in my mouth....

The greater good is great, but our good is important too.  I am taking a break from "extra" assessments for my kids for awhile unless there is some true benefit for them- like therapy or a medicine.  This whole, "yep, your kid still has moderate to severe autism" thing really wears on you, you know? 

The Smallest Things....

Can feel like huge victories when you are dealing with autism.  I know all my autism parents know exactly what I mean.  A hug is always awesome, but when your kid has sensory issues and hugs you, you feel like you just won the lottery.

Today's first victory occurred when I opened Jack's book bag after school and saw his hermit crab book.  This is a victory because we recently changed his behavioral incentive program at school from toys (he wasn't showing much interest) to "book privileges".  I am sending in books about his areas of interest and if he does a good job he gets 5 minutes to look at the book.  So if he brought it home, it means he earned book time, and it means that it was a good pick by mommy because he didn't want to give it back.

John and I both noticed that it was "a bit quiet" (read- dull roar) before dinner, and when I looked downstairs, Jack was playing independently.  Not only that, but every once in awhile he would holler up to us, "hey, I found my toy oriole" or "look, my hermit crab!".  He was focusing enough to look through the box for the exact toy he wanted AND not losing his temper when he couldn't find it right away. Usually he is screaming for me and yelling for me to "find it now!"  So this was really, really pleasant.  Small thing....big victory for Mr. Jack