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!!

That New Swing Smell

You can give Jack credit for this very umm, creative title. 

John and I dug in today and worked on the OT space we have been planning for the boys.  The swing I bought on craigslist literally came over night, we already have a trampoline and a sand and water table to put beans in.  Today I found a gym mat for $25 on craigslist.  I will probably want a second one at some point, but it's a great start.

First we had to clear out the front of the garage, which was a MESS.  This took about an hour and a half.  Then I went over to the kids' private OT office and inspected their swing set-up.  Between that and some very excellent pictures of a swivel hook by Meghan Gallagher Houder, we were in business.  Brave woman that I am, I went to the hardware store and found all of the stuff- bought the 300lb load bearing variety.  I know the boys are tiny but the swing is moving and gravity is at play, so I didn't want to take any chances. 

And voila, now we are cooking with gas.

The only downside was that the boys were fighting over the swing this afternoon.  Which is a good downside I suppose.  The trampoline had been buried in the garage for awhile- Nathan went right over to it and had a blast working on his jumping.  Even though he does this every week at OT, he previously hated the trampoline at our house.  He would pretty much climb under it and lie there looking at the netting.  If I tried to put him on it he would scream.  So that's progress for sure.

As for the "new swing smell"?  Here you go.....



Where this came from we have no idea!  It's not even a quote unless someone has been showing him secret new swing smell videos?  Yeah, no.  

New Sensory Plan...

This idea has been taking shape (in my mind anyway) for quite awhile.  It started when Nate's OT began coming out of their sessions and telling me about a new word here or there that he would say after some of the sensory activities they do in their work.  Particularly swinging.  I have wanted an OT swing FOREVER for the boys- they both find it very calming, but the back and forth kind that are outside are not adequate for what I am talking about (although as we can all attest, they are pretty calming too).

Here is a good explanation:
http://www.takeaswing.com/bos.html

Great, I want one.  Here is the one I have been wanting:
https://kidsdreamgym.com/products-page/autism-swing-hammocks/joki-hanging-crows-nest

OK, close to $200 with shipping- not horrible, but let's face it, I don't have that kind of money to be spending on a swing, and with the mats that would be needed under the swing, the hanging mechanism, etc, it would be much more. 

So I was sitting in the boys' OT waiting room yesterday talking to a dad, and he told me about this:

From Ikea, for 45 bucks.  Here is the description:  Swinging develops the sense of balance and body perception. It also brings a feeling of well-being and relaxation

How awesome is this?  Oh wait, so awesome that it's been discontinued.  Crappity crap. 

So this mama did what she does whenever she has a problem of this nature- I consulted craigslist.  Well low and behold, there was one listed in Virginia!  For $25!  It was an hour and a half drive each way, but frankly I was up for it considering the circumstances.  So I emailed the seller and after telling her about the boys and where we live, she offered to ship it to us!  And since she is another autism mom, I don't doubt her at all.  This is great news for the boys.

One more thing though....where to put it.  We don't have a large area in our home that we can dedicate to something like this.  I don't trust the boys to have something like this in their room and not try to yank it from the ceiling (call me crazy, ha).  So hanging this swing will involve daddy taking one for the team.  Daddy has a "man cave" in our garage, and well, for him to have this "cave" I have already sacrificed my garage parking spot, so I guess we are both giving here.  Today I casually "suggested" setting up a sensory/OT area in the front half of "my side", while his area would still be in the back half.  And he said OK!  Now it will involve some clean out of other kiddie items, etc, but I think this will be great!  No worries about locating a beam to hang the swing from since the rafters are already exposed.  We have a trampoline, and a tunnel, so really we just need to get some mats to lay out on the floor, and then go from there.  I have lots of cheapy ideas and I think I can make this into a great, calming area for both boys.  I am totally psyched!

And just another little shout out to Ikea and their sensory friendly kids' items.  Look at this stuff:

Now I think that the rings and flat swing are also discontinued (think ebay), but the "egg chair" is not.  The thing spins, and the canopy pulls all the way down in front to make a little "cave" for the child to be in.  The dad at OT said they are probably getting rid of theirs and will give it to us.  I just can't believe that a Swedish furniture company could have such insight!  Or is it that the rest of the world is already in on the secret that there are many kids with major sensory needs?  Either way, I am excited to get started on this next little project.

Decisions, Decisions

As parents, we all want to provide for our children.  As good parents, we want to offer opportunities for growth and development outside the necessities.  But where is that line?  What is a necessity and what is an enrichment activity?  It's a tough call.  We live in a pretty upper middle class area where you feel even more pressure as a parent to have your child enrolled in multiple extracurricular activities in order to offer them a level playing field to that of their peers.

Add Autism to the mix and that line between enrichment and necessity becomes even more blurred.  There have been many different types of therapies researched for kids on the spectrum that have been found to be beneficial.  There's no way I can list them all, but here are a few:  equine therapy, aquatic therapy, vision therapy, occupational therapy, speech therapy, social skills groups, special needs sports.  The pressure on an autism parent increases because like all potential therapies for our kids, we feel a desperate drive to provide these things.  What if one of these activities really helps one of our children to make a breakthrough? 

So of course I want my kids involved in all of this.  Never gonna happen.  The boys are both in OT, which is mostly covered by insurance, but just to give you an idea, that alone (and this is just copays) comes out to $45 a week.  OK.  So swim lessons, not so bad, right?  WRONG.  For a special needs child, lessons range from $40-50 for each lesson. I have checked with all 4 local special needs options.  Equine therapy, about the same.  The boys could have speech covered by insurance, but with our insurance, they may have 60 sessions each year a piece and this encompasses speech, occupational, and physical therapy.  How on earth does that make sense?  Oh, I see your child has greater deficits than the child who only requires OT once a week.  I see your child needs both OT and speech.  OK, they can have both, but they can only go to each twice a month.  Now how is the child with greater needs going to make progress given this set of circumstances? 

Now, add to this....wait for it...two kids who could benefit from all of this.  Can someone explain to me how on earth I am to provide these opportunities for my children?  Because you see, they already require daycare, special needs daycare and guess what?  You got it- because they have special needs, it's more expensive.

When is someone going to give our families a break?  I know that our children have special needs.  I know that teaching them requires giving more of one's self.  Believe you me, I know.  Thing is, my work didn't start paying me more in order to assist me in taking care of my special needs kids, last time I checked there isn't a larger tax deduction for a child on the spectrum, and I'm pretty sure that no one has set up a trust fund for either one of my kids without telling me.  So HOW am I supposed to choose which child gets what?  Which child needs these things more?  If I won the lottery, I would be giving money to every autism family I could find.  I would be setting up a "therapy fund" for other kids with autism.  It continues to sicken me that on diagnosis, when I asked what I could do for my child, the doctor replied "how much money do you have?"

Sickens me. 

Taking Steps for Jack

I got a chance to really talk to Jack's teacher yesterday afternoon which was extremely helpful and encouraging.  I am very impressed by her take charge attitude and unwillingness to accept the party line.  Reminds me of someone else I know :).  She has been a teacher for many years, Jack's pre-K teacher from last year used to work with her at a different school.  I am starting to think that she may have facilitated his placement in her classroom.  Anyway, Jack came back in from recess and continued to cry and need the headphones.  He was convinced that the red light on the smoke detector in the classroom was really an indication that it was about to go off, no one was able to convince him otherwise.  I really hope we don't have a recurrence today, but he seems like he is in a pretty good place this morning, didn't wake up last night, etc. 

As much as I hate that Jack went through this, and frankly that his teacher went through this, it was probably a good thing for his long term services at school.  Jack is such a great kid that until you actually witness his extreme behaviors, it's difficult to believe they exist.  Well now they know (and knowing is half the battle- sorry GI Joe moment there).  I asked his teacher how the observation with the school psychologist went and she said it was useless, as Jack was fascinated by what they were doing at the time and sat still and paid attention.  Typical.  Then she said that she didn't want to get my hopes up, but she has contacted the school board resource person to come observe Jack in class.  She is apparently a person with the power to allocate more resources to Jack.  So once again, the teacher is being very proactive.  She did go on to explain to me that the issue is that Jack does not have behavioral problems. Trisha- you hit the nail on the head in your comment on facebook about my post yesterday.  He is not "dangerous", he is not disruptive to other students, other than interrupting during stories with comments, etc.  Unfortunately the resources always go to the child that could be a danger to himself or others first- and that's appropriate.  The problem is that with limited resources, where does that leave the kids that need help for developmental issues?  Screwed basically.  She suggested that if this person does not make the decision that more services are required, I need to call an "emergency" IEP meeting.  A parent has the right to do this at any time.  And I am prepared to do that at this point.  This brings me back to my second or third post ever, where I was questioning the need for an "advocate" in IEP meetings.  Eating. my. words.  I get it now.  It's not a matter of me not wanting to go to bat for Jack- I of course will be there every step of the way, but how aware am I of the resources that are even available?  How do I even know what to request?  There are some informal resources that I will probably consult first, but if it becomes necessary, I am also willing to take this step.  Sigh

The next call I made yesterday (yes it was a busy day) was to Jack's private OT.  I wanted to make her aware of the problems Jack is having, pick her brain, and see if she would be willing to work with Jack's school OT.  She was very willing to do that- I just have to sign a release at our next appointment.  She is even willing to go observe him in the classroom if it becomes necessary.  School OT's are not really in the classroom to deal with the sensory issues that Jack has.  They are there to deal with the fine motor issues that prevent him, and other children from completing their schoolwork.  So his private OT may be able to assist with some strategies to make the classroom a more suitable learning environment for Jack.  She is also putting together a list of potential interventions that we will go through at his appointment tomorrow.  On this journey, we have been blessed to connect with some really really amazing practitioners.  She, and Jack's teacher are definitely among them.

So I am feeling a little calmer, a little more "in control" than I was yesterday.  Plans are good.  Interventions are good.  Keep the positive thoughts coming- your support is invaluable to me.

You May be An #Autism Parent If....

So I have been a part of the Twitter Autism community for a short time now, but I have to say it has been one of my most positive experiences as an Autism mom.  I was telling our marriage counselor last night that not only is it a constant source of information and resources, it is also constant validation.  I am hearing so many of the same experiences that I have on a daily basis.  It is refreshing and reassuring.  I am not alone in the things I observe and live with.  For instance, there is a whole thread that is- you may be an autism parent if....

I will post some of my favorites, just so you get an idea.
You May be An Autism Parent if:

You've learned what really matters in this journey of life

Your child is turning out to be your teacher...

Your child tells you the same things/stories over and over and over again until you want to scream!!!

You're grateful for any achievement your child makes, no matter how seemingly small

 The really great days stand out because they are so rare

You feel like a chemist each night fixing meds and vitamins.  It's funny because it's true.

The walk home from school takes ages as s/he has to hug each lampost they pass.

You don't pay attention to gender specific toys or movies, as long as your child loves it, that's what matters

You cut ties with all negativity/judgement and focus on those who build you up and support- nobody else matters.

You feel like everyday is a battle with the school system.  Advocacy never takes a break. 

The morning starts with a meltdown over which light switch to turn on.

You consider adding "days without incident" sign to the wall

Almost every day you feel the highest of highs and the lowest of lows within seconds of each other. 

Your son has full conversations with himself on a regular basis.  And you find out a lot about your son this way.

You have to explain the next days plan every night before bed to make it through the next day or you could pay.

Your child has to go to the surgery center and go under gas to get their teeth cleaned.

binder has a whole other meaning- yours is full of OT, PT, IEP, GI consult, neurosych, lab tests, speech eval...

You want to smack anyone who says, don't worry, he will grow out of it.


Any single one of these could apply to our family on any given day.  And most families of a child with autism.  This sense of community is priceless to me. 

Wish I could give each person credit for the thoughts they shared, instead I will just say, if you are on twitter, type in #youmaybeanautismparentif.  It's worth the read. 

Greeno and Vino

I am starting to appreciate these Target gift cards from Hopkins more and more.  This SEED study is no joke, at least once a week I get a new packet in the mail to fill out, and every other week I have an interview of some type.  And I am not just talking a few quick questions, next week's interview is maternal history and I have been told to expect it to take approximately 2 hours.  Two weeks after that is Nate's developmental history- how long is this one?  4 hours.  And then it's in to the hospital for all of the hands on testing- that is 8 hours.  I get now why the gift cards are necessary to make this study happen in any significant capacity. This is a major commitment for any family.  I would still do it for nothing, but I can see how it would be difficult for families to complete all of this with no motivation other than helping humanity and maybe gaining some insight for their families.  That insight, in my eyes, is worth it's weight in gold, but not everyone would see it that way.  So anyhoo, it's nice to see the gift card in the mail when you realize that $20 is really not that much for 2 full hours of data collection from a parent who could be using that time to help their special needs child. I am thinking that it would be a good idea to save the gift cards to use for appropriate developmental toys for Nate, or for equipment his therapists recommend.  You can find almost anything on target.com.  

When I got this packet in the mail, I realized just how much my prenatal care is about to be scrutinized.  Not to mention my health prior to my pregnancy.  And because I breastfed  Nathan, my health status will be followed for the full amount of time I was nursing- which is an additional 15 months.  Of course I did everything I could to be healthy during my pregnancy and while nursing.  I am glad that I can honestly answer that I didn't have one drink or smoke at all during my pregnancy.  Maybe a few glasses of wine while nursing, but I was always careful to pump and dump.  I never took any medication stronger than tylenol or benadryl.  As a matter of fact, when I weaned Nathan and realized I could finally have advil, I was on cloud 9.  Talk about medication naive.  I had to keep reminding myself that if I had a headache, I didn't have to just sit with it.  That being said, when I started to think through my pregnancy, I remembered a few things. For instance, when I was about 20 weeks pregnant, I got a bad case of food poisoning and ended up in labor and delivery twice for IV fluids and IV zofran.  I also took zofran for nausea during my first trimester.  Without it, I would get sick up to 8 times a day- pretty intolerable with a 2 year old and a full-time job. This of course freaks me out- I mean, moms thought thalidomide was safe in the 70's right?  Now thalidomide is used to treat cancer....how about that?  http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001053/  But so far, no significant negative effects are known about zofran, it is supposed to be perfectly safe to use during pregnancy.  http://www.drugs.com/zofran.html  Even knowing this, if I could go back, I would take the pukey feeling. I would take that over this feeling of worry that I caused problems for my baby.  

So on the same day that I got this packet, I got the notice that it is time for Nate's next infants and toddlers meeting soon.  This is his....wait for it....one year progress report (by the way this also makes it my 6 month blogiversary- and with over 7000 views I just want to thank all of you who read- I really appreciate your support).  Can I skip it?  Honestly.  I don't want to go.  I don't want to see sympathetic faces.  I don't want to hear a bunch of half truths and empty reassurances.  I know the score.  He should be a lot further along than he is at this point.  He should be verbalizing much more than he is.  I don't need to hear it from someone else, I know.  This is with 5 days a week of ABA, 2 days a week of OT, constant work and encouragement at home, and wonderful support people within the family.  I can not think of much else we could do other than wake him up and perform drills in the middle of the night.  And I don't think that would be very effective.  Especially when mommy passes out in the middle of it all.  We also need to have the conversation about where he will go in December, when he turns three.  John and I have to attend an information session about our options soon.  Am I scared about this?  Yup.  Because I want them to tell me that there is a circus of intervention available around the corner, and at this point, no matter what is offered, it's not going to feel like enough.  I want an army of practitioners all focused on him, telling us what to do, figuring him out.  Is this unreasonable?  Of course.  Do I care?  Not one bit.  I got a call from the insurance coordinator at the boys' OT last week telling me that almost all of Nathan's covered visits for the year have been exhausted.  I find it absurd that we are allotted 60 visits for therapy- this is not just OT- this is OT, PT and speech combined.  So if he had to have all three, he could only have 20 visits of each per year?  How effective would that be?  I called the insurance company to see how we go about getting additional visits approved.  It turns out that the county (my husband works for the county) HR department has to approve it.  I have never heard of this- keep your fingers crossed that they work with us on it.  I am prepared to throw a fit if necessary, or sick our pediatrician on them.  We started our "speak smooth" supplement 2 days ago- Nate is taking it very easily.  John and I keep joking in the evenings that he is going to wake up tomorrow and tell us good morning.  Wishful thinking.  I am hearing the mom's of all of the kids that were born in the three months after Nate talk about their little ones' first days of preschool, many of them are attending the same school that their older sibling went to.  And I realize how much I have been insulating myself from people with kids Nate's age.  I almost don't even realize how far behind he is at this point because of it.  Self preservation.  I'm not ashamed of it- it's just another aspect of the "new normal".  My kid is not going to do these same things- but as I have said before, that doesn't make his accomplishments any less special.  

So I could have chosen to dwell on all of these issues all evening.  I certainly had enough to think about to pass the time- last night and many many more evenings.  But last night I had more "important" things to do.  Recently, the play group that we have been a part of since Jack was about 3 months old has for all intents and purposes, disbanded.  Most of the kids are in school, and even when they are not, we are all running around like freaks trying to get a million things done.  So we did what we should have, in my opinion, done years ago.  We changed our online schedule from playgroup Fridays to mommy's night out once a month.  On the books.  Mommy time.  Every month.  Praise God!  So instead of completing study paperwork, or worrying about our impending meetings, or insurance hurdles, I went out to a wine bar with 8 of my favorite ladies.  This was not just for fun- this was a necessity.  Mommy's medicine.  Always great to catch up with the people who have seen you in stained sweats, greasy ponytails, with bags under your eyes, and a really BAD attitude and still like you!  Oh, and to put on real clothes and makeup for a change too. 

We all look possessed in this picture....oh well

We clean up pretty well if I do say so myself.  Thanks ladies for a great night- looking forward to "mommy play group" from here on out!  Even though I have a killer headache this morning.