It’s That Time of Year…

It’s that time of year. And no, I’m not talking about Autism Awareness Month. For us, it’s time for the annual IEP. Time to schlep out “the binder” and review last year’s goals. Time for that painful rock of anxiety, that I try to keep pushed WAAAAAY down, to slowly rise from my stomach and stick in my chest and throat. Time for me to agonize over what goals  for next year in 2nd grade will be in the BEST interest of my son.

I vowed to stay positive this month of April for my son and for autism awareness. But as I reviewed Henry’s most recent progress reports my positivity faulters. Yes, he has progressed in every single one of his goals.  In fact, he even met his language therapy goal! We adore our SSD teachers, Mrs. T and Mrs. Q!  So does Henry! Lots of wonderful comments on his progress report…his IEP progress report.

His gen. ed. progress report is a whole ‘nother ballgame.  He still continues to have many “Needs Improvement” marks in every area and “Still Developing” in Written/Oral Language. (ummmm…so how did he meet his IEP language goal?)  His gen. ed. teacher is amazing!  I don’t think we could have gotten a better match!  Miss SB always has positive things to say about Henry and she always remarks on the improvements he is making every day.

And still…the anxiety is there.  The worry is there.  If another parent came to me and shared these kinds of thoughts about their child, I know I would tell them to keep moving forward, focus on the positive, work together with your team, communicate with your team.  Because as a parent, we know our kids and can advocate for them better than anyone else.  It’s all going to be OKAY!

Do as I say, not as I do.

This year I go into Henry’s IEP more experienced in the process.  Last year it took less than an hour and I came way very satisfied and as happy and hopeful as I could.  This year will probably go the same way.  I don’t know why I get so anxious.  Quite frankly, it’s exhausting.  Nonetheless, I will get through it.  Somehow.  As I do every year during this time.  I just have to pretend to be that “other parent”.  That parent that I would encourage, “It will be OKAY!”

First Grade IEP-Oh How Far I’ve Come!

Today is Henry’s IEP. We will be discussing where he is now in regards to his development, what he will need for first grade in the fall, etc. I know many of you know (and live) this scenario.

I’ve only really been stressing obsessing thinking about this meeting for a few days now. Which in itself kind of freaks me out. Yes. Basically I’m freaking out about not freaking out.

A year ago I wrote about getting ready for Henry’s Kindergarten Transition IEP and then when it was all said and done I did a follow-up piece. As I re-read these posts I could feel my anxiety and emotion about it all over again.

But this year is different. I only just pulled my son’s binder off the shelf and gave it a quick flip through to make sure I have current information, progress reports included and well…that’s about it.

Henry has come so very far in the last year! (As he had the year before that!) And I’ve come to realize that I too have made progress! I’ve gained confidence in our new elementary school and our team we have in place there. I have a new confidence in myself that I CAN and WILL advocate effectively for my son and we are teaching him and enabling him to advocate for himself!

I give MUCH credit to our school and teachers that have allowed us to take such an active role in our son’s time at school. We have been so very fortunate to have had AMAZING teachers in our son’s life beginning with his SSD preschool teachers (whom I still keep in contact with!) and then Henry’s Kindergarten team  this year…they have helped and taught Henry so well. But above and beyond that, they have truly SUPPORTED our family, given me confidence in myself and my son.  His general education Kindergarten teacher this year…well, wow!  I’m at a loss for words regarding her…spectacular-ness!

My son is moving on to first grade in the fall. We’ll be discussing that and making plans for the next school year soon.  In less than an hour and a half, to be exact. Sure, I’m a bit anxious. But not “freaking out” anxious. Compared to a year ago? I’ve come so very far!

Processing the Twilight Zone (or Kindergarten IEP- Part II)

[Editor’s Note: An alternative, more appropriate title for this post really should be: An Annoying Mother Who Worries Too Much! ~Trust me, I know. I annoy myself!]

School is now officially out for the summer. It’s probably time I just push through this post and get it out there…before summer is over and we enter into a whole other mess of worries and anxieties and issues! This particular blog post has been sitting in my drafts for days and days now. I just haven’t been able to bring myself to fully think through and process the whole thing. I can’t seem to grasp (or don’t want to grasp) the thoughts swirling and spiraling in my head. I am not completely sure why but  my guess is because just thinking about it raises my anxiety. If I think about it too much doubt, worries, fears about whether or not we made the right decisions creep in.  Worrying and second-guessing come naturally to me so I like to avoid and “stuff” all things which I don’t want to deal with…like then maybe it won’t happen. Denial…I could not possibly be sending my son to all-day, mainstream Kindergarten in August where he will ride the bus, eat lunch and be in a class of TWENTY other children with ONE teacher! All. by. himself!

So if you remember, a few weeks back we had Henry’s big Kindergarten Transition IEP. In case you missed it you can read the prequel here. Since that time I have been slowly trying process what transpired. 14 or so individuals (not counting Grant and myself) sitting around two big library tables pulled together was a little intimidating. And when it came to discussions about data and percentages of pull-out versus push-in and weekly minutes in the triple digits….well, my brain shut that part out for fear of vertigo and vomiting. (Some day I hope to write more about my newly self-diagnosed dyscalculia~it has a name!) Anyway, if you asked me now, I would not be able to tell you exactly what even came out of that IEP…that’s how badly I block data and numbers. (Scarier still is that I do the banking and bill paying for our family!)

Anyway, what I do know is that he is roughly getting only about 20% special education help; mostly in language and social/emotional areas. This is good. Right? I think?  Occupational therapy is basically being reduced to only a consultative basis, which is reasonable at this point.

Overall I came away from that (2-hour!) meeting feeling pretty good. Still nervous and anxious about Henry starting mainstream Kindergarten but it wasn’t so horrible. I still  had an appetite afterwards. Not feeling nauseous after an IEP is a good sign for me so the fact that my husband and I enjoyed a very nice lunch afterward was a positive.

What my brain keeps circling back too, and I have said as much to his beloved SSD teacher, is that my little dude looks pretty darn good on paper. Everything we talked about and decided on in the IEP makes sense and seemed reasonable at the time.

But now…the more think about it, what my son is on paper is not what he always is in the classroom and out in real life. And what triggers his autistic traits to come out are generally what are found in the mainstream school setting; the hum of voices in a confined area, many things going on at one time in this setting, many people/classmates moving around him…that buzz or hum causes him to shut down, act out, become noncompliant, meltdown. We have yet to see any real success in this area without one-on-one help. Now I am wondering if I stressed this very real trigger enough to our new team. There was no talk of a para for him. I do remember questioning this at one point where I was “assured” that they would have resources to pull in someone for him if needed.

I have enrolled Henry in a mainstream summer camp starting next week where he will go two half-days a week with his younger sister, in hopes of introducing him to a more mainstream setting. He will also still get two half-days of SSD summer school.

I know I have to let go. I have to raise the bar for my little dude, nudge him. But his anxieties and meltdowns are so painful to watch. I feel them along with him. He generally doesn’t even want to talk about Kindergarten! I anticipate a shaky start, some bumps in the road but I have to believe we will get through it and he will succeed; surpassing my expectations as he is known to do.

For now, I am going to try to take one small step at a time. Henry and I will take these steps together…anxiety and all! We will see how the mainstream camp goes. We will talk about Kindergarten; like it or not. I don’t let him see my anxiety. I don’t let most people see it. Ever. But it is there still just the same as it is in my little dude.

Now I await the letter that will come in the next few weeks telling us who his new Kindergarten teacher will be. And then I will probably worry some more! I haven’t even begun to address my little dude’s social/emotional issues! In between all this worrying I hope to actually enjoy some of this summer…Get ready for us Mrs. Kindergarten Teacher!

IEP’s and Rod Serling

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Kindergarten Transition IEP. These three words  have been ominously rattling, clanking, whispering and shouting in my brain for weeks like some surreal dream sequence from an old Twilight Zone episode. Curse you Rod Serling!

So much information, data and lingo is tossed around. So many people at this one….the outgoing team who we LOVE and our soon-to-be new team who we have never met! Teachers, coordinators, therapists, administrators! That in itself is enough to stir up nightmares!  An IEP meeting is truly a strange world in a Twilight Zone of its own.

The date has been looming and the waiting has been full of anxiety! I like a plan. I am not crazy about change and I don’t like surprises. (unless it’s a box with something expensive and sparkly inside or a winning lottery ticket!)  I just want this to be done and over. Yet…

Now that finally the day is almost here, 44 hours and 30 minutes to be exact as I type this line. I’m getting even more panicky. I am anxious about things going smoothly, of getting the services and support my son needs for the big jump into mainstream kindergarten. I want to start off at this new school with this new team on the right foot. That can make all of the difference!

Am I prepared? I should be but I certainly don’t feel like it. I am finding it so hard to prepare for the unknown! Thoughts and worries are swirling vortexes in my head. I have no idea how this new team executes an IEP meeting. I really don’t have any idea what to expect! What am I forgetting? Have I left something important out of my notes? Am I missing key issues that need to be addressed? Where are my notes? I still have to finish the collage of my son I am putting together for the new team. I feel such pressure to find just the right photos so they can really SEE my little dude. So they can see how smart and funny and GOOD he is. It is so important that they can see his potential so as to help him to realize it.

I have less than 2 days to get focused, get over my anxiety and get on with it. It will be what it will be. For now, my eye is on the short-term prize of just making it through the meeting and then off lunch at a nice restaurant for my favorite lobster ravioli and a glass of wine (or two!) with my husband! By this point I have to think that all will have gone well and we will have navigated through the Twilight Zone. And we are not inviting Mr. Serling to lunch with us!

For the (Permanent) Record

When you have a child with special needs and/or an IEP (Individual Education Plan) life is full of what seems like endless appointments, therapy sessions,  forms and paperwork, observations, assessments, tests and meetings. And new  lingo!  (This I have not mastered yet but I am sure in time I will become quite fluent!) Once the “IEP/assessment ball is rolling” so to speak, the dominos fall and this is where the  cascade of  the above mentioned forms, testing, and the like, begins. It is at this point I feel I do need to insert here that the forms and evaluations and questionnaires that are sent home can be quite daunting and sometimes just plain ridiculous! Of course, being the type of personality I am, these prove to be a particular challenge to me as I want to always give the very best, most accurate answer I can on every. single. question. I  agonize over each word, each qualifying answer. This is for my son. What if I don’t answer something as accurately as I should and it puts him in the wrong category? What if my answers give the wrong impression that he is higher functioning than he really is and therefore, will not qualify for the help he truly needs? Or what if I answer too severely putting him in a slower category and then he will not be challenged to live up to his full potential? You see where I am going with this?!? It is a nerve-wracking process for me! (And in turn, for my husband as we try to fill these out together, each of us with our own opinions and experiences with our son~it can be frustrating to say the least!)

Because Henry had made so much progress last spring and over the summer, when school started again in August I asked his teacher if we could reassess his IEP. I also asked that his speech/language be re-evaluated because he had not qualified for help in this area previously but with age and time he still has not improved much in his communications skills.  So, back in October we had a meeting to review and discuss Henry’s current IEP and possible evaluation and reassessment to see if he would now qualify for  speech/language therapy and assessment of his relative intelligence (yep, that would be an IQ test).  I do not put too much stock in IQ tests but in trying to get Henry ready for mainstream kindergarten in the fall of this year, I felt this was a good time to have him tested.  I feel it is important for us to have an idea of where his cognitive abilities might lie. Next came the home/parent evaluation forms, more paperwork for us to document Henry’s history and more paperwork and forms for his angel-of-a-special ed. teacher. For Henry, more testing. A few portions of these tests are fun and like games to him. Others are just plain work. I do believe he is catching on and I am wondering what suspicions may go through that mind of his every time he gets pulled out of class.

So, that brings us to last week. (The intended crux of this post.)  We had a meeting to discuss the results from all of the above! Lots of stats thrown on the table, graphs, a  bell curve, discussions of behaviors seen and not seen, more lingo. No surprises. It seems we are all on the same page. What we are seeing at home, they are seeing similar at school. Similar enough anyway. To quote Temple Grandin, “Generally people on the autism spectrum tend be really, really good in one area and really bad in others”. Yep! That’s my little dude!  He is a visual thinker. He does see in pictures. Great builder! A hands-on kid. Not so great in the communication/language or social/emotional areas. Overall, we got some really great news regarding Henry’s potential and what we thought we knew about our son was validated.

So what the heck does all this mean?!? This is what I was thinking after the dizzying array of information that was put before us. Ultimately, Henry qualifies for more help in the area of language and pragmatics! Wonderful! Also, now that he is 5 years of age and heading to kindergarten in the fall, he is ready for his “school age” diagnosis. He does in fact, have Autism. Yes, we know this. We have had the medical diagnosis of PPD-NOS for over a year, along with ADHD.  It is because of those diagnoses we have been able to access special services for our son to help him grow and learn. But now, with this official school age diagnosis he will certainly have the continued support through his IEP’s for whatever help he may need throughout his school years! YES! Great news! I am smiling! I am relieved and happy!

And then I hear the Violent Femme’s Gordon Gano. His voice is saying in my head, “I hope you know this will go down on your permanent record.” Time stops. I am frozen with fear. Good God what have I done?!? Autism. My son has autism. By trying to make sure he gets all of the help and support he needs to succeed, I have succeeded in labeling him. I feel bile rising in my throat. I try to maintain my composure and I keep smiling. Somehow we finish up the meeting. There is chatter about what a good thing this is and how next we will set up an IEP date to include the speech/language pathology and revise Henry’s IEP for the rest of the school year and how we will have to have another IEP meeting just before summertime to discuss and make plans for transition to kindergarten. Great. No worries, I say. Sounds like a good plan. The pleasantries continue until we all go our separate ways.

For the rest of that day and well into this week I have felt as if I am moving in a haze. I can’ t seem to concentrate on anything. Thoughts and emotions tumble around in my head and in my heart. I know in my head that this school-aged diagnosis good thing to get him the support we know he will need and there certainly is no mistaking Henry’s challenges and differences in particular areas. As a family we have not been ones to shy away from talking about Henry’s diagnoses. We are not embarrassed or have any shame whatsoever. We embrace Henry for who he is, differences and challenges and all! But for a few seconds, my heart broke and I panicked. My son has autism. In those few seconds I wished it wasn’t true and I felt guilty about that! I realized in that moment that deep down in an almost buried corner of my heart, there was denial hiding there. Perhaps because Henry’s challenges and differences, though noticeable after spending some time with him, aren’t really all that prominent overall. We can “forget” the autism aspects of Henry. How could I wish my son to be anything other that what he IS? Henry is so very bright and funny and loving. He’s got a dimpled grin  and a twinkle in his eyes that will capture your heart! The kid is SMART! He is his own little dude and he has the potential to take the world by storm, doing whatever it may be that he wants to do! I have no doubts about this. Although there are certain aspects of the autism spectrum that make him the kind of person he is, it by no means defines him! But now it is on his permanent school record. Autism. Will future teachers see beyond that? Or will they just see Henry, the autistic kid? Will they take the time to get to know that Henry is so much more than that? Fear and panic overwhelm me. A long road lay ahead of us. How will we ever be able to make it through?

Then, through my tears, I envision my little dude for all that he is; his quirkiness and intelligence, his quick wit and amazing sense of humor, his vision and skill for building and “inventing” things.  He has an imagination like no other! He will use these strengths. He will be leading the way.  Love and pride and hope chase my anxiety away. Henry may have autism but autism does not have Henry. We will accept this label if it means helping Henry to be the best Henry he can possibly be.

I realize we are starting a new leg of our journey in the autism spectrum. True advocating for Henry must really begin. It is time we start to teach Henry to advocate for himself. He  has a long way to go and a lot to learn. We have a lot of work to do together, Henry and our family. Grant and I need to learn to also be educators for others, the teachers, administrators and even Henry’s peers and their parents. But the best teacher of all will be Henry, himself. He will teach the world that he is so much more than autism, no matter what might be written down on his permanent record.