Surf’s Up

[ Ed. Note: I originally wrote and published this post for Cheairs at Redefining Typical in May of this year. With this summer’s vacation coming up, that hopefully will include a trip to the beach, it has me thinking about “the surf”. Since the original publishing I have  found a couple of pictures from last year’s trip to the beach.]

My son was diagnosed with PDD-NOS and ADHD at the age of 4. This was a year and a half ago. I had  suspected something was different about my little dude since he was about 2 years old, but that didn’t make hearing the words from a medical professional  any easier. A part of me felt a moment of relief to finally have an explanation for all of the struggles we had been going through up to that time. A “yes!” moment.

Then suddenly I felt as if I couldn’t breathe. It was as if I had been yanked down under the water. It was real for me.  Something physical. It was as if I was suspended in the water just below the surface. I could see but everything looked like I was peering through murky water. I could hear what the pediatrician was saying to me but he was muffled somehow. From that moment I associated the Autism Spectrum as fluid, always moving, always changing and all around me. A watery, living thing, this Spectrum.

I remember having to concentrate to breathe and struggling to try to grasp what the doctor was saying to me.  My husband, Grant, was off  literally chasing our son through the medical building because Henry just could not take being cooped up in the exam room any longer. So I was left there to try to take it all in and remember so I could share with Grant later. Our doctor was giving me literature on Autism and ADHD, a brochure for a local autism service, a business card for an agency for O.T., speech, and sensory integration therapy. I remember talking briefly about ADHD medications and do we medicate or not medicate? He wanted us to make an appointment in a month without Henry so we could discuss how he’s doing and to talk more in-depth about medication options or the option of no medications. He wanted to talk to us without distractions. He had experienced parents like me before. He knew I was probably barely retaining a fourth of what he was really saying. I realized even then that this was the doctor for us! We adore him!

Now a year and a half  later, occupational therapy and sensory integration therapy, speech and language therapy, listening therapy, evaluations, more doctor appointments, IEP’s and ABA training; it’s all still around me. I am just off shore~drifting, suspended just beneath the surface. Some days the waters are clear and calm. The waves move me back and forth, up and down and sometimes I even get to the surface to catch my breath. But another giant wave will come that pushes me back further down or an undertow that pulls at me~ always still all around me. (Click here to read about The Undertow). Doubt and worry cloud the waters. How can I help my son to navigate these waters of the Spectrum when there are days I don’t even understand it. The meltdowns and anxiety for no apparent reason! The echolalia, scripting, jargoning! The need to control. absolutely. everything. around him. The deficits in his social and emotional areas! I WANT to understand. I TRY to understand. What is going on in my son’s head? It is a question that is with me every minute of every day. Perhaps only Neptune knows…

My son has a diagnosis ON the Autism Spectrum. But our entire family is immersed IN that Spectrum. It is all around us. The realization that we are never getting out can be overwhelming. Heart-breaking. But I think because my heart aches continually, it is in my nature to try an embrace it~ all of it. The good. The bad. And sometimes even the terribly ugly. To own it. To make this Spectrum ours. What choice do we have? Because the waves will continue to come…

“You can’t stop the waves but you can learn to surf.” ~ Jon Kabat-Zinn

The continual crash of the waves can be too much some days. On these days I am physically tired from it all. But again, what choice do I have but to reach for my board and try to learn to surf those waves of the Spectrum?  To own them. To make them ours. Surfs up, my little dude!

Sleepless in St. Louis

Having a child that does not require much sleep and gets up frequently throughout the night can  be very tiring, literally speaking! My son is five years old and for five years we have had countless nights with little to no sleep.  We know well the path of walking through our days weary, bleary-eyed, and in a fog. We have spent many days beyond exhausted! 

We don’t usually know when it is going to be one of those sleepless nights as Henry goes to bed usually quite well now. Though getting him to bed fairly easily was a long time in coming and quite a spectacle! (And probably warrants a blog post all on its own!) No, Henry and Lucy went to bed as usual last night with what we would consider some typical 5 and 4-year-old antics  but they did settle down and seemed to fall asleep soon after we tucked them in.

When sleeplessness occurs, Grant generally gets the “first” shift  and we always hope for that being the “only” shift. Let me add in here that Grant also does not require a lot of sleep and can fall back asleep in about 2 seconds. I, on the other hand, require much more sleep and it takes me much longer, sometimes hours, to be able to get back to sleep. So over these years Grant has taken on most of the burden of the night shift.  But even he has his limits.

Here is how these sleepless nights go with last night being no exception: Henry wakes up about 3 hours after he has fallen asleep calling for Daddy. Grant will go in and check to see if Henry needs to use the bathroom, tuck him back in bed and sometimes lay down with him. Sometimes for a few minutes, sometimes for more than an hour. Did I mention that Grant can fall asleep in about 2 seconds? Grant will finally crawl back into our bed at some point. Henry will lay in his bed alone for a short bit but if he doesn’t fall asleep he will be back up calling for one of us. On occasion I do get up to take the first shift but most often Grant tries to let me sleep as much as he can until he just can’t take anymore and then I get called in.  

Now, here is the fun part,  repeat the above actions 3-4 times a night. Yes, you read correctly: three to four times a night!

Sometimes Henry will doze off in between these times, but generally it seems that he is up for the duration, eyes wide open, staring at the ceiling, fiddling with a toy or book or his bear. 

For a long time we just could not keep him in bed on these nights or a screaming meltdown would ensue. No one wants that at any time of day but I for one, REALLY do not care for this at 2AM! And 3:30AM…and so forth. Most times Henry would just want to wander/pace the house or go down to the family room to watch TV. To avoid meltdowns, one of us, usually Grant, would go with him and try to doze on the couch.

Now for added fun imagine doing this not only 3-4 times a night but SEVERAL times a week! Yep! From about the time he was a year old until almost 3 yrs, this was a regular routine most nights of the week. And as bonus when Henry was about 17 months old, we added his newborn sister to the night shift. Grant and I have lost about 3 years of our lives!

Over the last 2 years these episodes have finally decreased to one or two nights every few months or so. Usually now Henry will go back to his bed. Sometimes he is able to get up, go to the bathroom and back to bed and asleep on his own!

What is amazing about these sleepless nights is that most often the next morning Henry won’t really “sleep in”. He gets up about the same time he does usually and is good to go for the day with just maybe a few hours of sleep! I can count exactly 3 times in the last year when after pulling an all-nighter that Henry did actually fall asleep later the next day.

But not today. Have I mentioned how tired I am today?

Grant and I have tried many different things over the years to help get Henry to sleep and STAY asleep. Some helpful, some not so much. Last year I went to hear a nurse practitioner specializing in sleep disorders from a local sleep clinic give a talk about young children and sleep issues. I enjoyed her talk and felt really good that Grant and I had tried a lot of the tactics she recommended. Some worked. Some, again, not so much. At the end of her talk she opened the floor up for questions. I spoke up and asked if she had any good suggestions or books or resources for dealing with sleep issues for a child on the Autism Spectrum and with ADHD.

After a brief pause she said, “None that I like.”

Another pause and then she added, “If it is any consolation, I have found that many children on the Spectrum do seem to grow out of their sleep issues.”

I thought, “Really, Lady? That’s it? No. No, I don’t find any consolation in the hope that he hopefully will out grow this! I am TIRED! Mentally, physically, emotionally. I can barely see the nite-lite on in the kids’ room at 2AM because I am so exhausted let alone some possible light at the end of what seems an endless tunnel!”

 We have continued to stumble forward since then and Henry really does seem to be growing out of this sleeplessness. Every few months he will be up again, and again, and again….and we are tired again. Tired still.

Perhaps one day we will look back at these times, those many sleepless nights  and “lost” days and laugh. But quite frankly, I think I would rather take a nap!

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.