Our journey in the Autism Spectrum

Posts tagged ‘anxiety’

Trying and Tiring Anxiety

I’m trying to be understanding.  Compassionate.  Really, I am.  But son of a bitch! Henry’s anxiety seems so irrational, ridiculous even, these past several months!  I feel horribly guilty about this.  More often than not, I am so.tired.of.it!  I lose my patience.  A lot.  I get anxiety about his anxiety.  Just STOP it already!!!

Ok, bug phobia, sure.  I get it.  We’re working on it.  Five years of working on it but still, fine.  Whatever.  Waking up at night with panic attacks is a little bit trying. Sometimes more than a little bit; Henry waking up out of a dead sleep (because we do check on him and KNOW he is, in fact, sleeping!)  saying he can’t sleep and crying and whining and screeching, unable to tell us WHY or WHAT is causing him such distress.  We try to calm him down.  He tries to calm himself down.  We remind him of relaxation exercises he can do.  He has a few YouTube videos that he can go to as well.  We’ve been to a psychologist to help us through this.  It was getting better.  Now it’s not better.  Almost-every-night not better.  He NEEDS to wear one of his dad’s hats to bed.  He MUST have one of my pillows or stuffed animals to sleep with.  (Yes, I have a stuffed rainbow chameleon. Don’t judge.)  We allow him these things, of course.  It does help.  Sometimes.  After what feels like hours of trying to talk him off a ledge.

The “newest” anxiety revolves around waiting for the bus.  For all of his school bus riding life, Henry has always had trouble dealing with the waiting for the bus, the worrying about missing the bus or the bus being late.  We’ve had complete meltdowns in our driveway over this.  Did I mention the bus stop IS our driveway? This school year he seems to be adding another layer to his worry.  This year he not only wants to go outside and wait for the bus 15-20 minutes earlier than he needs to be, but he doesn’t want to go out and wait alone.  On our porch.  With the front door open where Lucy sits on the couch and they can see each other.  He wants one of us out there with him.  Why? Because he’s afraid of flying bugs and now BIRDS.  But, you know, he can’t wait inside because he doesn’t want to miss the bus!!!!  Good gods, please give me strength!

This morning, as I finally aquiesced to sitting in the front room with the door open so we could see each other.  (Since Lucy had an early morning activity and was already at school)  I listened to him and watched him for 10 minutes, talking out loud to himself and pacing, pacing, pacing.  Repeating over and over, “I’m okay. I’m okay. I’m okay.”  All the while walking back and forth on the porch ducking from and swatting at invisible bugs and birds. Now, lest you think I’m so cruel as to sit inside and watch my son suffer through this, please know that he will STILL exhibit these behaviors whether or not Lucy or I are outside with him.  This morning I just could not bring myself to sit out there.  Sitting inside I can still watch him but look away, distract myself from his physical actions and verbalization.  Sitting outside with him, his anxiety just gets on my last nerve.  I’m not a morning person and I’ve barely had one cup of coffee before it’s time for the bus.   And his anxiety gives me anxiety.  Like there is a weight on my chest that I just can’t get rid of.

Perhaps it’s time to go back to the psychologist.  I kind of dread that.  It’s out-of-pocket until our deductible is met. That sounds terrible, doesn’t it?  I mean, I should put a price on my son’s mental health?  Still, it’s something we need to consider. More than the money, of course, I am most worried about anxiety meds being suggested.  Again.  I was really hoping we could get through this with some behavioral techniques and learned coping skills.  Meds can be such a slippery slope…though, maybe he needs that.  I don’t want him to suffer but I know sometimes adding medicines can add to problems with side effects, etc.

Ultimately we will do whatever we need to do to help Henry.  To help him be the best that he can be.  But this morning, well, this morning was downright painful and annoying and I just couldn’t deal.  I’m trying so hard.  Every day I want to help him so badly and I wish more than anything he didn’t have these anxious feelings. Some days though, I’m just tired of it.

 

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!”

Forget the Hate. Celebrate! ~ My Autism Awareness Day Post 2013

Every time I think about the subject, or see a blog post, or article, or discussion about it I immediately become EXTREMELY anxious! Like an I-can’t-breathe kind of anxious. Folks within the autism community are STILL “picking sides”. I generally make a run for the hills to avoid any possible confrontation with it.  I feel as if I could easily hyperventilate just trying to write this post.

A year ago, I wrote this.  And here we are again. It’s April. Autism Awareness Month.  Sadly, what I wrote last year still feels very true to me today.  I’m disappointed. It makes me anxious and sad and tired.

I.just.don’t.get.it.

I will support Autism Speaks, the Autism Society , Asperger Syndrome and High Functioning Autism Association (ASHA), the National Autism Association, LifeSkills/TouchPoint Autism Services, and many other autism organizations.  I want to support and promote ANY and ALL of the wide SPECTRUM of organizations and individuals that are working positively toward helping ALL others in this great big, and very diverse, spectrum of AUTISM. We need awareness at all levels of autism so we can promote compassion and understanding for ALL on the autism spectrum, no matter where on this spectrum they may be! It hurts my heart to think that some in our “community” still can’t see that.

Perhaps I should be glad that I don’t get the hate. I’ve got no room in my life or in my heart for more negativity and bitterness. April is Autism Awareness Month and I know that most of my readers are highly aware of autism every damn day, as am I. In 2012 I followed up my post linked above with this post.  And this too still rings true.  Positively so.

Because of all of this I’ve decided that I want to use this month of awareness to CELEBRATE autism. I will celebrate my son, his differences, his challenges, and the amazing progress he continues to make! I will celebrate our educators, counselors, therapists and physicians who help support and encourage us along the way! I will celebrate our whole family for rising up and overcoming the challenges that autism often brings into our lives. In doing this perhaps others, both within the autism community and those outside of it, will learn by our POSITIVE example. And really, isn’t this what we want to accomplish all year long?!?!

Welcome to April! Celebrating Autism Month!

The Holiday Letter Not Sent

I was undecided about sending out holiday cards at all this year. 2012 has been a particularly difficult year for me personally and the thought of stuffing a hundred or so envelopes with a picture of our smiling faces seemed a bit like a lie. No way was I going to be able to write a cheery holiday letter to go with it. For me, this year has been filled with bouts of depression and anxiety. I’ve been daunted and overwhelmed by the task of parenting our teenager, our son on the spectrum, and our very feisty, strong-willed Kindergartener.

The spring was filled with conflict and teenage rage from Molly. And the difficulty of raising a child on the autism spectrum is a constant source of anxiety and exhaustion. Our days are filled with reminders of how to behave appropriately without outbursts or meltdowns, social stories, and trying to get Henry to try things outside his “Kansas” (his comfort zone). Summertime found me most days in my van running kids from two different summer camps and summer school all the while trying to complete an abundance of work that was coming my way at my at-home medical transcription job. We also learned that we would be losing our beloved respite care provider, Maya, to graduate school in the fall.

My job had many ups and downs this past year as well. There was always a question as to whether I would have a job or not. Would they outsource to a larger company in preparation to transition to electronic medical records or would they decide to keep us on due to the very high volume of work they were bringing in with no plan in place for the EMR transition? This fall the questions were answered when after 6 years with them, they gave notice that my position would be eliminated. Panic about our tight financial situation getting even tighter consumes me.

And then December 14th happened. The Sandy Hook tragedy. On that day too, a dance-friend of Molly’s lost her 2-year battle with cancer. Just 4 days before that amazing, incredible young woman’s 15th birthday. I couldn’t log on to Facebook or even watch the news. It all hit way to close to my heart and I just couldn’t bear it. This past week has found me trying to cope. Trying to process these recent horrific events. And as such events usually do, to re-evaluate our own lives and relationships.

Through it all, Grant, as always, is the rock of the family. The cornerstone of our tribe. “We are OKAY. It will all work out. Look how far we’ve come!”

I want to believe that. I have to believe that. Down deep I know he is right.

This past year has brought amazing growth and maturity for Henry. Meltdowns are few and far between. Outbursts are lessening as well. We have conversations….back and forth…that HE initiates! He volunteers information about his day more often. HE chose to try Boy Scouts this fall and likes to wear his Tiger Cub uniform. He graduated from the additional literacy help he was needing in just a few months and he is up to speed with his mainstream 1st grade class. His unique personality continues to change and emerge and it is breathtaking.

Despite Lucy’s recent testing of the boundaries of Kindergarten, she too is maturing. She’s so very bright. Her exuberance and quick wit take us often by surprise. As the “baby” of our brood she lives up to that third-child stereotype of being the clown, the entertainer, the comedian. May the Higher Powers help us all!

One of the things that has really brought me much joy this year has been watching Molly transition into high school with amazing maturity and ease (relatively speaking, of course). I’ve never seen her so excited about anything as she is about marching band! It brings tears to my eyes just to see  her enthusiasm and natural talent for this! Our high school has an amazing music program and Molly is taking to all of it. It’s brought me such happiness that Molly has accepted my involvement in the parent booster group and I am thrilled that she allows me to share in this amazing experience with her! I feel a connection again to our oldest!

For me personally, I am meeting new people  and establishing new relationships with fun and interesting folks as I continue to pursue  sustainable income. I’m enjoying the holiday retail season more than I thought I would as I’ve taken a seasonal job at a local Barnes & Noble. I’m surrounded by books and people who love books and reading as much as I do!  This past year I’ve met and befriended writers/bloggers and authors that inspire me and encourage me to continue to write. I continue to speak one or two times a month at TouchPoint Autism Services to the new parents going through their ABA parent training program. Grant lends a never-ending supply of support, encouragement and love to our entire family!

Earlier this week I went ahead and stuffed those envelopes with our holiday card. On it is a picture of us taken of us this past summer at TouchPoint night at the Magic House. All five of us. Together. Smiling. The picture is not a lie. We are all healthy and  TOGETHER. And that makes us HAPPY! And THAT is all that matters!

Wishing everyone a groovy Holiday Season and Peace in 2013!

Wishing everyone a groovy Holiday Season and Peace in 2013!

It Seemed Like a Good Idea at the Time…

If you follow my Facebook page as well as this blog you know that this has been a challenging and busy summer for me. If you’re reading this blog for the first time, well…this summer has been very difficult to say the least. I wrote a little bit about it here.

My summer has been filled with running “Camp Rabinowitz” and “Rabinowitz Taxi Service”. This means that our home has been a revolving door of kids in and out and my van has rarely sat in the garage for more than an hour or so at a time. I also work part-time and I’ve been working well over the hours I had been hired for.  Interestingly, I was told that after the first of the year my hours would actually decrease and there was question as to whether I would even have a job at all. With that in mind I had been trying to work on some things that might give me options to supplement the potential for less income. It seemed like a good and prudent idea at the time. Except now I’ve been loaded down with more work that I can remember, especially during the summertime! And because both my husband’s and my incomes are so variable, my baseline stress is high to begin with.  Oh, did I mention I don’t handle stress well? (see link above).

All that being said, we do usually manage time to take a very short trip once a year to visit family in the Greater Michiana Area. The kids love spending a day or two on Lake Michigan and have been asking when we’re leaving for our annual trip all summer long. Grant and I had considered not even taking the trip due to time constraints and tight finances but we hated to disappoint the kids and it’s a nice break for all of us. We love spending time with our awesome extended family there! With some creative scheduling and financial “maneuvering”, we set the dates for our trip.

Then my husband discovered that our trip was scheduled for the same weekend that the company he works for is doing their computer conversion and those dates had been blocked out for months from anyone taking vacation time. Crap.

In a moment of insanity weakness desperation… no, we better go with insanity here, I suggested that I take the kids up north by myself. It seemed like a good idea at the time.  The kids are getting older. They truly love this trip and so as long as the DVD players are hooked up in the van, it’s a relatively easy drive. You know, as easy as a 6-7 hour drive can be with an almost-7 year-old on the Spectrum, a 5 year-old, and a 14 year-old. Then out of the blue, I had an idea that because I knew I would be relying on quite a bit of help from Molly, maybe she could bring a friend.  So, add a 13 year-old to the passenger list.

…I woke up this morning realizing that we leave THIS Thursday; the prospects of the trip are a bit overwhelming for me. As before any trip for me I stress out over making sure I’m caught up on work (that’s the hardest part!), organizing, packing, and general overall anxiety about…well, just about everything. This will be the first time I’m doing this by myself…

Well… it seemed like a good idea at the time…

Breathing Optional

I want to breathe. Really. I do. A few autism moms have banded together to  name 2012 as The Year of the Oxygen Mask. They even have a Facebook page, The Oxygen Mask Project, so you KNOW that it’s official!  It’s a year to take time and remember to BREATHE. It’s a year that Moms need to learn and remember take care of themselves. To renew. To refresh and rejuvenate. (Now if only those body wash commercials would hold true,we’d be half-way there! Easy-peezy!)

However, for me, I don’t think an oxygen mask is going to cut it. A ventilator might be more appropriate. (Please no backlash on this analogy.) But really, a lot of days it’s not that I don’t want to breathe…I am just too exhausted to want to do it myself. At this point, remembering to breathe is just ONE. MORE. THING. to add to my To-Do list that ain’t gonna get anywhere near being scratched off anyway. Know what I’m sayin’?

Now, please don’t misunderstand me. I think these “Oxygen Mask Moms” truly ROCK! I practically stalk follow their blogs and their Facebook pages. (See my list of my favorite autism blogs on the right hand side of this page).  Their stories move me and speak to my soul. They are  downright inspiring! I am in awe of their talent, their endless energy and their general “autism-mom spectacular-ness” to say the least! I believe in what they are saying and know how important it is for us moms, especially those of us with special needs kiddos, to take care of ourselves. I also know that a lot of us just don’t. Me included.

[Ed. NOTE: This is the space where I deleted FIVE  paragraphs of whining, complaining and a big dose of self-pity because really, deep down I KNOW what I should be doing and I do know and appreciate just how damn good I’ve got it! ~You’re welcome.]

My kids and my husband are my heart and soul.  My family and close friends are amazingly supportive! My husband is, well…let’s just say most days he approaches “saint” status. Srsly. I could NOT ask for more or better when it comes to support! Yet, why do I feel so suffocated and lost and floundering most days?  How do I find the strength and energy TO BREATHE so maybe I have a chance to find ME ?

I don’t know. But do I know I have to try.

This past fall, two of my friends, Donna and Kara, and I had been kicking around the idea of a “girls weekend”. To go somewhere to hang out and relax and just “be”. Despite issues with coordinating schedules, personal finances (or lack there of) and timing, we held on to the idea hoping “someday” we would work it out and it would happen.

My husband, being the man-of-action that he is (thank you ADHD), got tired of hearing me “talk the talk” and forced me to “walk”. He offered a staycation. He and the kids would go up to his parents for a weekend so I could have the house entirely to myself to do whatever I wanted. (See? “Saint” status.)

Hmmmm….would this work?  I was a bit surprised that my girlfriends were as enthusiastic as they were. I mean, my house is very small and certainly NOT fancy, or spa-like, or any place I would ever think of as a retreat. But thankfully they bought into the idea right away. During the holidays it was Kara who practically forced me to open my calendar and set a date in Sharpie. (Okay, not really but close.)

So, the date was set.  As I thought about what I really wanted to get out of the weekend, I realized that Donna and Kara are my ventilators! I don’t even notice many times that I AM breathing when I ‘m with them. They allow me to be just me. I’m comfortable. Relaxed. Inspired! All of the anxiety and aches and pains and exhaustion (see Ed. Note above) fall to the wayside with them.  So really, it doesn’t matter what we do as long as we just ARE.

I thought about a few more mom-friends that I knew could use a break and that I knew were also my oxygen masks. (Thank you Tracy, Trish, Jen, Angie and Shawn!) I sent Evites as a “key” to Rabinowitz Manor for the weekend:

*****

Message from Host

Okay, so it’s more like a “small cottage” rather than a manor but you get the idea…

It’s a MOMS-ONLY weekend! No husbands, No kids!

Come for a few hours or the whole weekend~how ever long you can manage to get away!

Meals to be determined by when we are hungry and what we want to order out. I will have some “basics” and snacks but otherwise I am keeping my cooking to a minimum. If YOU on the other hand, want to cook, then please feel free!  😉

What to bring:
*Beverage(s) of your choice. (I will have soda and some beer and wine)
*A craft, a book, and/or movie. (We have 3 DVD players and Netflix).
*If you plan to stay over night, beds and couches are first come, first served. Feel free to bring your own pillow and blanket though I do have extras. I also have plenty of towels but you may want to bring your own toiletries.  
*Whatever you want/need to have a comfortable, laze-around time!

This is an easy-breezy, über casual, free-skate weekend!

Please RSVP just so I kind of have an idea of who is coming and when. ~I promise not to hold you to it if you need to change things up!

*****

So, it is THIS coming weekend that I plan to craft and eat and drink and just BE. Breathing will be optional.

~A ginormous THANK YOU to my ventilators, Donna and Kara! I cannot express just how much you girls mean to me! And to my husband, Grant,  I love and thank you from the bottom of my soul for everything that you do, ALWAYS! ❤ ❤ ❤ ~

The Longest Season

It’s been a long, difficult soccer season from the very beginning. You can read about our rough start here. This year our two littlest chameleons, Henry and Lucy, wanted to follow in our oldest chameleon, Molly’s, footsteps by playing soccer. They did a small instructional mini-camp in August which didn’t go so well either but with Henry seemingly doing well in mainstream Kindergarten, we figured now was as good as any to give it another try. In other words, Grant and I were ready to “rip it off like a band-aid” and get this first experience with a team sport over with. We are lucky to have an instructional league in our community just for their age group and they were able to play on the same team.

If you still haven’t read about that first practice yet, go ahead now. I’ll wait…

Okay, thanks….So from that first practice, things slowly did begin to improve, relatively speaking, of course. As Henry got more comfortable with how practices were run and what was expected of him, he was able to spend more time on the field with few and shorter breaks and hardly any more meltdowns. The weekly games, however, were another story. After working so hard at practice on sharing, turn-taking, following instructions and practicing the same drills and exercises over and over…well the actual games must have felt like complete and utter chaos with very different rules!  Certainly there is very little turn-taking at this age and NO personal space! At this pre-school/Kindergarten level soccer is affectionately known as “herd ball”.

 Twice a week was not only full of anxiety and dread on Henry’s part but for Grant and me as well. Would this week be any better? How long would he practice before he would need a break? Would Henry be able to participate in the weekly game at all?  How many times would we have to redirect or intervene and remove him from the field? Would Henry’s challenges detract from the other kids’ experience and enjoyment of the game? We wanted to be fair to the other kids and parents too!

 Because we could see he was improving, we continued to make him go to each practice and game. It may sound cruel to “force” him to participate in something he clearly did not like. But we felt that since Henry was the one to say he wanted to play soccer in the first place, we wanted him to learn that even though he might not like something, once you started it, you need to finish out that commitment. Now, of course had thing continued as horribly as the first one, we certainly would not have put him through that but thankfully they didn’t. Henry didn’t want to go to soccer after the first week or so but there were no more major meltdowns and he would always end up getting dressed and ready without too much of a big fight. He was learning about commitment and responsibility. (I hope!) You know, as much my 6 yr. old boy on the Spectrum can.

 I think once he started getting the concept of the game in general, his biggest frustration was not being able to score a goal. He couldn’t take the stress and anxiety of missing the goal or not even getting a chance to get his foot on the ball let alone try to score! It also didn’t help when he would only be on the field for a minute or so before he would run or stomp off crying or mad that he didn’t get the ball. Crowds and other people touching him is a BIG stressor. Now throw him onto a field with 15 other kids all chasing one ball….yikes!

Our coach was amazing! He was always so positive and encouraging with all of the kids! He was always fair and treated each kid with kindness and understanding and respect. The parents seemed not to notice or be upset with Henry’s sometimes explosive playing-style and no one ever complained or was negative about Henry’s constant trips on-and-off the field   several times, randomly throughout the game. (At least no one was outwardly negative toward us and I’ll certainly take that!) I was so glad this was an instructional league, with the emphasis on having fun and really just getting that first experience into the game of soccer! Lucy as always, just went with the flow and would continue on playing no matter what her brother was doing. As long as she got a turn as goalie, like her big sister, she was happy!

About mid-season, Henry began wanting to count down how many more practices and games until the end of the season. At this point, Grant and I were counting too! Somehow we all managed to make it through and our last game was this past Saturday. It was cold and windy and we were missing a few players. The games were running behind so we had to wait for our turn on the field. Henry was agitated and whining and complaining before the game even started. Oh, we so wanted to just get through this last game!

Finally the game began as usual, Henry still agitated but at least on the field and playing. Then, it happened. Henry somehow managed to get the ball somewhere around mid-field and took it all the way down to the goal. He kicked it right at their goalie (because that’s what they do) and it slipped past the kid and rolled into the net. I’ll be damned! My son scored a goal!!! Everyone was cheering and our coach gave me a thumbs-up as he was running down to that end of the field! (At this age, coaches are out there with the kids~thank goodness.)

The game went on and soon Henry had enough despite the excitement of his goal. It was always just too much. After that game, the kids each got a medal, a hotdog, and lemonade! Oh they were all so proud of their medals! We were glad it was over as was Henry. We made it through the season. The longest soccer season ever! But Henry did it and improved! Bonus! He is learning about knowing when he needs to take a break and how to do that appropriately. He is learning that it is okay to try new things and it is okay not too always like those new things, but sometimes we still have to do them.

The following day, there was an e-mail from the coach to all of the parents. When I read it, I got such a lump in my throat. I knew then that we did the right thing by keeping Henry on the team. We had the perfect coach for it too! Here is what he wrote:

“Dear All, What a great season we just finished!  I hope all the kids had as much fun as I did.  Everyone really progressed and had a good time.  All the players contributed to our team and I appreciate all the hard work they displayed at practice and during the games.  I do not mean to single out any players as every player helped out a lot during the games, but it sure was special to see Henry score a goal yesterday. I have the medals for the players that were not able to attend the last game and I will get them to you somehow.  We hope you have a safe and enjoyable Christmas season and happy New Year.  Take care and thanks for allowing me to coach your kids, Steve”

Um yeah, it WAS special! More than I can say! I was so touched that the coach saw that too!

For the rest of the weekend, Henry talked about scoring that goal.

“Did you see that?!?! Did you see?!?! No one stopped me and I kicked the ball and the goalie didn’t stop it!!! No one could stop me and I scored a goal! Molly is going to be so special proud of me!!!!”

Oh yeah, my dude, we are ALL special proud of you!

Soccer Practice Fail

Almost immediately I can see my little dude becoming overwhelmed. He paces in wide patterns and circles. He stands on the outermost edge of the group as he possibly can. He’s not looking at any one thing or person, almost manic, his eyes dart all around as his body keeps moving about. When encouraged to come closer to the group, to participate, his protests come in short, loud, outbursts and he moves even farther away. Yet, he won’t step back and take a few moments to calmly watch the group either. This suggestion also brings loud protests. As time goes on his distress worsens. Louder, longer outbursts and lashing out, kicking, spitting, flailing arms. Maya works to bring his focus in by giving him simple direction to follow. We continue to encourage, demonstrate, and coax him. Finally he actually participates for a few minutes. But so soon he is back to the previous behaviors. Every positive reinforcement we give only seems to agitate him more. What little ABA game I brought with me has disappeared. I am struggling to try to help my son. The behaviors escalate. My focus, my tunnel vision, narrows. I see only my little dude. I hear Maya talking and we all work together to bring him out of this meltdown. It takes 3 of us, Grant, Maya, and me, to coral him. I catch him by the arm when instinct and past training lock in and I wrap his arms up in a safety restraining hold that I learned back in college when I worked for the State Department of Mental Health. (At this point I cannot even think about how horrified I should be that I have to again resort to this hold on my own son.) He continues to kick and yell and try to wrench free. We move to the side of the field. I sit down with him, arms still wrapped up and Maya tries to still his jerking, kicking legs. He knows once I sit down with him in this hold things have gotten out of control and we are done.  I will absolutely not let go until he comes back completely from the depths of the meltdown.  We sit. And we wait.

In his protests he is able to verbalize that it’s too much. That it’s hard for him.  Yet, it is hard for him to remove himself from the situation, to sit back and watch. That is painful as well. I am helpless. Nothing seems to take away his panic, his hurt. We continue to sit. As he finally quiets and I calm as well, my heart aches and I cry silently inside, keeping my tears locked up. I have failed my son on this evening.  He continues to remain still and I feel his body start to relax. I ease my grip but keep my arms around him. He watches his team continue practice. He says he misses his dad who is down on the field, continuing to work with Lucy who is also on the team. Henry starts to talk, plainly and calmly. He is simply matter-of-fact. As if nothing distressful happened. He begins to smile and joke and tell funny stories. My heart fills with  joy and love that I have for my son. But the ache, it too has stayed with me for a week now…and  I wonder if  I will be able to handle things at another practice tonight. I am anxious and worried and sad. This failing is not of my son’s but of my own.

Good Morning Peep, Chirp & Quack

This morning at 6:30pm I was awakened by my little dude. He crawled into bed and snuggled up, sleepily asking, “Watch a show?”

I rolled over just enough to reach for the TV remote from the dressing table but not enough to disturb his closeness. I immediately relinquished the remote and his fingers deftly worked the buttons to search for the subject of his latest intense interest.  PEEP and the Big Wide World. Morning, noon, night and various times in between. As I lay there, eyes closed, listening to Joan Cusack and envisioning her trying desperately to drink  soda from a can (name that movie!),  I pondered why PEEP, of all the shows we watch (we’re a TV/video family, I will admit. Temple Grandin would be appalled!) why would this one hold his interest for so long over these many past months?

The more I thought about it I began to see. Three friends, Peep, Chirp and Quack, all sort of odd in their own ways, go out and explore their “world”. They have adventures in science as they learn about their environment and each other; their differences and their sameness in their surroundings. Processing, logic, trial and error, science. Yep, right in my dude’s wheelhouse.  As Joan  continued to narrate this morning, I began to think about Henry’s world over this last week. SO MANY NEW THINGS all in one week. LOTS of new experiences and data to PROCESS. Even more when you take in to account our entire summer!

In this past week alone, Henry experienced soccer outside of our backyard for the first time, surrounded by strangers, thrown into the mix right away. At his Kindergarten orientation he went into his new classroom (eventually) at a new school for the very first time. Every single person and thing in that room was new and unknown. He had a practice bus ride. Our schedule was thrown off on top of it all this week due to that limbo time of summer when the routine of camps and activities are over but the school routine hasn’t started yet. The weeks where we try to cram in all the last minute running, preparations and appointments before the school year begins. And most of this week Grant has been out of town; something that is a very rare occurrence. None of us are used to him being gone for much more than a work day, let alone almost 5 days!

So much anxiety. Through the roof anxiety!  But he’s mostly been able to hold it all together at least until we got home. That’s big! That’s a major step in his learning to cope. Some things I was hoping would have gone better for him, like his soccer experience. Not quite a disaster but I wouldn’t call it a success either. But we will keep trying.  Or at least we will keep trying to keep trying other things anyway.

We’ve had a summer of success really! New things, new people in particular, he has processed and figured out and got through them, if not always with flying colors, but he did it! This spring, Maya, our RCP, came into our lives and she has made such a difference ! Henry has accepted her as someone who belongs here. That in and of itself is BIG! (I really do need to share more about our Maya! She certainly deserves more that just a mention in a blog post!) Henry participated in a mainstream part-day summer camp and actually did quite well! We have spent more time at the pool and in water this summer than ever before (with much of that opportunity because of Maya!) and that was a great success!

On Tuesday my little dude will get on a school bus and head to his first day of Kindergarten. There will so so much to take in, to explore, to process, to learn. It’s a big, wide world and it’s waiting…just for him.

PEEP’s Theme Song: 

Well, it’s a sunny day
I feel brand new
There’s about a million things
That I could do!
Whoa-oh-oh
Would you like to
Do them, too?
Yeah
Well, it’s a big wide world
And it’s waiting for me and you!

Let’s look around
What will we see?
Round every corner, a discovery!
Whoa-oh-oh
There’s no place I’d rather be!
Oh, yeah
Well, it’s a big wide world
And it’s waiting for me and you!

Written by: Eggplant Music and Sound Design

Performed by: Taj Mahal

 

[P.S. from the Editor~ Oh, yeah, and for any of you that may also be a product of the 80’s and/or “classic” movie buffs:

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!

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