Our journey in the Autism Spectrum

Posts tagged ‘hope’

There is Always Recourse

Recourse:   a source of help in a difficult situation  syn. option, possibility, alternative, resort, way out, hope, remedy.

There have been so many incredible blogs posting about the horrible tragedy of Kelli and Issy that I’m not even going to pretend that I can write anything that hasn’t already been written and certainly I could never share as eloquently as those bloggers that I have read today.   But there is a lump in my throat that is just not going away tonight.

Another horrific story of an autism mom who broke.  Who was so broken she felt there was no other solution.  She had tried. She WAS TRYING to get her autistic daughter the help she needed and the education that she deserved.  This mama was trying to keep her family safe.  She was advocating for her daughter.  And what completely blew me away is that she has been WRITING about her journey!  She is a BLOGGER!  One of “us”.  A mom blogger sharing about her autistic child and their family…the good, the bad, and the ugly.

Like me.  Like so many of us out there.

And she was tired.  So very tired.  Now she and her daughter are lying in hospital beds after a failed murder/suicide attempt.  I can not comprehend this.

We read each others blogs.

We share and comment.

We, for the most part, are supportive of each other.

We reach out to each other.

We reach out to help.

We reach out to be heard.

We reach out to know we are not alone.

I cannot comprehend what Kelli was going through.  I can not begin to imagine feeling so desperate, so tired, so…broken, that she felt this was her only choice.  I cannot understand it nor can I condone it.  But I also will not judge her.  My heart is aching tonight.  Not for Kelli’s actions, but for her, for Issy , for their family, and for the path that lead Kelli to make the choice that she did.

For those of you who may be reading this, please know that  there is always recourse.  There MUST be!  We need to ensure it!  We must do everything and anything to find that source of help, whether for ourselves or for someone else.  Keep reaching out!  This is what we must do.  THIS is our recourse.

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A Glimpse at Life on the Other Side the Wall

Last night I had the opportunity to attend the Autism Awareness and Understanding presentation by Aaron Likens with TouchPoint Autism Services.   What an amazing program!  Aaron and TouchPoint have meant so much to our family. I thought I might share a bit of our story as to how they have made such a difference in our lives.

Before we had a diagnosis, I had always known there was something different about my son, Henry. Something different but perhaps something special too.  I just couldn’t quite put my finger on what it was.  He was funny and smiled a lot. He could be a loving little dude, and certainly he still is. There has always been a certain “mischievous charm” about him; a special sparkle in his eyes.   But he could be stubborn and very fussy as a toddler. He never required much sleep at all! He had very few words by 3 years old. Meltdowns became much more frequent. Daily. Well, many days it was several times a day if I’m honest about it.  He was no longer easy to engage and I felt myself really having to work at connecting with him.  A wall had been put up. We began to become isolated because of our lack of sleep and Henry’s behaviors.

At about 3 1/2 years old, despite an explosion of language skills (relatively speaking), something still wasn’t right. I was at my wit’s end. Our family could not continue to live in the chaos that our home had become. When Henry was 4 years old, our pediatrician gave us the official diagnosis of PDD-NOS and ADHD. (I now feel that the ADHD is just a symptom of the Autism Spectrum for us but at this point it really doesn’t matter). The diagnosis wasn’t a surprise by that time. Pervasive Developmental Delay (or Autism Spectrum Disorder) made sense. It was a relief to have a name for our son’s differences. That relief was promptly followed by a hard kick in the gut by reality. Now what?!?

During that first year after the diagnoses there were so many therapy appointments, doctors’ visits, more evaluations and IEP’s. I was going to just about every seminar, conference, or workshop on autism spectrum disorders and childhood behaviors that I could, trying to glean some information that might actually help us at home. Despite all of my knowledge-gathering, I still felt isolated. We knew no one else who had a child on the autism spectrum. I was exhausted and overwhelmed. I just never seemed to have the time or energy to make that one more phone call to TouchPoint. That first year, every time I would speak to our pediatrician he would ask, “Have you called TouchPoint yet?”

As we approached the one year mark, I knew I could not bear to tell our pediatrician that, “No, I still haven’t called TouchPoint.” So finally, I made the call. In that very first phone call to them I realized that TouchPoint should have been my first call. (I’ve also become a better listener to our pediatrician!) I was amazed to learn about all of the programs and supports they had in place, not only for those with autism but for the family as well!

It was about this time that I decided to start a blog. Perhaps I could work on my writing and it might give me a diversion from constantly researching articles on autism therapies and treatments.  I thought the blog would really be just for me. A place where I could process things; put my feelings “out there”, and maybe even improve my writing skills.  I still felt so alone in all of this. With this new “hobby” I found a few autism blogs that I really enjoyed reading; one of them being Aaron’s Life on the Other Side of the Wall. I was thinking, “Wow, here’s a guy with Asperger’s blogging, being a productive citizen, sharing his experience of the autism spectrum, living life! He wrote a book! And he’s here in St. Louis? With TouchPoint? Wow!” ~my first glimmer of hope for my son to have a future, real potential for him to live a fulfilling and productive a life!

In 2010 I was  excited to learn that Aaron would be speaking at the  US Autism & Asperger Association (USAAA) National Conference here in St. Louis that year! I stopped by the TouchPoint booth at the conference and I was amazed at how welcoming they were. Aaron actually spent quite a bit of time talking with me about TouchPoint, his book Finding Kansas, and a bit about what it was like for him living with Asperger’s syndrome. Later, I was further impressed as I listened to Aaron participate in a panel of autism experts. He was seated right next to Dr. Temple Grandin for crying out loud! And Dr. Stephen Shore was at the other end of the table! They were all sharing their personal experiences of what it was like living with autism. Amazing!

It was in these moments that I realized my son is actually very high functioning and since then we have always described his autism as more at the “Aspergery-end” of the spectrum. I was gaining more hope.

My husband and I decided to make a commitment to further help our son and our whole family by attending TouchPoint’s ADAPT program.  This program is an on-site, 2-week intensive parent training session that we attended with our son. A true life-changer! When we got settled in for the program, I was surprised how immediately I felt at home here. I felt as if we had a place. We belonged here!

It was the ADAPT program that truly opened my eyes that I could see and experience just how smart Henry really is! This was the first (and only) program that not only allowed us to get a look into Henry’s thought processes but it gave us the knowledge and practical skills for us to use at home! We were connecting in so many positive ways! It was a bonus that Aaron came to speak to us as part of the program. The insights that he so generously shares into what it is like for him living with Asperger’s syndrome are incredible! Aaron truly conveys hope for those living with autism and their families. His passion for spreading Autism Awareness is inspiring!

We are now currently over two full years out from our diagnosis date and a year and a half from the completion of the ADAPT program.  Our son, Henry, has come so very far! He is in mainstream Kindergarten and doing so well beyond what I could have imagined! He’s still a quirky kid and most likely always will be. But he knows of his autism and is learning about it and he is learning to advocate for himself already. I also now have the privilege and honor of coming back to talk to the new families going through the ADAPT program, giving them a parent’s perspective. I love being able to come back “home”!

I am so very proud of my son! We have a long road ahead of us but I know we are on the right path.

I also know that because of Aaron and now with his Autism Awareness and Understanding Tour, he is paving the road ahead of us, helping to make our way so much smoother, inspiring us and giving us hope! Aaron gives us many gifts through his writing and presentations to peer over that “wall of autism” to SEE and connect! From the bottom my heart, I thank you, Aaron and TouchPoint Autism Services!

A Sibling’s Need to Connect

From the moment we told Molly she was going to have a baby brother or sister she was so excited and was wanting to bond with her new sibling even before he was born, singing and reading to my belly.  She even took the news that she was, in fact, going to have a baby brother quite well.  When Henry was born she was 7 1/2 years old. She was a wonderful big sister!

She still is a wonderful big sister…but it’s gotten harder. This journey in the Autism Spectrum is not something she signed up for~none of us did! From about the time Henry was 18 months old, Molly and Henry’s bond changed…for Molly, quite often that special bond was just gone. Disappeared. She didn’t understand. As a family we seemed to be in constant crisis mode (along with having added baby sister, Lucy, to the mix right at that time). We were all beyond stressed-out and sleep deprived.  For those 2 years before the diagnoses we were five individuals desperately searching for some connection with and understanding from each other.  We were seeking calm and peace and trying to find where we all fit in to this new family of five!  All this during Molly’s tween years! Can you imagine!?!

Getting Henry’s diagnoses of PDD-NOS and ADHD I think helped Molly understand a little by giving a name and an explanation for Henry’s behaviors. But it didn’t make things easier. That didn’t make her feelings of loss of that connection with her brother go away. Now at 13 years old, she has become quite an advocate for autism awareness; a true autism warrior in her own right. But still I cannot imagine how difficult it must be for her at times.

She understands what autism is and can give a very insightful explanation about this Spectrum better than just about anyone I know. But I see the pain in her eyes when Henry “rejects” her. Screaming at her when all she does is enter the room, calling her names when she just wants to interact with him, hitting her, throwing things or spitting at her…it hurts me too. Learning that Henry does indeed LOVE her and miss her when she is not here, learning to love and connect with him on his terms…that can be extremely difficult for an adult let alone a kid!!! But still she keeps trying and I am ever so thankful for this…her determined spirit to connect with her brother says so much about her character!

This past year has been a particularly difficult time for Molly~ most I believe is just “normal” teenage stuff. But add to that a sibling that she  loves and wants to desperately feel she has a relationship with that happens to be on the autism spectrum…well, let’s just say the situation has been painful and many times, explosive. Thankfully, it seems a place she has found  some solace and MUCH understanding is with her sibling support group. It has given her a place where she has a sense of real belonging; a place that is just for her where she knows she is understood. (And I think it has also given her an appreciation for just how “high-functioning” her own brother is! It has helped put things into perspective.)

Several months back Molly made a journal for each of her siblings. They periodically work on these books together, just one-on-one, coloring pictures, writing down games and activities that they do together. From time to time through this book she again finds some connection with Henry.   A few weeks ago I posted a picture here of Henry and Molly holding marbles. It was a day that was a true oasis in a week of fighting, hurt feelings, slamming doors, and hateful words thrown about between the kids. School was out, camps were over for the summer and quarters were feeling quite close. And we were getting ready to go on a family trip in a couple of days! (Talk about forced bonding! I was dreading this trip with what had been going on between the kids all summer!)

Anyway, on this day Molly tried once more to feel a connection with Henry. He had gone into her room and found her marble collection. (He LOVES marbles, small round beads and rocks). Whether or not Molly had invited him in or he made himself at home there I do not know. (At the time, Lucy and I were having time together in our downstairs family room.)  Whatever the circumstance, Molly saw his interest as an opportunity…she pulled out Henry’s journal and they began to play and count and name all the marbles. (A very creative moment to boot!) At first I didn’t notice how quiet things were upstairs. Then occasionally I would here some quiet giggles and talking. This went on for most of the morning!!! I was afraid to go see for myself for fear of “breaking the spell”. Finally after several hours I couldn’t take it anymore and had to go see for myself. When they showed me what they were doing and Henry excitedly listed all the names of every marble and I saw such joy and happiness in BOTH their eyes…my heart swelled!

At this moment I was silently pleading with Molly to understand that this was a moment to hold on too! Grab it and hold it tight!!! Later I tried to say as much to her, but again, understanding and really remembering this is hard for most I think! But it gave me hope and I think it gave Molly hope as well!

We left a few days later on our trip and I do think Molly did take to heart this “teaching moment” about the need to connect with Henry on his terms. We had one of our best family trips ever! Again, Molly was an outstanding big sister and spent A LOT of time interacting her siblings, especially our time spent at Lake Michigan.   The dynamics of all our relationships with each other will continue to change (and hopefully grow even closer) frequently as our family continues this journey in the spectrum.  I hope Molly will always  try to maintain a closeness, a true connection, with her brother~ I know his love for her is always there, even if she doesn’t always see it. I am praying her heart will remember these times and that she knows just how special she is and how proud I am of her!

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