Some DVD's Worth Ordering

I’ve come across a few DVD’s this past year that have either shown me fun ways to teach Alex life skills or have allowed me to be a fly on the wall and observe other's challenges and victories with their children on the spectrum.

The first DVD I think is worth purchasing is a series titled Bounce!. The description reads, “Bounce is an award-winning DVD series for early learners to play, interact, have fun and practice the building blocks of life. Bounce explores the developmental steps that all children take up the ladder of life."

The DVD series includes five volumes: Emotions, Movements, Let’s Talk, Routines and Let’s Go. Each volume comes with a CD of the program songs that are pretty good! You'll be singing along to them in no time.

Alex was watching the “Emotions” DVD and witnessed an animated character named Balloo crying a shower of tears to demonstrate sadness. After a moment, Alex formed the most pained expression on his face. He was truly moved by Balloo’s emotions and he started to cry too. It took me over an hour to calm him down. It was as if this new feeling of empathy frightened him and the emotion was too hard to control. As much as I don’t like seeing Alex sad, I saw his ability to be empathetic to others as a huge victory.

You can order the DVD at www.SpectrumConnections.com.

I was in the hotel room on one of our experimental family vacations, when I saw the tail end of what seemed like a documentary about autism on HBO. I got home and googled on some names I jotted down while watching the credits.

Turns out the special was a docudrama titled Autism: The Musical. The website reads “Following five Los Angeles children over the course of six months, director Tricia Regan captures the struggles and triumphs of their family lives and observes how this musical production gives these performers a comfort zone in which they can explore their creative sides.” The DVD contains special features, video, interviews and information.

I’ve had my fair share of excitement being a part of plays and musicals when I was younger and I wondered if my son would ever be able to be a part of such a fun activity. The docudrama gave me hope that it’s possible - the challenges are there, but they can be overcome.

You can order the DVD from Docurama.

A few days ago I ordered a DVD titled Recovered: Journeys through the Autism Spectrum and Back. The website states, "The film presents documentation of therapy sessions along with interviews of the children who are now teenagers, their parents, therapists and the founder/executive director of CARD. Their combined stories illuminate both their struggles and triumphs while providing hope to families of newly diagnosed children that recovery is indeed possible. Each child received services from the Center for Autism and Related Disorders Inc.(CARD), including assessments, supervision, parent/teacher training and one-on-one behavioral therapy.

This 2 disc set includes over 60 minutes of Special Features designed to educate families who are navigating the world of autism and autism treatment."

Seemed too good to pass up. I can't wait for it to arrive in the mail!

Dr. Nancy Hoff

What pained me most about Alex’s autism was the lack of connection between us. I remember complaining to my husband when Alex was just a baby that he didn’t seem to need me the way other babies need their mothers. The eye contact, the caring to please and the enjoyment of sharing ideas and experiences together were lacking. How do you teach these innate desires - things that are naturally a part of typically developing children?

I had received a FEAT Handbook from the UC Davis M.I.N.D. Institute and searched under “Social Skills Groups/Therapy”. Dr. Nancy Hoff was listed with the description “Dr. Hoff is a board certified pediatrician who provides services for children with behavioral, developmental and learning differences.” It went on to say that she works with children ages 2 – 13 on the autistic spectrum to teach experience and emotion sharing socialization skills.

I’d heard of Dr. Hoff years earlier from some parents I met when we first moved to town. The general consensus was “She’s a great pediatrician – my child loved her!” Unfortunately, she wasn’t practicing pediatrics anymore so I couldn’t take Alex to see her. Little did I know he’d be her client a few years later.

Dr. Hoff provides play and behavior therapy based on the principles of Relationship Development Intervention (RDI). After a long phone conversation with her, I was convinced this was the program for us. My husband and I both agreed that having Alex develop the motivation and tools needed to have meaningful relationships was our number one goal.

The RDI program's core philosophy is that individuals with autism can participate in authentic emotional relationships if they are exposed to them in a gradual, systematic way. The goal of treatment is to systematically build up the motivation and tools for successfully interacting in social relationships, to correct deficits in this area that are thought to be common to all people with autism.

RDI identifies the core deficits of autism as rigid thinking, aversion to change, the inability to understand other’s perspectives, failure to empathize, and “black and white” thinking. Through therapy, parents are provided the tools to teach their child flexible thinking skills and motivation.

After a few meetings to assess Alex through parent interview as well as a few video taped sessions, we were in regular therapy with Dr. Hoff – once a week for an hour at her office in town.

I’ll never forget, after just a few sessions, Alex giving me intentional eye contact. I wasn’t seeing his usual blank gaze but a purposeful glance. He was interested in ME. I know this sounds strange, but it almost scared me. I had gotten so used to him not making eye contact with me that this spontaneous connection was a shock.

I learned so much about what motivates Alex’s behavior and how he is processing his world from Dr. Hoff. I also gained a well-experienced advocate and even mentor who has helped me navigate through the myriad of choices and issues that surround having a child on the spectrum. My learning curve was large and my confidence was low. She worked with my husband and I to obtain the skills we needed to help Alex connect.

At times I felt like we were taking two steps backward. There were some therapy sessions where he’d be so uncooperative – I mean, we’re talkin’ playing cards and plastic fruit thrown all over the place and his body plopped on a beanbag for what seemed like an eternity. Dr. Hoff would point out the positive in even these situations and would be very patient and wait for Alex to come back and reengage. I’ve had to remind myself several times that it’s a marathon more than a sprint.

Alex has been seeing her for a year and a half now and has grown in so many ways. At first he was barely making eye contact, was demanding, uncooperative, disengaged and pretty rigid - it was his way or the highway. Now, he’s wanting to play and share experiences, he takes turns, stays pretty flexible, coordinates so much better that he used to, communicates his needs, laughs and enjoys the play and he’s showing glimmers of caring about what other’s think. At home, he and his little sister are playing well together and truly enjoy each other’s company. The best part is how he wants to connect with others and, of course, that spontaneous hug.

I am awaiting the day when Alex will have such an understanding and compassion for others that he will gaze into her eyes and tell her "Thank you Ms. Nancy...for everything" with a big, genuine smile.

That First Year

About 2 ½ years ago, a well-meaning friend turned to me in the middle of a Bible study and asked if I ever thought of checking my son out for autism. Little did I know that question would send me spiraling into a whole new world.

I had never been asked about Alex in this way before and I froze up in defense. We suspected he was developing at a slower pace language wise and was a bit quirky, but hey...so was Einstein. The question stunned me. I felt as if I was caught in the act of being unaware of my son’s problems. Over the next few days I would well up with tears at the most inconvenient moments.

I searched the web, going over the autism checklists to see if Alex matched up to the criteria. Every time I wasn’t sure how to answer, I thought, “See, he doesn’t do that! Maybe he’s not.”

I spent the next few days asking people in very indirect ways if they thought he could possibly have autism. I was hoping they would say, “No, are you kidding, he’s fine.” But they didn’t. A good friend got silent, nodded her head in agreement and, with pained eyes, admitted, “I just hate to say it…I know how much you love him.”

How could it have not been clear? I wondered just how many other people thought there was something wrong with him. “Who else knows?” I thought with thick paranoia. We were so fearful of him being labeled that we thought keeping it a secret would be helpful for his future. The only problem was, it appeared everyone was in on the secret except us. It may seem absolutely insane to think not telling anyone would be helpful, but please understand, I wasn’t dealing with a full deck. A year and a half prior, both my parents died three months apart from each other and in between, my precious daughter Shannon was born.

In retrospect, being in denial and trying to cover up the obvious can be pretty embarrassing.

I remember one of the first times I saw it for myself. I had given Alex a time out and when he had finished his sentence, I asked him if he knew why he was in trouble. His big blue eyes were blank and transparent. He mumbled something that didn’t make an ounce of sense and his eyes gazed off in different directions. He knew it was his turn in the conversation, but hadn’t a clue what to say. He wasn’t present and connected – he just didn’t get it. It became obvious just how much my mind had been filling in the blanks where his communication and social abilities lacked.

Did I create a sort of imaginary relationship with my child to buffer the pain of the truth? Was the connection I thought I had not really there? Perhaps this is why people could see something was wrong with Alex before I could: they didn’t have anything to lose with the truth (except maybe a stunned friend, temporarily).

As the truth sunk in, it didn’t take long for my husband and I to see that we needed to act quickly to figure out what exactly autism was and what we needed to do about it. I felt as though I were in quick sand. My grieving process was moving at a slower pace than his need for help. It’s like I was on the wrong side of the people mover.

As I juggled through the myriad of websites and books I set out to fix him, even before I was completely convinced he had autism. There’s a tremendous amount of pressure to get your child intervention early and I felt that time was running out. I had to steel myself and get to work, viewing this whole thing as a project to get him where he needed to be.

A friend, trying to respect my secretiveness, handed me a slip of paper with the phone number of the Valley Mountain Regional Center on it. I contacted Soledad Gutierrez-Cabral, Intake Coordinator at the VMRC (209-955-3330). She answered all my tear-couched questions with kindness. We set up an intake meeting and Alex was put on a wait list to be officially diagnosed. By Soledad’s recommendation, I contacted the LUSD School Psychologist Mary Caruso (209-331-7298) to receive initial evaluations and to see what options were there for him through the school district.

Mary treaded lightly and was very sensitive to our situation. She came to our home and spent some time observing and testing Alex. I remember watching Alex sit next to her and pull out an entire mound of tissues from a Kleenex box, one by one, and throw them everywhere. We would usually allow this to keep the peace, but boy did it seem weird and inappropriate all of a sudden. I was getting increasingly frustrated with him and completely overwhelmed with what was becoming more and more clear. I remember getting choked up, wanting to break down and cry, scream and possibly throw something.

I guess, in my selfishness, I was thinking everything was a reflection on me and who I was as a mother and a person. I so needed people to show me that we are both loved, in spite of this disorder. I remember Mary letting Alex keep a cute little black and white kitty puppet she used during evaluations after seeing how much he adored it. It’s those little acts of kindness that get you through.

At the end of the home evaluation, Mary suggested we meet again. She said she wasn’t completely convinced he had autism, but after the next set of evaluations she’d be sure. I was still secretly hanging on to the hope that perhaps everyone was wrong.

After the next meeting my hope ran out and it was clear that my little boy had autism (or should I say “autistic like behaviors” because the school district can’t officially diagnose). I resigned to the fact...what else could I do?

We had an IEP meeting (which I’d never heard of before) and he was placed in a preschool class using the TEACCH program at Nichols Elementary School. He did well and was then placed in a special day class with speech and language emphasis at Lawrence Elementary School. Under the tender direction of Mrs. Diane Baker and her ever firm, ever loving cohort Cher Bear, Alex improved greatly.

I would grovel in thanks to everyone who would care and help him, being so relieved that we weren’t alone.

A breakthrough for us was when we joined a few clinical research studies at the UC Davis M.I.N.D. Institute. I filled out an online form from their website showing my interest in their CHARGE and Phenome studies. To my surprise, I was phoned the very next day. Our understanding of Alex and autism was certainly illuminated at the MIND. What a blessing to go where he was fully welcomed and wanted, where we could pick the brains of the experts and where there is solid, up to date knowledge of the disorder and hope for breakthroughs in treatment options.

He received another unofficial diagnosis from the MIND and then finally he got his official diagnosis through the VMRC’s designated psychologist.

Over time, it became obvious that he needed additional one on one behavior intervention. We were blessed with discovering Dr. Nancy Hoff who performs play therapy based on RDI principles. (I will write about what an incredible help Dr. Hoff has been to all of us in a future blog).

It took about a year to complete all the evaluations and feel like we had a solid program set up for him. If I had to answer one more multiple-choice question about his behavior I was going to implode.

We continue trying new things to increase his ability and will to connect to others. Over this past year, we’ve tried a social skills/parenting combo class at UOP, enrolled him in a play group at Speech Therapy Associates and have tried a few other activities such as swim lessons, basketball and movement class. We've had the wonderful help of Steve Taylor, our Behavior Specialist who, among other things, had Alex and his little sister potty trained in two days! We are interested in trying out a Therapeutic Riding Program and perhaps an art class in the future. Then there’s the whole biomed thing…

All along the way, we’ve been on a learning curve, trying to mimic all the various techniques of the professionals at home while continuing to learn how Alex sees the world.

There have been so many wonderful people who have and continue to come along side us and have helped Alex in so many ways. What a blessing to watch grace in action.

I did thank my friend who asked me that monumental question. Turns out, it was the nudge we needed.

The journey continues…

Back to School

Alex started first grade last Monday. His backpack looked huge – like he was going camping for a week. Why didn’t I get the smaller size?

My husband takes him to his line, says good-bye and then hides behind the dumpster, spying to see if he stays put. I’ve gotten positive daily reports.

I’m learning to relax, to “let go” (like that’s ever really possible) and to trust that God is looking after him. I try not to inquire on a daily basis about how he’s doing, but it’s hard. As his behavior specialist once told me, “Just drop him off, smile and wave bye-bye…they’ll let you know if there’s a problem”. If it were possible, I wouldn’t mind a hidden camera so I could monitor his every move.

I’ve realized my need for feedback can get me into trouble. When I receive positive feedback about his behavior, it’s as if we received a seal of approval for all the wonderful things we’ve done to help him. When I get a bad report, all my confidence circles down the potty and I wonder if I’m doing anything right.

The reality that early, intense intervention begets the best outcomes can leave one quite stressed and overwhelmed. When he’s not doing well, I fear our “early” is too late and that perhaps the program we have set up for him isn’t working. Then the panic really sets in and I want to sound the alarm, “Call out the specialists, call out the experts, call 9-1-1, get the fire hose…this is an emergency here people!”

The truth is, he has received wonderful help by many talented people over these past few years and has made great progress. He continues to have a team of caring teachers, therapists and specialists in his court who have set up a solid program for him.

This doesn’t mean that every day is going to be sunshine and lollypops or that something doesn’t need to be tweaked. At the same time, bad behavior doesn’t equate to me being a bad mother, he being a bad kid or that the plan isn’t working.

He’s going to get stressed and buck up to the demands at times, his lack of a need to please will get him into trouble with others and he may line up the balls at recess rather than play with them. He’s a work in progress just like me.