Sunday, December 20, 2009


So, I have to ask: has anyone out there experienced a child with autism have a lot of OCD? My little guy just turned 12-years-old, and it seems like his obsessions just continue to increase.

I don't care that he washes his hands obsessively, dries them off in a ritualistic fashion, brushes pencil eraser shavings off in a pattern of three strokes, constantly rubs his hair and then fears baldness as a result, says the word "excuse me" until it sounds just right, BUT..........

IT'S THE FRIENDSHIP OBSESSIONS that get me crazy!!! In his world, friendships are EVERYTHING! He will do whatever it takes to keep his friends. He has no self-worth. It's all tied up in having a friend. He is constantly checking in with people: "we're still friends right?" He's afraid to tell any of them "no", or they won't want to be friends with him anymore, and for Anthony, that would be the equivalent of death.

My biggest fear with this is that he will especially obsess over a child who clearly and verbally has told Anthony that they don't want to be his friend. He has a new child in his class right now who is very aggressively against Anthony, and has even stated "I like everyone. It's you I hate". This makes Anthony want to come back even harder, and work more tirelessly to get this kid's favor. Why won't Anthony just say "forget you! who needs you!", and walk away? Why won't he heed my many prompts to find another person to play with? Why is it so important to him to change someones negative opinion of him to a positive one?

To top it off, his teacher has asked for my help, but is rejecting every suggestion I have! I wanted his behaviorist to come in last Friday to observe: "NO! It's a Christmas Party and she won't get an accurate view of the problem!" I WAS THERE!! There was so much obsession going on I was close to tears!!!! I asked his afternoon aide to stand closer to Anthony while out on the playground, but because she's just an "access aide" and not a "1:1 aide" this is not possible.

I'm working so hard here not to be a defeatist, throw my hands in the air and say "I GIVE UP!!!!"

Here's my latest plan: Has anyone heard of the "Bill of Assertive Rights"? It's all about helping a person not to be passive or aggressive, but to work on learning and exercising their rights as a human being. It's about understanding what you have the right to and what you don't have the right to. For example: I have the right to my opinions, ideas and beliefs. I have a right to be happy. I have a right to tell you how I feel. I don't have a right to yell and scream at you.....and on and on.

So first, I need to get him to understand that learning to be assertive is about empowering him to protect his rights and establish self respect. I'm going to start by using puppets and dolls to show him the differences between submissive and aggressive behavior, and then begin to introduce the idea of assertive behavior.

I've found an acronym K.I.T.E. This is part of assertive training for children:

K= Know what you want
I=Use "I" messages vs. "You" messages (to prevent the other person from feeling attacked)
T=Tell others what you want firmly and repeatedly (you don't always get what you want the first time)
E=Expect change/Evaluate effectiveness

This is all of course at the very early stages. I don't know if or when there will be any improvement in his emotional/self respect status, but I think it's really worth a try. With Anthony, it will definitely take a lot of repeating role play and replays, and even scripting what he might say when confronted with negative speech.

I'll try to come back on here frequently to keep a log of our efforts.

Wish us luck! :o)

Monday, October 5, 2009

What do we do with "Middle School"?!

My son Anthony is turning 12 on December 8th, and is heading fast toward Middle School, and I'm very frightened!!! He's already said that he wants to be homeschooled next year, and I'm seriously beginning to look at that as a very real option.

But you know what I really want to do? I want to poll the folks out in the Antelope Valley where we reside, and find out just how many parents out here of special needs children are freaking out about Middle School also. Why, you might ask? Well, 3 big reasons come to mind: 1) How will Anthony navigate 6 different teachers in 6 different classes, when he's only in 1 room for the whole day now? 2) Anthony obssesses on 1 friend. This friend has been with him for the past 2 years. How will the shock of not having him around be? 3) HORMONES!!!! It's enough for a typical child to try to make it through Middle School with their hormones raging! How is my son going to handle his hormones through his world of autism? He can barely reason with anyone now! He can barely relay to me what incidents took place in his day now! This morning his teacher told me that I would be bald by the end of Middle School. I'm not willing to accept that stress, either for him or for us, his family.

So again, I need to ask: How many parents in the Antelope Valley are looking at these same fears, and becoming increasingly paranoid and paralyzed by them? Right now, I'm one of those parents, but I don't want to stay that way. Right now, I want to pull the blankets over my head and just cry from exhaustion. But I can't!!!! Anthony won't benefit in any way from that response.

My husband and I have decided to try to see how great the need is out here for families of children with special needs to be homeschooled through Middle School and even High School. I'm just going to dive in head first and see what I can uncover. Who knows!! We may even be able to start a school that is dedicated ONLY to those children who require special learning techniques. I can't think that it's only me so "who am I"? "How can I make a change"? What I really need to ask is "how can I NOT make a change"!?

I'll journal my findings here so check back often. And anyone who HAS any thoughts or ideas or needs as mentioned above, don't be afraid to speak out!

We can do it! We HAVE to do it!

~ Susan

Thursday, September 3, 2009

I found this great article on "Anger Management Techniques":

Our children are facing much more pressing types of daily stresses than most of us ever dealt with in our childhood. Just think of the kinds of horrific images our kids are exposed to on the nightly news: riots, hate crimes, random shootings, bombings, kidnappings, senseless murders. We're also seeing a troubling increase in bullying, name-calling, and prejudicial slurs among school children. (Not that you would allow your little ones to watch the news...but somehow they still get the info. anyway) Do these issues affect our children? "You bet they do," says Dr. Michele Borba, author of the new book, Building Moral Intelligence: The Seven Essential Virtues that Teach Kids to Do the Right Thing (Jossey-Bass Publishers, July 2001).

"The single greatest trend I've seen as a consultant to hundreds of schools over the past ten years," Borba says, "is the marked increase in anxiety and anger in our children. We shouldn't kid ourselves: the steady onslaught of stress and violence images is taking a major toll on our children's emotional and moral well-being."

What can parents do? Teach children the critical virtue of self-control so they know how to handle their emotions appropriately when faced with frustrations. In Building Moral Intelligence, Borba gives parents the following five strategies to teach children self-control so they can calm down and learn to handle their anger.

1. Model coolness when facing problems. Showing you can keep your cool, even in crisis, is an important way to help your children learn self-control. You send a clear message: "It may look like a crisis, but by staying cool, I'll be in a better position to solve the problem." Example is always the best teacher: "I need to take a deep breath and stay cool before I call the bank. I can't understand how my account is so overdrawn."

2. Develop a feeling vocabulary. Many kids display aggression because they simply don’t know how to express their frustrations any other way. They need an emotion vocabulary to express how they feel, and you can help your child develop one by creating a "feeling word" poster together. Here are a few: angry, upset, mad, frustrated, agitated, furious, apprehensive, tense, nervous, anxious, irritated, furious, ticked off, irate, incensed. Write them on a chart, hang it up, and when your child is angry, use the words so that he can apply them to real life: "Looks like you’re really angry. Want to talk about it?" Then keep adding emotion words to the list whenever new ones come up in those great "teachable moments" that come up throughout the day.

3. Identify anger-warning signs. Explain to your child that we all have our own little signs that warn us we’re getting angry, and that we should listen to them because they can help us stay out of trouble. Next, help your child recognize what specific warning signs she may have that tell her she’s starting to get upset. For example, "I talk louder. My cheeks get flushed. I clench my fists. My heart pounds. My mouth gets dry. I breathe faster. "Once she is aware of her signs, start pointing them out to her whenever she first starts to get frustrated: "Looks like you’re starting to get out of control." "Your hands are in a fist now. Do you feel yourself starting to get angry?" The more we help kids recognize those early warning signs when their anger is first triggered -- usually when they first show signs of tension and stress -- the better able they will be to calm themselves down and learn to regulate their own behavior.

4. Use self-talk to stay in control. Experts suggest that another way to help kids stay in control is to teach them to say affirmations-simple, positive messages-to themselves in stressful situations. Here are a few kids that can learn: "Stop and calm down," "Stay in control," "Take a deep breath," and "I can handle this." Suggest a few phrases to your child, then have her choose the one she feels most comfortable saying; help her rehearse it a few times each day. You might post the words she chooses throughout the house as a reminder. The more your child practices the affirmation, the greater the likelihood she will use it during a difficult situation in which she needs to stay cool and in control.

5. Teach abdominal breath control. Learning to breathe the right way -- especially in stressful situations -- is one of the most effective ways to stay in control, and so it’s an important technique to teach kids. Experts advise you to teach the relaxation method with your child sitting in a comfortable position, her back straight and pressed into a chair for support. Then show your child how to inhale slowly to a count of five ("one Mississippi, two Mississippi," and so on), pause for two counts, and then slowly breathe out the same way, again counting to five. Repeating the sequence creates maximum relaxation. The trick is to help your child learn to breathe very slowly and deeply and then practice it over and over in a calm, relaxed setting so that she can remember to use the technique during a stressful time.

Teaching kids to use self-control is just one of the many attributes of Dr. Borba's new book. The book covers this and literally hundreds of other ideas, stories, techniques, tips, and parenting strategies to help parents build moral strength in their children. Borba's practical, step-by-step advice will guide parents along their most important role: raising good, moral human beings.

The following video shows my 11-year-old son, Anthony who is on the spectrum, working through a friendship issue:

Tuesday, September 1, 2009

My Son Has No "Masks"

So to preface this post, I need to explain that I'm reading a book titled "Excuse me your life is waiting" by Lynn Grabhorn. It teaches that we are all "magnets" either bringing negative or positive things into our lives by the feelings and energy that we're putting out. If you walk around in your daily activities with a very negative attitude and approach to things the thought is that you'll receive nothing but negative experiences. "The electromagnetic vibrations I send out bring everything into my life. Good or bad. No exceptions." So in essence, like attracts like.

So great! So I like this idea and the first day I try it I'm really getting some positive things to come into my life through my business and with my relationships. Great! It works, and I'm only in chapter one! This is for me!

Then it it always does. My 11-year-old son with autism announces today, as we are leaving for school, that he'd like money to go to the book fair. Sure! I want to promote reading rather than the Wii or DS, so I give him $10.00 to buy a book. He's already packed about 10 books in his backpack loading it down to the point where I wouldn't want to carry it around, but he's fine with it.

On our drive to school he is happily discussing one of them from the back seat. It's going to be another great day I think. We're off to a good start.

We walk up to the gate and are greeted by the usual joyful exuberance of Ms. Gray. She's so wonderful to my son. She seems to have a genuine interest in him and his well-being. She throws her arms around him in her usual upbeat manner.

Anthony proceeds to tell Ms. Gray that he's going to buy a book at the book fair today. And that's when it all turns to poop! My stomach! It wrenches and tightens up inside of me! I know that my sweet little boy is about to explode not caring who sees! Poor Ms. Gray stands in a helpless state as her happy Anthony becomes a raging ball of fire!

We tell Anthony that we'll go to Barnes & Noble, something I had already told him the day before, but he doesn't hear us! He throws his backpack down shouting "I'm outta here!". My mind goes through so many different emotions and fears all at once, as I try to run after him to bring him back. "Oh my God, Susan! Everyone is watching! Once again you and Anthony have become the entertainment for the group. I want to run away and hide, but I can't! I need to hold it together! I need to be the "eye in the middle of the storm". This is not a little 3-year-old whose tantrums are expected as the norm. This is an 11-year-old boy who comes up to the shoulder of my 5'6" frame! They see right through me! They know that I'm a terrible mother. That I don't have a handle on my son! I can hear the screaming internal judgments coming from my little audience! "Why can't she control her kid! My God! He's acting like a baby! Where's the discipline in that family?".

I can't listen to that now. I've got to get ahold of Anthony and bring him back to the gate; back to his backpack he threw to the ground. I quickly tell him "Anthony, we will not be doing this today" (brilliant right?). "You will go back and pick up your backpack and get to your classroom, and we'll go to Barnes & Noble to find a book later".

I watch him slowly walk through the gate and up the walk. All the while realizing that it's my fault. I set him up for this meltdown by not making sure the book fair was still happening. If I'd check before we left the house this morning I could have avoided our "little show".

Then there's the pain and intense disappointment I know my son is feeling, and I collapse into myself as I walk back to the car.

So much for being a positive "magnet" today!

I call the school to warn them of his turmoil, and they assure me that they know all about it! He's already tantruming again in the classroom and needs to be removed to calm him down. They don't seem happy at all. "Perfect" I think to myself. "Now I've got them angry with me as well".

It's now 12:30 pm as I finish my thoughts here, and you know what I think?

Who gives a damn! Who cares what the rest of the world thinks? This is my SON and this is how he expresses himself. He does not worry about the outward appearances that we all get so caught up in. I can guarantee you he's not sitting at his desk right now thinking "boy I wonder what people are thinking of me. I'm so embarrassed." Nope! I'll tell you what he's thinking: He's thinking about Barnes & Noble! His main objective is to GET THAT BOOK!! His heart and mind are so pure. He doesn't put on any pretenses. He doesn't wear one face in public and then another, much different one at home. He is who he is. He is "perfectly Anthony". There is no guess work with him. You will always know right where you stand with him. No guess work involved.

He spends so much of his time trying to peer deeply into peoples eyes (literally getting close to their eyes to find the true mood of them). Why does he do this? Because the "normal" world wears so many different masks. We have masks for work. Masks for home. Masks for friends. Masks for acquaintances.

Anthony wears no mask. His honesty is brilliant and his heart is true. His expressions are strong and very clear to navigate.

Today he has been MY teacher. I will take off my many masks. I will walk exposed for the world to see me in all my fears and feelings of inadequacies. Today I will know my friends who are true. My friends who will not run and hide. Today I am purely me. Today my son will have no guess work around my feelings, and he will feel safe.


Monday, August 31, 2009

Hello. My name is Susan and welcome to my blog! I've never had a blog before, and didn't really understand the point of one. But now that I'm working with other children with special needs, I decided to journal some of my experiences as well as impart some of my "wisdom" along the way.

Here's a little about me:

I have been married to my husband, Vince for almost 18 years now. He is my very best friend and someone I know I can turn to in crisis without being judged. He is quite often the sound mind in our family. I have a tendency to be more worried about things where my Vince can see it for what it is, and help me to not only except it, but find the best part of it.

We have two little boys: Anthony our 11-year-old and Gianni our 7-year-old. When Anthony was 2 years 9 months he was diagnosed with autism. I remember being numb walking through the Kaiser Permanente parking lot back to our car. I thought autism meant you couldn’t speak! That a person would just sit and spin! My son speaks very well! I soon realized that autism is a very wide spectrum made up of a lot of developmental issues. At that time Anthony could not take having people speak in unison. He would scream, hit, pull hair or butt his own head. He was extremely intrusive. It was not enough for Anthony to sit with a person. It was almost like he had to be inside of that person. He needed to get very close to their eyes to read what was in their heart. He lacked understanding of others’ feelings. If he didn’t feel the pain, you surely did not feel it either. He had no “turn-off” button. Sleep did not come for him in the evening. When he did finally get to sleep, he would wake up frequently in the night screaming and thrashing, and we would need to go in and calm him and get him back to sleep. Anthony would carry a bin of toys with him everywhere (literally everywhere). If any one of these toys was missing he would rage in a panic until the toy was found. We attempted to have him in 3 different preschools, but was kicked out of each one. The last one said that they handled children with his “undiagnosed” issues all the time, but they still sent him home. They took me to their office and suggested that he be tested by the school district which we did. We then took him to Kaiser Permanente where he was given is diagnosis of autism. From there we hooked up with the Regional Center who did their own testing and agreed with Kaiser Permanente’s diagnosis. The first thing we learned of was “respite”! A way to have a break, know that our son was in good hands with a person who would be patient with Anthony. At first Anthony would scream for hours when we were gone. But gradually he began to except it and even tell us on occasion to have a good time, albeit through tears. We then put Anthony in special day classes at Santa Clarita Elementary. This was a wonderful time for us as we began to grow as a family navigating the autism world. Anthony is now 11-years-old and is absolutely amazing. He has come very far. He still carries his bin of toys around with him, and keeps them on his bed when he sleeps. If a toy is lost now he will still panic, but tries his very best to keep it in check while we search for the toy. At this point in Anthony’s life, he struggles with friendships (being obsessive with an individual person), anxieties, focus and temper tantrums. But it should be noted that has come so far from even one year ago. He has an amazingly huge heart! He has concern for others when he feels he may have hurt them. He is developing a tremendous wit and has the most contagious laugh you will ever encounter! We can’t imagine life without this little person and feel we have learned so much from him!

Our 7-year-old Gianni was born on October 27, 2001. When we first conceived Gianni, we were very excited, but also secretly concerned. Would we have another child with autism? How would we handle having 2 children on the spectrum? It was so delightful to watch the 2 boys play together and to watch Anthony even act as big brother to his baby brother on occasion. We realized that at 3-years-old Gianni was to remain very neurotypical. Unlike his big brother, Gianni was always able to recover from disappointments or frustrations with such ease! He was navigating this world beautifully at such an early age. We found ourselves saying “so this is how other kids are!”. Gianni has always been very creative. One of his favorite activities is to sit with “Play-dough”. He can sit for hours creating things with “Play-dough” and then having his creations involved in very intense play with some of the funniest sounds! He’s very passionate in all his play. He plays very hard. We are forever having to collect all of the families blankets back out of the playroom at the end of the day after Gianni has used them all to build his elaborate forts! We will hear him frequently up in the playroom engaged in very intensive battles with his toys. It’s the best sound to hear. Sometimes my husband and I will just be laughing downstairs as we listen. Gianni also loves “dress up”. He has many costumes and has even created is own “nerdy” character whom he’s named “Periwinkle”. My husband and I were amazed at his detail both with his costuming and the personality he gave this character. He has become a huge fan of magic after watching his daddy perform. He has recently auditioned for the Talent Show at Quartz Hill Elementary and was accepted to participate in the show. It seems to us that, at an early age, Gianni possesses a very good understanding of comedic timing. He may end up being in theatre one day. He and daddy are currently building a Go-Kart and just having an amazing time working together.

Both our boys have their own unique and very special relationship with their father. Vince calls one “buddy” and the other “pal”, and they relish their nicknames and their place in their dad’s heart. I love seeing them together, and feel very blessed every time Vince says “hey, get the boys ready, I’ll be home soon. We’re going to go here or there”. To have a father for my children who wants to be part of their lives without being directed to do so, is huge to me!

Like any family’s, our day can be intensely crazy. It can be full of major disappointments and helping each other through anger or sadness. Or it can be very funny with laughter and rolling around on the floor. The key though is that at the end of the day, we know we’ll have our bedtime stories, songs and what daddy has dubbed “cheer” time. “Cheer” time is where they each get a little cup of juice or water and they cheer to each other’s day. It used to be me who handled the bedtime routine, but it has slowly become a time for daddy and the boys to bond. At first I felt guilty for not being the one to do this. I’m their mom! I should be putting them down! Then I asked myself “Why”? Why can’t they get the same love and bonding from him as well? So I’ve backed off from those fears and just relish in listening from a distance. It isn’t that I can’t go in and be part of it, but I don’t want to take away from this time for them.

I could go on and on, and turn this into a book, but I’ll stop here. Who knows. Maybe someday I WILL write a book!

Check back with me from time to time. I'll be posting new adventures with Anthony as we navigate this amazing world of Autism. :o)

As parents of a child with developmental disabilities we have found it increasingly difficult to find strong respite care for our son. We wanted a group that would not only provide good care for him while we were gone, but that would implement, successfully, the different strategies useful in achieving some of the goals and dreams we have for our little boy. As parents, we know that the most normal, independent, and least restrictive residential environment for any young person is with their own family. We also know that there will be times when family members need relief from the daily responsibility of caring for a family member with a developmental disability. When there is no time for yourself as the caregiver, and no one to turn to for assistance in the event of an emergency, frustration, fatigue and/or isolation can begin to take over. Having temporary relief from the responsibilities of caring for an individual with developmental disabilities can allow families to spend some relaxed time away from home, make and keep appointments, attend meetings, or take short vacations.

Having our own special needs child, we know all too well, the need for parents to have a time to regroup. A chance to gain new strengths or just take your own "time out"! We also know all too well how important it is that the person we entrust our son to is not just sitting there like a "lump on a log" waiting for us to return. We want our children engaged. We want our children to have positive and loving interaction, so that his time away from us is meaningful and uplifting.
For these reasons we decided to create our own respite services program, and are very pleased to be able to offer it to you and your family! Our children are our future and we believe they deserve our very best to help them in their journey!

~Vince and Susan