The light at the end of the tunnel

We are finally experiencing 'the calm' after having a storm for 2 years. Adrian's schedule has been anything but routine and yet Liam's world is not disrupted by this anymore. Adrian can get Liam off the bus and he's greeted with a smile. Liam can walk in the house and things are not the way he left them and not get hung up on something changing in the environment. We have faded his reinforcements so that now his desired behaviors are natural and do not need as many reinforcements anymore. I believe we have found our balance and we can only grow from here. I still continue to seek out all the ABA workshops and books that I can so I can keep us on track. We did try ABA Services in the home over the last 4 months but it turns out that it was a year too late. We pretty much handled the severe maladaptive behaviors and the Self Injurious Behaviors on our own and by the time Insurance approved Services for us, it wasn't very beneficial to us. I just never thought that Liam or I had learned anything from those Services.

Here's some examples of how life has changed for us...
We started out having dinosaur cut PB&J sandwiches waiting on his table after school. Then I had them already made but waiting in the kitchen. Next I waited until he got home to make them, so he had to wait a little bit. Finally I can give him two choices of a snack after school and he doesn't have them until an hour after he's home.

We started out having 'fits' for 4 hours because Daddy was home before Liam came home off the bus. Now Daddy can go get him off the bus and Liam welcomes the surprise of Daddy being home.

We started out not being able to have Gwyn come with me to get him off the bus, or she couldn't be hanging in the living room when he got home. Gwyn had to be away from Liam for at least an hour after he came home. Now he is happy to see Gwyn and tell her about his day.

We still have some things to work on but his Self Injurious Behaviors have diminished. We still have maladaptive behaviors when something is spur of the moment or when I am not in the frame of mind to have reinforcements or social stories ready for him, but they have greatly decreased. We went out after school to McDonald's and ate it at the park and he was the happiest child and he felt special for being able to do something like this, instead of having a 'fit' and crying all the way until we all went home full of anxiety and regret for even trying to do something so out of routine. It really touches my
heart when we can experience something so little to many people but it's huge to us, we waited 4 years to be able to have McDonald's in the Park and have him run around without a care in the world.

Liam has now discovered how to live in the moment. (to some extent) and not get carried away by anxieties and emotions.

Liam's full diagnoses as of May 2011:

• PDD-NOS, r/o Asperger's Syndrome

• Obsessive Compulsive Disorder (OCD)

• Anxiety Disorder

20 Minutes Home and Everyone is Crying.

Yesterday after school, Liam came home and looked at flowers and bees as we walked up the driveway. As soon as he stepped foot in the house he started to breathe short while stomping his feet because he saw Adrian was home watching TV on the couch. As I pulled his shoes off he started to cry and get angry about anything that was done or said. He choked past his tears and said he wanted a drink and crackers but his actions said the opposite. I went in the kitchen to get him his drink and crackers and he followed me in the kitchen, still crying. Adrian came in the kitchen and Liam screamed, stomped his feet and hid between the cabinet and my legs. I told Liam he needs to calm down before he gets his drink and crackers (I knew he would throw them on the floor in a fit), I talked to him calmly and said he needs to calm down and talk to me instead of crying and screaming. I walked away (acting like I was busy) so that he could have a moment, but that made his reaction worse, falling on the floor, slapping his face, kicking his feet. I decided to ignore it, if I confronted him it would only escalate and we would both get too emotional. So I left the room feeling like I don't know what to do, I don't know why I'm not used to this by now. Adrian is with Gwyn and has taken her outside to get away from the screams. It's been 10 minutes now and still Liam is screaming and crying and I'm at a loss for what to do. Adrian decided to put him on his padded floor in his room and turned to walk out and Liam pushed his humidifier, full of water, to the ground. By this time I'm crying (for some reason I let this get to me this time) and confused on how to handle this. We cleaned up the floor and took all the mats outside to dry and Liam is still crying and now Gwyn has started to get upset. 20 minutes has passed and now 3 of us are crying...Liam was put in time out for 9 minutes (3 times he refused to say sorry) and finally he says "I'm sorry to Mommy" so we take that as an apology even though he was avoiding the apology to Adrian, I just decided not to pick that fight at this time. So I tell him that since he spilled the water and got it all over his clothes that he needs to take a bath now, he starts to get upset again and I said in an assertive voice "Liam, you pushed over the humidifier and got water all over your clothes. You already said you're sorry and now we are going to take a bath and put on dry clothes." He calmed down and let me undress him. After the bath he talked about how he pushed the humidifier and was crying and then he went out and ate crackers, had a drink and acted like he was fine. He even talked to Adrian and was being silly with Adrian, like there was no issue at all just a couple minutes ago on how he didn't even want to see Daddy. The rest of the night was quiet and no conflicts until it was time to brush his teeth, then he cried and fell on the floor. After I handled that then he went to bed and yelled "Momma, Momma" for about 10 minutes then he gave up and went to bed.

I knew that these emotional outbursts after school would be back, he had such a normal time coming home from school for about 2 months (February, March) but the pattern is usually carefree "normal" days for 1-2 weeks and "emotionally troubled" days for 3-4 weeks. This time we had carefree "normal" days for 2 months, so now I believe we are on the emotionally troubled days for about 4 months now.

It's difficult to let my guard down when he is carefree because I know that a couple days he will have emotionally troubled days and I have to be prepared for those days, otherwise I'm thrown off and I don't handle situations correctly. I feel more pressure now because I'm trying to explain Liam's emotional breakdowns and ticks to Adrian, but sometimes I don't even know the answers. I feel like I'm constantly pleading Liam's case to Adrian so that Adrian doesn't have negative feelings towards Liam. I guess I'm trying hard to build good relationships between Liam and Adrian, Liam and Gwyn, and Liam and myself.

It's hard for me to be this honest because I know I'm making our "family business" public but it helps me deal with the situations and it's the truth.

Head banging and restraining are NOT a thing of the past!

Liam had a head banging incident over this last weekend. We were 9 months of "head banging free" behavior. I was so beside myself and shocked when I walked in and he had a knot on his forehead. You figure I would be prepared for this behavior but I had written it off as a behavior of the past. I thought we solved this and he wouldn't have even resorted back to this behavior but I guess it will never be completely out of the picture.

My actions that I have to take are: (This is to refresh my memory)

1. Keep my eyes on him when he gets angry and make sure his anger doesn't escalate to rage

If it does resort to a "rage fit", I have to: (This is to refresh my memory)

1. Remember to restrain him until he's calmed.



2. Have no emotions during this time.



3. Keep a calm and assertive voice.



4. Ask no questions, give no hugs, have no conversations with him at this time, until he's calmed.

Nightmare...
Liam also got up in the middle of the night screaming for me and when I went in to see what was the matter he was just screaming and crying and kicking and punching his fists. I couldn't clam him down, he was hyperventalating and was just getting worse. Adrian had to come in and restrain him for 10 minutes until he clamed down and I went back in and asked Liam what happened and he replied "I didn't do it!" and I asked "you didn't do what?" and he replied "I didn't stab myself!" I didn't even have a reply for that, I just hugged him and said everything is ok and that he just had a bad dream. I don't even know where he even came up with the word "stab" no one uses it at home, must be from school, but still it is an odd thing for a 3.5 year old to dream about and have such a violent reaction after he's awake.

No Daddy No!

We are so happy to have Adrian back in our lives after being deployed for a year. He's been home for about a month now and our lives have been anything but routine ever since. School has been out for Liam; Adrian comes home from work at different times everyday; Liam, Gwyn and I have been sick for the last week; nothing is normal anymore. Liam has enjoyed playing with Adrian for the first weeks of his return but now Liam is rejecting Adrian and won't even be in the same room as Adrian so he doesn't have to confront him. With me being sick I have needed Adrian's help with taking care of the kids but Liam won't have any part of daddy helping him. In the picture above, I had to persuade Liam to go see the statue with daddy but Liam wasn't happy that he had to leave me behind and I wouldn't be holding his hand. So Liam went but didn't want to be near or hold daddy's hand. Every little thing is an issue with Liam if daddy has to help or be involved. When I asked him why can't daddy help he replied "Because daddy's too different!" He is now back to square one with Adrian, before Adrian deployed a year ago, Liam would have fits because Adrian would get him out of the car instead of me. I have talked to Liam and told him social stories about "When daddy is home, he will drive the car...when daddy is home, he will help you with your shoes..." and so on. But so far the social stories are not working, and I haven't been on "my game" since I've been sick. Now I'm getting better and I'm trying to come up with new techniques to incorporate good behavior responses and bad behavior responses and that Liam has a choice to respond with good behavior and get a reward. In fact, after I write this blog, I will be working on some new reward systems for him. Right now if Adrian walks into Liam's bedroom Liam will scream "NO, DADDY, NO! I DON'T WANT YOU! I WANT MOMMY! GO AWAY!" and he'll cry and scream as if he were getting beaten if Adrian continues. Adrian has been really understanding about it, even though I know it breaks his heart to hear Liam protest so angrily about him. But it's not that Liam doesn't like Adrian, it's that Liam is not used to Adrian being the person who helps him with his pajamas, or put him to bed. He is used to me doing all of this and it's easy if I do it because he knows how to socialize with me and he knows what to expect with me, he doesn't know what to expect with Adrian. Adrian could put his left foot in the sock first instead of his right foot. Adrian could put his pants on before his shirt is put on. All these possibilities are unpredictable is Adrian does them but I know exactly what to do and how Liam likes to do things without him having to worry about it. It's like all Liam does is worry when Adrian is around and when Liam worries, he isn't carefree and he doesn't want to have fun or play.

The Second Time Through!

We went on a spur of the moment trip to Washington D.C. over Easter weekend to attend The White House Easter Egg Roll event. We, of course, did all the sight-seeing that we could do in 2 days. We visited all the monuments and memorials and when we went through the Franklin Roosevelt Memorial the first time, Liam did not want to participate in picture taking or see the statues up close. So we went through and saw the whole memorial and then we turned around and went back through but this time Liam was excited to participate and lok at all the statues and touch them. The first time through was like a trial run for him to see what it was and the second time through he was comfortable and enjoyed himself.

Accomplishments by the many!!!

We visited old family friends that Liam has never met and he had a ball! He let them pick him up, take his shoes off, and help him swing without any hesitation! His whole attitude was carefree and his personality is really shining through these last 6 weeks. I can't believe how flexible he was during this trip with no routine and nothing was familiar. He smiled and laughed the whole time! He chased a goat, went swinging, and jumped on a trampoline without any second thoughts or without hesitating. All of this progress is really amazing and just a dream come true. He is open to knew things and to having fun like a little boy should! I'm so proud at his accomplishments and he is now undressing ALL BY HIMSELF! He can take socks off, and pants and shirts...it's unbelievable that last week he struggled for an hour with his sock! Now he's a professional!

Gluten Free/Casein Free Diet (GFCF Diet)

When I first heard about this diet I didn't think it was very 'do-able' for us because Liam's main diet is very limited, and wouldn't you know that it all contains wheat and/or dairy. But then a friend, who also has a child with Asperger's Syndrome, told me about a book called Healing the New Childhood Epidemics: Autism, ADHD, Asthma, and Allergies: The Groundbreaking Program for the 4-A Disorders by Kenneth Bock, Cameron Stauth. Reading this book, that is full of scientific reasons and explanations for the sudden 'outbreak' of Autism, really has me thinking. I have seen improvement with Liam since he's attended Preschool and with our Reward System in place. But what if by changing his diet he can conscentrate a little more, improve his repetitive behaviors, make his speech a little clearer, and maybe even rid him of his nummular eczema and his inflamation on his cheeks. I feel that if I can help him in any way then why not try it?! I have started to switch him over to gluten free cookies (with no complaints) and I'm gradually going to introduce more gluten free products and then hopefully after the break in his school schedule in March then I can send him to school with his own lunches. Atleast there's more choices in the stores for buying gluten free/casein free foods. I have bought gluten/casein free breakfast bars, cookies, noodles, and whole grain bread mix. The thing that will be the hardest for him is his love for cheese! I'm hoping that with this new exploration in food choices that he will be more open to foods and maybe helping his symptoms and giving him a better life. Liam has gone from being bogged down with such emotion that he was hurting, to being free and acting like a kid should. We go through a pattern of 2 weeks of a 'normal' acting kid to 3 weeks of an emotionally tortured kid. I am trying my hardest to have that silly, imaginitive, smart kid come out and play every day!

Our Reward Techniques.

The Happy Face Tokens...

Whenever Liam expresses good manners, such as 'Please', 'Thank you' or 'excuse me', he receives a happy face token and when he collects 6 tokens then he can buy a car. He usually reaches his 6 tokens by the weekend. This really encourages good behavior and manners without having to remind him much.

The Ribbons...

Liam gets a ribbon every time he accomplishes something new or does something by himself. I write down his accomplishment and he gets to stick it up and when he reaches 5 ribbons (hopefully by Monday) then he gets to take it to school and share with the class.

The Stocking...

This is to encourage daily routines such as brush teeth, bath time, but it's mainly used for potty time. I made cards with pictures of the act that I want him to do and then I put it in his stocking when it's time to do something and I say, "Go check your stocking!" and he will pull out a card and then he will go do what the card says and when he comes back then I have a reward waiting for him inside the stocking, like a Hershey kiss, a sweetheart, or some little candy reward, for doing his task. This helps when he doesn't want to take orders directly from me and so I make a card up and put it in there and he will follow it without arguing.

I really try to think of new reward techniques so that he is always looking forward to his praise and rewards. He really appreciates positive reinforcement now. I used to try to give him a candy or sticker and he would freak out and have a melt-down over a reward. Now he understands and the stocking has made him look forward to surprises because he doesn't know what he will get. Surprises were hard for Liam to handle but this has helped him understand that surprises are good and are suppose to make you feel happy and excited. I just hope I can keep the ideas going so I can change it up and keep his interest because we are on a roll!

"I can ride my motorcycle!"

Liam finally got the hang of his tricycle! He was so proud of himself! He has had trouble
trying to figure out how to peddle and get himself going and keep going. He also learned, the very next day, how to turn the tricycle. He has learned how to catch a ball, jump with both legs off the floor, and ride a tricycle all in this year, mostly because of the influence of pre-school and his teacher. In this photo he has the happiest face I have ever seen in a year and a half. He is finally living in the moment and he has let go of his "inner-struggle" with himself. Adrian will be so shocked at how far Liam has come in this past year. He has really begun to show more confidence and carefree personality, not anxious or overwhelmed at all. He will let me praise him and not get upset. He used to get mad and have melt-downs every time I would praise him or give him any positive reinforcement. Now he seeks out praise and is proud of himself. Learning to ride the tricycle is a huge accomplishment for Liam, I'm so proud of him and how much progress he has made.

Inappropriate Play...working progress...

I have constant eyes on how Liam plays with Gwyn. I have a camera in his room that has a portable monitor so I can see what he is doing at all times. Now that Gwyn is older and into more things, I have to know what they are doing. Liam doesn't know how to play with Gwyn yet. His usual behavior with her is to get in her face and yell "aaahhh" in her face (like in this picture) and then flap his hands around. He doesn't know that he can't sit on her like a chair or step on her like a stool. He has no knowledge that he can hurt her and he doesn't care when she cries. AS children have no empathy for others and they fail to make the distinction between accidental and deliberate acts. When Gwyn touches his shoulder he yells at her and tells me "Tell her NO! She hit me!" I have to always remind him that it was an accident but he will repeat it over and over until you acknowledge his complaint and talk to Gwyn about not hitting. The one moment I didn't have an eye on them he ended up pushing her down and she bit straight through her lip, making a scar, all because she was touching his chair and that was the only way he knew to respond. He wasn't angry with her, he was just solving a problem. We are still working on this behavior just by reinforcing good behavior when he is being appropriate and letting him know when he is inappropriate. He gets a happy face token whenever he displays good behavior and if he collects 7 by the end of the week he gets to buy a car...his favorite "special interest".

Daddy Larry and Little Daddy Larry.

We went to the Zoo with Nana and Daddy Larry. The excitement of all the animals and the outdoors was plenty of excitement for all the children, except for Liam. Liam was more interested in copying Daddy Larry's walk, stride, pace, and movement. Only Daddy Larry could talk to Liam the whole time, if I suggested anything it was shot down quickly and almost resulted in a melt-down. Daddy Larry would suggest the same thing and he would quietly go along with it. It was amazing to see how intent Liam was on watching Daddy Larry's feet and arms and how well he mimicked the motion, and kept in stride with him. I later found out, in Tony Attwood's book, that AS children are great mimics, and portray themselves as the other person. This is why Liam would just stare and watch children play for hours (4 hours at childcare) but would not have any intention in participating because in his mind he was participating through the other children. It was very interesting to read that AS children play through other children, while they don't physically play along, they imagine themselves as the other children. This was almost calming for Liam to concentrate on walking and acting like Daddy Larry, he didn't talk or say a word the whole time he was mimicking. If you notice in the top right photo that he sits there with a serious face and is avoiding the camera, he was in his mimic mode and can't stop and pose for a picture.

The beginning of head banging out of anger.

This is Liam banging his head out of anger. This only shows a brief glimpse of the severity of his tantrums, I didn't want him to do it for long, but I just had to video tape it for a record. To break him of this behavior, I sat in his room for 3 hours every night and wouldn't give any attention and when he started to bang his head I would get up and put him back on his pillow and sit back down without saying a word or looking at him. I did this for 2 weeks and he finally stopped this behavior for bedtime. But he still acted out when he was mad during the day and I would restrain him for hours until he stopped fighting me.

Hush little baby...

Liam's first 4-5 months of life consisted of eating and the 5 S's.

1. Swaddle
2. Shush
3. Side/stomach (laying)
   Swing
   Suck (pacifier)
   
   If not done in this order, he could not be soothed to sleep. I found this pattern when he was 2 months old. He would only respond to dramatic and over stimulation movement. We went through 3 swings because the motors all burned out on them...all brand new. The noise in his room was a loud ocean noise that we had on constantly until he was 1 year or maybe alittle older. He would never 'cry himself to sleep' he would just cry for 3 hours. I used to say around 3 months old that he's going to need to learn anger management when he gets older, some of that is true...because he had absolutely no instinct to self soothe. I had to soothe him to get him calm enough and then get him to sleep before putting him to bed. I knew he was demanding but I just thought this was normal behavior, not realizing that he truly had difficulty with his emotions. Now I know it's all neurological and that it's not just a stubborn streak. This would have been helpful to know if the pediatrician took my complaints serious. I did research and found the 5 S's technique and it worked right away and I thought, WOW, I can maybe get some sleep now, and he can rest and not be exhausted. This was very helpful info that I was grateful to have, even if I didn't know the cause of all this behavior at the time.

When is it MORE than the TERRIBLE TWOS?

I remember asking this question, to myself, everyday. Liam started acting out emotionally and physically harming himself. In this picture you can see his bruise on his forehead from banging his head on his crib. He had a constant bruise on his head when he was 2-2.5 years old. People at grocery stores would notice and say "oh my, what happened?!" and it got to the point that I was scared that I would be blamed for this bruising. I kept thinking to myself, I know terrible twos are suppose to be terrible, but how terrible? I would ask his pediatricians and they would tell me that he wouldn't bang his head hard enough to damage himself, but I saw him when he was in that 'state of mind' and it was scary. You can't tell me that bruising your head isn't going to damage anything. My husband even thought about getting him a helmet, but I was against it because I didn't want to mask over the problem and let him keep banging his head, I wanted to fix the action. I ended up physically restraining him when he was full of rage for 2-4 hours, until he calmed down. In this picture, you will also see 'the face' he gives you when he's uncomfortable, confused, overwhelmed, and anxious. I just noticed this connection about 'the face' to emotional outbursts that would happen maybe right after, or hours after. I showed this to his teacher and today when he gives her 'the face' she notices and takes him out in the hallway to discuss his feeling. What a difference that has made in our lives. Less emotional outbursts today, and instead of tantrums with head banging, it's totally prevented and he hasn't had an episode in 7 months. His emotional outbursts are shorter and last maybe an hour, instead of 2-4 hours (sometimes it would be all day). Our lives have changed within this last year because I kept pushing with the doctors until I had him tested and he qualified for the Early-Intervention Program with CDSA, which then lead to Early-In Preschool Program transition. He was labelled "developmentally delayed in speech and social behavior, with behavior problems". He started speaking at the normal age but it was limited and 'made up' language. When he would say a word, he stuck with it, no matter if it was right or not. YahYow-water, KahKu-sucker, DahDooDoo-helicopter, DahDah-Rosey(our dog), Kye-car. His speech has come a long way, he has trouble saying words and you can tell he has to think for a minute about what he is going to say but his language sounds more like the word that the made up version. Preschool has been the best progress for him. ABA therapies, Play therapies, At home therapy visits, speech therapy (outside of school), none of this helped Liam at all...It wasn't until 3 weeks into Preschool that he had progress at school and engaged in activities. The teacher described him to have "Dr. Jekyll, Mr. Hyde" conflicts with himself. He would not let himself participate but you could see he wanted to. Before Preschool... When I dropped him off at day care for 4 hours (only to get him out and socialize) he would stand in the same spot that I left him and not move until I came to get him. Now he has one friend at school and participates in most activities with nothing holding him back, no internal conflicts.

some of Liam's behaviors that should have sparked interest and concerns in doctors:

• headbanging to the point of bruising
• "rage fits" that last 2-4 hours
• making up own language
• everything ending in a melt-down (we had 5 melt-downs a day)
• withdrawn and overwhelmed by other kids his age
• repeating the same question every 2 minutes after given an answer
• hard time with transition
• needs a very structured routine (only mommy fixes my breakfast, not daddy)
• When angry it escalated to RAGE
• Personality at school is different than that of the one at home (behavior problems at home, none at school)

I kept pursuing these issues because I had support from family and friends that dealt with special needs children and autism. Everyone kept reassuring me that this is not normal and to keep pushing the doctors until I find one that listens and explores more. I'm grateful for that support because it's easy to blame yourself and think that maybe you haven't given discipline enough or maybe you let him get away with things too long. But the people who supported me, knew that I wasn't a push over, and I had structure and routine. I know I asked myself many times "Have I done a terrible job? How could I have raised such a brat." I couldn't help but think it was my fault, but then his teacher suggested Asperger's in passing and I did research and came across a book by Tony Attwood, "The Complete Guide to Asperger's Syndrome" and there I read the first 2 chapters and found hope. It was like the book was written from a study of Liam! It explained every behavior and then gave instruction on how to address such behavior. It was such a relief to have explanation on why your child acts the way he does and to get an understanding of your child that will now lead you to building trust and security in our relationship. Now he trusts that I understand what he's going through and how to handle it.

Introducing myself and my family

My name is Jenn, I'm 29 years old and was on the road to becoming a graphic designer when my life took a turn I never planned on, having a family. I grew up working since I was 16 and went to college and planned out my whole career, little did I know that you can only plan so much of your life and that now I'm a stay at home mom (which is the hardest and most satisfying experience than any job that I've had) and wife to a soldier. I have an amazing husband who is in the Army and two wonderful kids. Liam who is 3 years and recently diagnosed with ASD, and Gwyneth who is 1 and has only been with her dad for 4 months before a year long deployment disrupted our lives. I guess I'm writing this for myself, and to help someone going through similar situations, and hopefully learning things from others. We have gone through so much in this last year, and all the while my husband has been living his life , the best he can, over-seas, in hostile territory. I thought of myself as independent my whole life ...until... before I knew it we have made a family of four and I depend on them for love, support, and encouragement. No matter how independent you are in the world, you always are dependent on your loved ones in one way or another. I never thought this until put in the situation of a deployment of my best friend and husband.

I have learned to never let doctors over-look your concerns for your children. If you have a question, you need to be persistant until you are satisfied with the answer, if you aren't, then find another doctor. I've gone through so many pediatricians until I recently found one that listens and explores your questions even if they don't know the answers, and refer you to someone that may.