In the Blink of an Eye... Wandering

Today I'm going to talk about an important topic in regards to ASD's, something that gets extremely little press: wandering. It is a reality in our life, and many others with children who are on the spectrum.

A few months ago Daniel slipped under the garage door (which was only opened about 6"). He was gone within seconds of me turning around to get something. When I realized he was gone (about a minute later - if that), I opened the garage door and he was nowhere in sight. Nothing has ever made my heart pound so hard, my body immediately get hot and feel so sick to my stomach so quickly. We live in a gated community, but, your mind goes in every direction. Which way did he go, is there anything he can fall into, is the gate open, etc.

After checking and notifying my husband he had slipped under the door, I called my sister (who, thank God, live 2 doors down). They, along with my nieces and brother-in-law fan out. Going down the inner courtyard - between two streets - they found him quickly. I was beside myself, looking from the garage so I could stay close to keep an eye on Anthony. Then I see him appear between the buildings and luckily my sister saw him, called his name, he turned to her, smiled and ran to her. She scooped him up and gave him to my husband, who brought him home. Then, about a few weeks later, he learned how to remove the child safety doorknob and tried to get out again. Luckily we caught him. We have since purchased a gps unit called the "pocketfinder". It's relatively inexpensive: $149.95 + tax & shipping. There is a monthly fee of  $ 12.95 for the first unit, and less for each additional one.This is available at:    http://www.pocketfinder.com/

                                                    

We have attached a unit to our boys' pants when they leave the house. We clip it to a side, back belt loop and tuck it in their rear pocket. (Luckily they're currently wearing jeans). We like this unit because we can track them on our smart phones, iPad/iPod or the computer. We can set zones so that if they leave an area, we will receive a notification via text message.  As you can tell, I am quite taken with this unit.

I have learned that kids with asd (Autism Spectrum Disorder) will generally head for somewhere they normally go with someone else, to something they've seen that caught their attention and really want to go to. Then, maybe something catches their eye, or they get turned around and end up far away before anyone finds them. As parents of children on the spectrum we know that you have to constantly watch our children, but we've also learned that it only takes a few seconds of distraction for a little one to slip away. We know that no matter what we do, we cannot watch our children 24/7, at the very least, you have to blink. That's how most wanderings or missing kiddos happen... in the blink of an eye.

Since this has happened to us, I have researched all I could on ASD (Autism Spectrum Disorder) wanderings, elopements, escapes, runaways... whatever you want to call it. What I have found is quite alarming to me. Several studies and articles have been written on the subject, yet the only time it seems to be mentioned publicly is when a child goes missing and makes the news. I think more people need to be made aware of the real danger, parents should be educated if they have kiddos on the spectrum to be aware of the reality that it can happen to anyone. Several surveys I've seen show:

• Wanderings begin around age 4
• Up to 49% of children with ASD will wander (elope, run away/dart)
• Almost 1/2 - 53% of those children who wandered were gone long enough to cause concern
• Almost 1/4 - 24% of the kiddos who wandered involved close calls with drowning

The good news is there is a lot of information and products available that can help reduce the risk of wanderings. A few ideas we have implented are:

• a double keyed deadbolt - so you have to have the key to unlock it from the inside, and we keep the key hung up out of reach of our little ones
• as noted before, we have gotten the GPS units for when they leave the home
• we have an alarm that we can set that will go off when a door or window is opened
• we have a "tether" that we can use which attaches to the kiddos to help minimize "darting/running" away

I have found out some smart recommendations to help us be prepared in the event that either of our boys - "wander" and we need help:

• contact your local police department and let them know that you have an autistic child in your home that has a tendency for wandering
• always keep a current picture of your child handy, if you have a phone that has a camera, keep a picture on it  - like we don't already   :)
• keep the numbers of your local news stations written down
• keep a list of the local pools, water areas that your child may have access to noted
• keep a list of your child's favorite place to go
• VERY IMPORTANT FOR YOUR CHILD: let the police know what calms your child, so they may get your child to come to them so they can be brought home (a stuffed toy, a favorite food, etc)

We even have medic alert bracelets on our boys that shows their medical issues, allergies and we have noted AUTISM on them as well. On the back we have our emergency phone numbers. The truth is we all do everything we can to keep our little ones safe.

A smart person once said: "An ounce of prevention is worth a pound of cure." Stay safe and spread the word.

God Bless.

ABA Basics

I've mentioned ABA (Applied Behavior Analysis) before and a little about what it is. Short of a little miracle - for parents, is the science of controlling and predicting behavior. The person who came up with it and how to apply it, truly was inspired and blessed. It is a process that is amazing to watch, and when you have good behavior instructors working with the kids, you can learn almost as much as your children. We have been blessed to be working with a company, Holdsambeck and Associates, that not only allows but encourages parental involvement. I realize that we are blessed so that I am able to stay home to teach, learn from and raise our boys. I have learned more about how to deal with them as a parent in the past two years with ABA than the almost 5 years they have been with us.

Watching the instructors work with the boys - they have a remarkable amount of patience - and I have learned so much. I have been at my wits end with each of the boys as to how to discipline them. During the foster/adopt program we went through every class you could imagine available at the local colleges on child rearing and discipline.  It is not at all the same as disciplining a typical child. We have tried time outs, reverse psychology, taking away items - most turned out to be a joke in our case. Truth be told, none of them worked in any way shape or form. The only thing that has worked, I learned from the ABA. They reward good behavior, firmly say no to the bad unwanted behavior, and redirect them back to what they are to be doing.

                                                                                

Another thing I learned was from another behavior instructor, from another department of Holdsambeck, and that is we need to remember to acknowledge good behavior when we can. If your child(ren) are playing quietly in another room, and of course if they're too quiet you check on them (just to be sure they're not doing something they shouldn't be) - if they are playing nicely, acknowledge that. You can say something like "good playing quietly" or "nice playing" something positive to acknowledge that you know they are doing good. To often we punish the improper behavior (and of course we need to redirect their behavior), but most of us forget to acknowledge when our kiddos are being good.

The wonderful thing about being involved with the work your kiddos are doing, it allows you to either relay information your ABA - Autism Clinical Coordinator, school and your family. Even better, get your teachers and ABA coordinator together - at least at an iep meeting. They can always fill the teacher in on what they see from the data, and the teacher can fill in the ABA coordinator on how the little kiddos are doing in class. You learn how to deal with your kiddos and you learn what they can and can't do, what's new that they need to work on and what needs to be worked on so they don't forget what they've learned.

So much information to process, so many terms to learn, so many processes to - well, process. There is always new terminology, all kinds of abbreviations, and so many different programs to research. The best thing to do is take it one step at a time. Learn like you did in school - one step at a time. With ABA in particular (and those who generally work one on one with someone on the spectrum) instructors will use different "trials" to work with. Each has it's own purpose. The ABA teaching methods, in our case, are Discrete Trial Training and Naturalistic Teaching.

• In discrete trials - there is a beginning, a middle and an end. I was taught to remember "A,B,C" which stands for Antecedent (request - "touch your nose"); Behavior (The child does or doesn't do what is requested); Consequence (Reinforcement - either "good job" or "try again" sometimes the reinforcer is a preferred object to work for, so they either get it or they try again)
• In Naturalistic Teaching - the instructor interacts with the child in a spontaneous and individualized way, so that they interact verbally in a naturally occurring activity in the child's environment

There is a lot more to these teaching methods, but these are the basics. I'm sure I'll write more about it later as it comes to me, as being relevant anyway.    :)

In Our Own Time

Did you ever wonder why certain things happen quickly and others seem to take forever. Personally, I think that it all happens as we can handle it - whatever the circumstance is. For instance, Daniel regressed almost literally overnight. It was like he went to bed this blossoming little boy trying to communicate and learn. Even starting to learn - and awoke a completely different person. Though he had exhibited autistic tendencies before this, it was not as "in your face" as it was after the regression. Virtually everything he had learned up to that point was gone. It was as if we were being shown a movie that gave clues to the ending, so it was more of a "I thought that's what was gonna happen".

Then with Anthony, we saw a completely different beginning. It was like wading into the water at the beach... you put your toe in, then your foot and knee, and before you know it the water is over your head. There were some similarities to Daniel's characteristics, but not enough to connect the dots right away. We figured it was just the "twin thing". You try to accept the initial diagnosis and work with it, but you have this nagging inside that you've seen this before. The difference was, with Daniel - he had a lot of the autistic tendencies from early on... Anthony's seemed to develop slowly. So slowly that some psychologist (who hadn't even met Anthony on anything other than paper) was sure he had Childhood Regressive Disorder (or Heller's Syndrome). This shows some of the progress of symptoms that we saw in Anthony, however, many did not fit.

As Daniel and Anthony have grown into little boys - it's really interesting to see the differences in how autism affects them. One of them is virtually non-verbal, the other has verbal skills, but not a lot of communication skill. Though they are identical twins, they have so many similarities and yet, so many differences.

                                                

                          

Everyone I have met that as a/or child(ren), a family member, or a friend with someone on the spectrum has a different story to tell. Like a snowflake, everyone has a different experience, the same result... each person must basically become their own encyclopedia on autism. When we first learn that our child is on the spectrum, we read more in a few weeks than we've probably read in years. Devouring every item that mentions autism that we can find, trying to decipher which items are true and which are rubbish. Does a special diet really help, does my child(ren) need a special diet, who do I see about it? We learn there is only so much information available on the causes that have been "verified" and many more theories which have not. There are many "treatments", but no cure.

We each find out in our own time what will benefit, where to look, who to talk to... so it goes on and on. It is truly a "learn something new every day" world for those who deal with someone on the spectrum. I think we are guided most by our children, encouraged to move forward with eagerness. Learning from them what they already seem to know... life goes on and you may as well not be distressed because in a moment it changes.

We must realize that what we learn one day may change the next. It doesn't mean what we learn at any point is irrelevant, it simply means that it may be updated. Sometimes information is true and sometimes it is simply a desire someone has for it to be true. Read, read and read some more. Learn as much as you can since you are truly your child's only (unconditional, always putting his/her interest first) advocate. And become an advocate for autism, pass on your knowledge, encourage others to learn about autism. Someone else is ready to learn.

Cherish the Time...

The boys couldn't wait to get back to school, and it was very strange for me, knowing they needed to get back to their routine, but I didn't really expect the urgency that came... 15 minutes before we were to head out the door Monday morning, Anthony was asking over and over for his jacket. Daniel was right beside him - looking on expectantly. I find it amazing how you can all be so ready for school to be back in session, ready to go back to your routines, and yet yearn for that time off together. Stir crazy or not, days seeming to go by so slow, and still when they end it's ... "where did the time go?"  It seems like that happens with most things in this life. Waiting for the baby to roll over, sit up, begin to talk, begin to walk... and in what seems like a second, they are becoming their own person, going to school. As typical kids, we are always waiting for the "next" thing. To go to school, to ride a bike, to be a teenager, be 16, learn to drive, and so on. We are constantly looking forward instead of enjoying or learning from the "now".


All the years spent praying for, trying to have children, the tears, the disappointment month after month, year after year. We could be bitter, and I admit there were times that I was, but I learned to be hopeful in the midst of it. I learned that by allowing dreams to die, you die with them - I refused to let that happen. I found many things that I had to be thankful for in the process.  All of it melted away... because of two beautiful boys, who came into and blessed our lives by filling the space that was empty. It's so amazing how the bad things in life have a way of melting away when they are replaced by the wonderful things that were meant to be from the beginning. For us, it reminds us of how God works in our lives. It eventually teaches us something that we may not have known before, or needed to be reminded of something we had learned before. He doesn't allow us to go through bad, sad, or devastating things for no reason... they help us to learn, grow, develop in new ways and ultimately help someone else. They remind us that all we can do is rely on God to get us through what we need to go through.

                                         

Steve and I have learned now to be content in almost all situations, not because we are special in any way, but because of all we've gone through together. We know that we are blessed regardless of how things may look at the moment, we are learning to cherish every moment with our boys. Because of their special issues, it makes it so we may not get to go out on "dates" anymore (or very rarely), we are learning to make the most of the time we have with our family. We are grateful to have two wonderful boys who, no matter what the day brings, fill our hearts to overflowing.

We would much rather have the challenges today and be able to say we made it through (one way or another), than to not have the chance to go through them at all. I think Garth Brooks expressed it best with a song he did called "The Dance". If you've never heard it, check it out, if you have - please listen again.  We all have only so much time on this earth to have experiences. We can accept them or regret them. They can be either good or bad - try to find the good, or the lesson... so that in the end, you can remember it fondly or at least be able to say, you didn't miss the "dance".

Looking Forward to School...

Well, after 9 days out of school, we finally hit the stir crazy mode, the "I don't think I can't take this anymore"... and it's not just me, the boys are bouncing off the walls dying to get back to school. We've been able to keep fairly busy, but, of course not busy enough for two very energetic 5 year old boys.

                           

The normal routine has essentially been thrown out the window, as far as school hours go. So, trying to get the boys to do some of the things they would do at school has pretty much received a big "ha-ha, don't think so". We have become plain old "mom and dad" and they make sure that we realize we are not their teachers. That doesn't stop us from trying of course. We just have to be more creative now. We will get ready and go for a walk, which will go something like this:

"Ok, get your shoes and socks and bring them to me." After anywhere between one and four times saying this, the boys comply. After helping them put their socks and shoes on, we remember that we must check their diapers. (Still working on the whole potty training thing.) We decide to get jackets - since there is a chill to the air. The whole time we are going through the naming of everything and trying to get the boys to imitate and name the items: "shoes," "socks," "jacket." Then we head out the door.
"Point to the green tree. What color are your shoes? Look, what is that... a car." and so on.

For the last few mornings the boys have actually woken up about 5 minutes before the alarm would go off for school. (Even though the alarm isn't set). They want their school routine, and try to make sure we know it. The hard part is trying to redirect them in another direction, they work hard to resist, but eventually we find a way to do something that keeps their mind off school. You would think it would be easy to keep them busy, but for autistic children, it isn't. You can go for a walk everyday and that's awesome, they love it, but you can only go so many times in one day. You can play outisde for only so long before they get bored of what they are doing. They will only ride in the car and do so many errands. The same as typical kiddos, except, they express their frustration in extreme ways. Once they go off, it can be so hard to reel them back in. When they finally calm down, they will be exhausted, and seem to have no idea why they acted the way they did. They are on to the next thing.

                          

However, with all this said, I have to admit - I wouldn't change a thing about spending time with our boys. Through the good and the bad, like most parents out there, we have more good days than bad. We only remember the bad for a little while before the memory is replaced with a good one. The times when they look at you and smile, and you see the kiddo you know to be locked inside and trying so hard to come out. Every day has it's good and bad, everyone has a challenge they must go through, and no matter how hard we wish our children were "typical kiddos" that will never be. So, we move forward and do the best for them that we can.

Now, time to start planning things to do over the Christmas and New Year's break.

Sensory Overload

It's amazing to look around at the world we live in: nature - so bright and beautiful, all the scents and textures, stores, the people, the things.... sensory input everywhere. Now imagine having so much sensory input that you can't handle it. Everything coming at you at once - like being in a store with a whole wall of tv's - turned on to different stations, and then every few feet a different scented candle is burning, and then two or three different people speaking over the intercom at the same time. That is my very crude and basic understanding of the sensory overload that kiddos on the spectrum go through every so often. Everything becomes disjointed and overwhelming and my understanding is that it is often associated with some type of physical pain. The hardest part for us as parents is that our boys are non-verbal, and getting to the place where we can understand exactly what our boys are trying to let us know can often be quite frustrating for all of us. Which of course, makes it very hard and very time consuming to figure out what they need.

                                                            

Many children on the spectrum use stimming (self-stimulatory behavior) behaviors: flapping of hands or fingers, rocking or spinning around and around. It is believed that stimming behaviors are generally used to help cope with and/or to self-regulate challenging situations. When they become over-stimulated, many kiddos need a different sensory input to comfort them... weighted items or compression, some need both. Luckily, they now have some wonderful products out there to help with sensory needs of children who need them. Especially since some children will not accept any physical contact. We have been very blessed that both of our boys allow physical contact. We can hold their hand or give them a hug or carry them if needed. I can't imagine what other parents go through that cannot use physical contact to comfort their child or give them a loving hug. For those who need them, there are weighted vests to help give constant weight holding their shoulder down. Others use compression vests which are like a nice tight hug with just the right amount of pressure. Out of all the places out there that sell the products for children on the spectrum, we have found that National Autism Resources have some of the best products. (This is our opinion because of the products that we have needed, there are many other companies out there that are perfectly good as well).

http://www.nationalautismresources.com/

There are so many types of stimming behavior that I'm sure we will address another day, because it is an issue we deal with daily in our home. Sometimes more than others.

Thankfulness... Hopefully Always

For most of my adult life I have been a glass half-full type of person, see the bright side of things, look for the light at the end of the tunnel. I have always tried to find the positive in every situation. Now, I am by no means able to do this easily every time things go wrong. However, I can very easily become depressed if I even entertain the negative. So, I have chosen to remind myself that no matter what happens, I have so very much to be thankful for:

It has been a stressful, but wonderful day. Wonderful family time and a great meal to give thanks for and enjoy. The stressful part came in when it was time to head over to Poppy's (grandpa's) house for the festivities. As most parents of small children realize no matter how much you plan, you can rarely get out the door at the time you want to. Especially when it's not for a routine event and you have tried to get moving earlier than normal. This year was no different for us... this time, as we were preparing to get everything done, my husband got a call that meant he would have to go to work for a short period of time. Even though the business was closed, he needed to go help someone who needed truck parts. Now, I admit, at first I was a little put off. We were already behind where we should have been - time wise. Even though he's compensated for these "call outs", all I could think about was: I know I can get the boys ready myself, but I'd like help. Then I realized, someone probably needed his truck to get to his/her Thanksgiving. So, I realized at that point to be thankful that my husband has a job, that we have a roof over our head, that he is able to help someone on this holiday, and that he doesn't have a job where we don't see him very often.

For all those who have children who are on the spectrum, I am thankful for the stories I read that remind me I'm not alone. I am thankful that there are growing networks to help the children and parents to negotiate the life that is the Autism Spectrum. I am thankful for the articles which explain new things they are finding every day, whether it is a new way to diagnose, to treat or just helpful things I may not have found out about yet.

I am so thankful that my boys remind me every day of a new way to see things, to realize that things that are upsetting at a certain point does not mean the end of the world. To be happy in all situations. To get upset, cry or scream, when needed, and then get over it and forget it. I am thankful that my boys don't hold it against me when I mess up and don't know something. To know that no matter what may come, with God, I can handle anything I may need to.

I hope you had a Happy Thanksgiving today, and may you be thankful every day (even when you don't feel like it).

Days Off... Holidays, Family and Summer Vacation

Breaks from the regular routine can really be tough on the autistic kiddos. Most are so use to routine, that they have to learn how to vary from it. Even when trying to teach them that routines may vary, it can be cause for a meltdown or sensory overload. Our boys have gotten so use to their routine that they are literally bouncing off the walls when they don't have school, looking for the sensory input they are getting from school. Also, if they don't have ABA  on a day that there is no school, they are twice as lost. This usually results in us trying to keep them busy enough to give them the sensory inputs they need, which in turn tires them out enough to sleep through the night. (With the exception of going on vacation). Since all of their learning involves each aspect of life, (at some point or other) they are learning to communicate, motor skills, verbal skills (when able), education, and social skills. Our boys (for example) go to kindergarten for 5 hours a day, and then have ABA for 3 hours a day. When they are done, we do or best to practice any skills they have been working on. They work harder than they should have to just to get the basics. It breaks my heart, but at the same time, it is such a blessing to see any progress being made. Every time they look you in the eye or say something that you can actually understand, is cause for celebration.

This is an example of a PECS (Picture Exchange Communication System) daily schedule. Our boys use one at school for their daily routine (different icons of course), they take a pitcure from their schedule and match it to the area where they are suppose to be. At home we have yet to use a schedule, because in the last three years we have developed a pretty strict schedule already. This of course will be changing soon, as their routines change as they grow. We have already decided to follow their classroom schedule in which the match their picture to the schedule, then see what they / we will be doing. Velcro is used on the back of an icon and on a stationary board, or velcro strip, they can remove their icon as they begin the next thing on the list. When you set up the routine (either in the morning, or night before), you give your child(ren) the ability to establish some independence, which in turn of course builds self esteem.

Sometimes you can get your children to understand that they have a holiday or vacation coming up and can prepare them to do something special. Other times (like in our case), you have to wait until the day before to say they "have no school tomorrow" or "we're going to _____ today". Our boys have yet to understand the concept of time, some children with autism wll learn the general idea of time, others never do. Like children asking the age old question "are we there yet?" when going on a trip, the concept of how long until we get somewhere escapes them. Many parents I've talked to, read about, etc have incorporated the use of timers to give their children an idea of time.

                                                                  

With Thanksgiving tomorrow, and the boys off school all week, we have begun our morning with: breakfast, getting dressed, brushing teeth, running errands or taking a walk. For the Monday, Tuesday and Wednesday they have had ABA in the afternoon. This has helped to keep them relatively focused so far. What will be interesting, since they don't usually take afternoon naps, will be trying to keep them completely busy for the next four days. They won't understand going to Poppy's (grandfather's) house for a meal and football on tv. We will take some of their items to play with, familiar food that they eat, and interact with them as much as possible. We are very lucky to have my sister, her husband and their girls (which we have a special and close bond with) to help us keep the boys entertained and busy.

                                

May you and yours have a wonderful Thanksgiving! Be blessed and enjoy. If you have children on the spectrum, remember... breathe, stay calm and engaged, you are not alone! 

Learning and Opening Up

Since most people are slowly hearing more and more about autism, they still aren't aware that there are currently 5 categories on the autistic spectrum, they include:
autistic disorder, rett syndrome, childhood disintegrative disorder, PDD-NOS (pervasive developmental disorder-not otherwise specified), and asperger Syndrome. Autism Speaks is an awesome resource for people with children on the spectrum. Autism Speaks is an awesome resource for people with children on the spectrum. Per the CDC, ASD (Autistic Spectrum Disorders) currently affect 1 in 88 children in the US, estimates are 1 in 54 boys, and 1 in 252 girls. Diagnosis has increased 10-fold in the last 40 years. Autism is now diagnosed more often each year than juvenile diabetes, AIDS or cancer - COMBINED. *

* Comparison based on the prevalence statistics of the Child & Adolescent Health Measurement Initiative

There is a great article that answers many questions about autism:      http://www.autismspeaks.org/what-autism

Some people don't realize that children with autism are a lot smarter than they are given credit for. I have read several stories of people who have severe autism, who are communicating because someone decided to try: ipad's, computers, sign language, PECS, etc. Some people with ASD (Autism Spectrum Disorders) have speech, mental, or motor skill deficits while others excel indifferent areas.

   

Since our boys are identical twins, every one we saw in the psychology and medical field always asked in they both had it. At first it didn't appear so, and everyone was shocked, the reason: in identical twins 96 % of them where one twin has autism, the other will develop too. Though our boys are identical twins, they presented autism in two totally different ways. Daniel was delayed and virtually non-verbal in the beginning, but, because he was a boy and not showing "typical" autistic signs, it wasn't until he had a full regression that he was diagnosed. Still, he was diagnosed relatively quickly after that. Anthony, took a while longer and it also took a regression to have him properly diagnosed. He does not seem to have the severity of symptoms that Daniel does. However, as research shows and parents quickly learn, that like snowflakes, every child on the spectrum has different issues, each case is different.

One thing we have found that helps with our boys, and seems to help with everyone else we know who have or know some on the spectrum: they all seem to have at least one thing that "opens them up". When the boys were 2 - 3 years old it was the zoo, the playground, and as a family trip we went to Disneyland - we thought the zoo and playground opened them up... Nothing like Disneyland does. They are more responsive, more verbal (not that we can always understand what they are saying), more apt to interact. They do better in school and with ABA (at least for a while). It's awesome! I recommend that everyone try anything they can to break through.

Up to Date... Here We Are Now

For anyone who may be following this blog, I apologize for the length of time to update it. It is after all - "sick season" around here, when any virus going around seems to strike every school child. They, of course bring it home. We all got it... But are finally on the mend, so here goes.

On August 1, Anthony started ABA services. We had to have the same assessment, and meeting to determine his status as we had with Daniel almost 2 years before. Later that month he started PALS with Daniel. The best thing for me, and I think for them as well, was that the same teacher who had been our "in home" teacher for Daniel a couple of years before was now the teacher running the PALS program. She already knew what the boys could do when they were 18 months old until they were almost 3.

Picture by Chrissy Kelly (A wonderful photographer who's son is in our class)

The PALS program has brought the boys forward in a great way. They are meeting some of the goals they had not previously reached. It is great because the teacher and the IA's (Instructional Assistants) work to make a program to help the children flourish. There is generally one IA to one student, when the class size allows. The classes are also kept to a minimum size. They use Daily Schedules to guide each student to where they are to be. They have individual programs, group stations, social interaction time, recess with a typical kindergarten class twice a day, story time, and eye contact. They generally do each part of there schedule once or twice a day. Also, the children are taught to interact with each other with the social graces (i.e., learning to say Hi and Bye to each other). The wonderful thing is that our PALS program (and I hope others too) work with the parents and the current ABA instruction the kiddos are receiving.

I hope these programs - ABA and PALS like classes -  if not available everywhere would soon become available. Having the school, ABA program and the families doing the same things is wonderful for the kiddos. It helps them to learn a little bit quicker (sort of), because unlike typical children who can remember simple tasks and say, the alphabet,or numbers after so many times of repeating it, it takes an autistic child so much longer.

We have also found that going certain place with our boys will allow them to "open up". It's different for each child, however, the more stimulation that a child enjoys without "shutting down" seems to allow them to express themselves in certain ways. Not necessarily like a typical child, but we have found that we can see our boys - beyond the autism. I'll write more about that later.

PALS and ABA for Daniel and Anthony

By the end of the boys first year in an SDC (Special Day Class) they seem to be making some progress. Not a lot, but there was something. They got a few weeks off regular school, and began "summer school". Problem... The school they had attended was no longer going to have an sdc class, the summer school was not located in the old school, and they would have to get use to a new teacher - for the summer.

Luckily, it turned out that the school was right up the street, the teacher was really nice and she would be their SDC teacher the following year at their new school. The boys took about a week to settle in, which was nice... we'd had a really hard time with Daniel when he started school. Anthony took to it like a fish takes to water. They loved their teacher and she really made the kiddos feel at home. It turned out that a couple of the kiddos from their first class were in their summer school class, and they would also follow to the new school.

They actually had a great 5 - 6 weeks in the class. Daniel still had ABA in the afternoon, by this time he was having two sessions a day for 2 hours, Monday thru Friday. About 5 weeks later, they started at their new school. It was awesome, even though they had not been there, they knew their new teacher. That helped so much. They still took a little while to get use to the new school, but it was the easiest transition yet.

  

The new teacher was going to school to learn about and specialize in Autism and ADD / adhd, which proved to be an invaluable resource for us as the year progressed.

By the first part of 2012, Daniel had hit a stop sign - he was requiring one on one instruction, and was not learning at the pace he should have been. An emergency IEP was scheduled and we decided to put him in the PALS class for autistic children. The PALS class focused on both group and individual activities. The student having an aid work directly with him/her as needed.

Around this time we watched Anthony slide backwards at an alarming pace. We knew the signs, he had regressed. He still had words, but wouldn't link them, his eye contact was virtually gone, he had been playing along side other students - that too was gone. He preferred to play alone. Also, the boys had stopped almost all interaction with each other. It was heartbreaking on so many levels.

Getting Anthony reassessed proved to be next to impossible with the regional center. We scheduled an appointment with an outside psychologist. One that the regional center had generally accepted his diagnosis. Diagnosis: autism. We sent the information to the regional center... they did not want to accept it. They did, however, set up an appointment with their in house psychologist. Both psychologists had diagnosed autism, both recommended intensive ABA... But... the regional center wasn't willing to update / change his diagnosis.

We had the M-CHAT done for Anthony with the school and they agreed that he should be placed in the PALS program. With all this information, the regional center finally decided to accept his diagnosis, but not without a long struggle. It was August before we could start ABA services and he would have to wait until the next school year before he started the PALS class.. But we were finally getting him the help he needed.

Anthony's Assessments

During the time we had been working with Daniel to make sure he was getting what he needed, we started to notice Anthony seemed to stop advancing as well as he had been. We had been working with him ourselves to get him to learn how to count, say the alphabet, know animals and sounds, colors and shapes. But even when Daniel's teacher would come into our home, she would mention that we needed to keep an eye on Anthony. (We are so grateful she did too). Anthony had been learning words, but we really hadn't noticed that he wasn't "linking words".

We also noticed that Anthony had not been using signs he had learned while he and Daniel would watch Signing Time© DVDs. We also noticed that he wasn't starting to play appropriately with toys. So, we tried to schedule an appointment with our regional center for Anthony. The regional center wouldn't see him until he was assessed by the school (since he was almost three before he presented enough issues to be evaluated). Once he was going to turn three, we were able to set up an appointment with the speech teacher at what would be our school. Since our major issue was that he wasn't "chaining words", we had to start with that. The speech teacher did a basic evaluation and noted that we would have a complete assessment for an iep.

After the assessment was the meeting... We found out that Anthony was behind in much more than his speech. We didn't realize how far behind he was. Though we shouldn't have, we compared where he was to where Daniel was. It was our only example at the time. We were shocked - to say the least. We had noticed a few deficits, but not enough to think he had any major issues. Once we had the assessment and IEP, we were able to enroll him in the same sdc class Daniel was in. We also got the word that the regional center would evaluate him now. They scheduled an appointment at an off site facility. When we got there, the psychologist tried to evaluate him, but he was very uncooperative. After about 20 minutes, several questions and Anthony's non compliance, we were told that he would need to come back another day, to see if he could be coaxed into complying.

About 2 weeks later we got a call from our regional center worker that Anthony had been taken on as a client. We were completely confused, but grateful that they took him on as a client because it would mean that services would be available for him. But then, we were told the reason for him being taken on was because he was mentally delayed. He had an "intellectual disability". We were referred to another psychologist who could help determine "the level" of his delay. After seeing this psychologist, we were informed that he had a "global delay", which basically meant that he was behind in every category. This all basically meant that Anthony, while a client of the center, would not receive any services - they didn't believe that he was capable of learning?!!

Once we had "jumped through the hoops" he began the SDC with Daniel. Initially he did well, in the class and speech. He even seemed to be trying to socialize, or so we thought.

ABA (Applied Behavior Analysis)

While we were going through the process of beginning school with Daniel, we had a home visit / assessment from Holdsambeck Associates - who would turn out to be one of our favorite and best resources. They came in and observed Daniel while he played, watched how he interacted with his twin - Anthony and us. They asked questions, and interacted with Daniel. Soon after we had a meeting and went over all things that had been observed, and how the information gathered would help to establish a beginning point for ABA services. A binder was put together for his programs, information to be gathered in, to show progress.

So, with ABA beginning, we got his own little table to work at, blocks, puzzles and other items he would need. The company would provide his programs. Initially there would be two sessions a day - each 1-1/2 hours each. They would be every day Monday thru Friday after his SDC (which was 3 hours long the first year), and a session on Saturdays. A different BI (Behavior Instructor) would work one on one with Daniel each session. Because he wouldn't stay focused and tended to become increasing agitated, we could not have any men on his team. All of his instructors were women (I think this kept his attention for many reasons, but whatever the reason, it was it worked). He would have several programs to begin with. The very basics were covered at first, putting one item with another, getting him to imitate words, actions and eye contact. From the beginning Daniel was very compliant, they would work for so long then have a few minutes break, with a 10 minute break at the half way point. For the first couple of weeks - whenever an instructor would show up at the door, Daniel would run behind me and start crying, but he would comply with his instructions. It broke my heart, I wanted to cry every time he did. I knew I couldn't do anything. He had to go through this if he was ever to be part of our world and not continue drifting away.

After a while Anthony would try to be included...

We began ABA incorporating ASL (American Sign Language) for anything we would request him to say. We would tell him to "say moon" and sign moon at the same time. Getting him to respond to requests seemed to take so long. He would be compliant and sit down, allow the BI's to make him do things "hand over hand", however, he seemed to be saying... "I'll talk only when I feel like it, and you can't make me." We would also use the sign language for pictures, using it as a visual prompt when he wouldn't comply with just seeing the picture. After a while, we all learned together the limitations of ABA for Daniel. For example, he would completely shut down after 5 o'clock, he wouldn't respond on Saturday's. So, once we had a routine down, we stopped working after 5 and on Saturdays. Then the sessions became 2 hours a piece.

Once the boys turned 3 and we had Daniel on track, we had Anthony assessed with the local school system. It had been a long road getting Anthony what he needed because he seemed to simply be "delayed". Though we knew more was going on, and since his delays didn't show up as much until later, we kept being directed to have him assessed with the school. However, they wouldn't assess him until he was 3, and since he was going to be three, the regional center would not see him until he was assessed by the school.

Daniel's Next Step... IEP and Special Day Class

Shortly after Daniel was "officially" diagnosed with autism, he (we) were set up with Holdsambeck Associates to be assessed for ABA (Applied Behavior Analysis) services. The next step with school, since Daniel was almost 3, was to have an "official" school assessment.  We scheduled the the first "official" IEP (Individualized Education Program) for Daniel with the school, this will be updated annually.

The assessment consisted of the special education teacher, school nurse, school psychologist, speech teacher, the school district's special education coordinator, and of course - us.. They would test him for fine and gross motor skills, general skill level, basic hearing and vision, education level. All these things would be measured against certain criteria that would show what age level he appeared to be at vs. how old he really was. Daniel showed several delays, the gap - which had grown since his first assessment with the regional center. This was very concerning to us, however, we had options on where he could be placed. Our options included an SDC (Special Day Class - Preschool) or a PALS (Playing to Learn and Socialize) program.

Because Daniel had retained what we thought were social skills, we all decided together as a group to place him in the SDC (it was, of course ultimately our decision). The best part was the SDC was a little less structured, and if it worked, he would not have to be in a structured program at school, and then at home as well.

Daniel's Diagnosis

Once "school" began again, Daniel seemed to be doing fairly well... until around his 2nd birthday. ROADBLOCK! He regressed. Or, he seemed to lose his words, colors, shapes, numbers, counting... Gone! He didn't lose milestones, he still walked for instance, but his motors skills didn't seem to be improving as much as they had before. We had noticed little things before, we couldn't quite put our finger on it for sure, but we knew there was more going on than speech and developmental delay. We had suspected autism before now, but every one we talked to said he was too social, too loving... how wrong "stereo types" can be.

He had already been doing the spinning, toe walking, flapping his hands, lining up cars and watching the wheels as he pushed them off the shelf. He constantly looked out of the side of his eyes, or upside down, etc. They just became a lot more intense and a lot more prevalent. Everyone would tell us tell us that we didn't want him labeled, that he was inconsistent in his behavior. This would become a regular description of both of our boys: consistently inconsistent.

Finally, we got to the M-CHAT (Modified Checklist for Autism in Toddlers) and of course he passed/failed (however you may choose to word it) he had "autistic tendencies"... This brought us to the next phase, he would need to be reassessed by the Regional Center again. This time directly by the psychologist. As many of you may have already found out, this is just the beginning.

Once Daniel had his appointment with the psychologist at the Regional Center, he was automatically diagnosed with autism, and also mild mental delay. (They had to do a dual diagnosis, I was told, in order to be able to take him on as a client. Anyone with autism received this diagnosis.) Because of the "mental delay" we were referred to another psychologist to see if we could figure out the depth of the delay. We were grateful, because we'd also wanted a second opinion, to make sure we weren't missing anything. The second psychologist also diagnosed autism.

au•tism [aw-tiz-uhm] (ô'tĭz'əm)
A developmental disorder characterized by severe deficits in social interaction and communication and by abnormal behavior patterns, such as the repetition of specific movements or a tendency to focus on certain objects. Autism is evident in the first years of life. Its cause is unknown.

Now he would qualify for ABA (Applied Behavior Analysis). This would help him learn to redirect his focus and begin to tap into the things he had "lost". It will also help him learn to communicate in a world that won't learn how to communicate with him. We knew all of his knowledge was still there, we just had to help him learn to access it again. This was the beginning of our journey with Daniel and autism.

Learning the Initial System...

Once we had our referral for Daniel with the Regional Center, we would have three appointments there. The first was a "meeting" with a worker to ask detailed questions about what was going on. Typical questions that we had answered a hundred times (or seemed like) and would answer at least as many more. When had he learned to walk, had he rolled over for the first time, when did he crawl, etc. Was he talking? How many words? Etc. Once we finished this "interview" they would get back to us within 60 days.

Finally, after what seemed like forever, we got a call to schedule an assessment. When the day came, we took Daniel to the Regional Center where a group of professionals would figure out what they suspected to be the problem. A nurse, a psychologist, a speech therapist, I believe there were one or two more, but at this point I really can't remember. They would try to get him to mimic words, play with toys that would show fine motor and gross motor skills. They pretty much put him through his paces. All the time asking more questions about his development to date.

A few weeks later, Daniel was "taken on" as a client. His diagnosis at the time was physical and mental delay. He would be referred to a a program in our school district for children with special needs, under three years old. He would go once a week to see a speech therapist who began working with PRT (Pivotal Response Therapy). This is for children with a little speech and is designed to bring more speech out. The second part of this therapy was to bring a "home" teacher in to "play" (work) to develop and assess his progress. She was wonderful, she also allowed Anthony to "play" with Daniel, and included him when he was curious.

Everything seemed to be going well for those first few months. After all he started late that first school year, and would take a break for a few weeks of "summer".

The Crucial 15th Month (For Us)

By November 1st, we were ready to finalize our adoption. Though the "episodes" were becoming more frequent, and the boys had been subjected to alcohol and drugs in the womb... could that be why Daniel was going through what he was? With no answers, we moved forward, would never have changed our course. The boys meant (and mean) everything to us.

We had a wonderful joint ceremony for all the new CPS adoptive parents at that time - it was a wonderful event. Instead of a stuffy courtroom, once a year - this program, "Adoptions in the Park" gave those finalizing adoptions the chance to have a wonderfully personal gathering. Finalizing in front of a judge in an outdoor venue.

At the next well baby/care checkup, the 15-month questionnaire was to be filled out. Especially if there were concerns. CONCERNS?! We'd been asking questions and bringing up concerns for almost a year... Anyway, with my sister's help (since my husband was unable to make the appointment that day), I realized that there was a lot more going on than I even realized. For Daniel the questions:

Is your baby saying at least ## words? Yes No
Is your baby gesturing for items they want? Yes No
Is your baby walking? No

Well there were too many more "wrong" answers, so, now we had the doctor's acknowledgement that there was indeed... Something going on.
???!!! Really? Ya think ???!!!
While Anthony's questionnaire was better, he had started walking at 14 months, it was still showing something a little off.
The great news was that on the 15th month birthday - Daniel began to walk. Also, not too long after, we would have our first appointment with our local Regional Center. A place that helps provide services to children will varying degrees of "issues'. Our local center focuses on Autism, mental and other issues.

The First Nine Months (4)

We knew there was a definite chance for problems due to the birth mom's issues, but everything seemed to be going well. We had the wonderful blessing to be around our nieces early in their lives (up to today). The boys were a little delayed on some of their milestones, but they still were reaching them. We were told initially, "Oh, they're boys. Boys develop slower than girls. Don't worry." They were saying "momma" and "dadda". They were tracking us with their eyes - they had beautiful eye contact for the most part. At least it seemed like they did.

Then by the time the boys were around 9 months we noticed that Daniel started having these "episodes". He would kick, hit, pull hair, scream - you name it. It was like a tantrum, but different. Nothing except holding him tight to me in, essentially a bear hug would calm him. Then, once the "episode" was over, he would be exhausted. Sometimes these would last 2 minutes, other times they could last up to fifteen. It completely took us by surprise, and we had no idea what was going on, and the doctors were no help either.

By the time Daniel was around nine months old, we noticed that his eye contact seemed to slightly diminish. We just figured he was noticing other things more, more curious about other sights. We didn't realize that he wasn't picking up things that Anthony was. Like, Daniel seemed to be taking forever to roll over, to sit up, to pull himself up. He and Anthony had interacted like twins up until this point. But, that even seemed to be happening a little less.

But again, the doctor stated that it was just boys... developing slower.