Here is a video of Colton "singing" his nightly songs with me. He is all of a sudden loving learning new songs and even starting to try and sing notes. It's probably my most favorite thing in the world.
Here is my newest project. Yeah, it's just a free pallet shelf and birds painted on it. I think it's cool, if you disagree...please don't tell me :)
Here is our playroom and Colton's therapy room! I made those bookshelves for $50 in wood. And I like my cheap hoop wall I put together for a few bucks. I wish I had hundreds of dollars to spend in this room, but I only had a $100 budget which went to pillows and art. We are poor students, what can I say. *Yes, that is a swing. YES, we are that cool*
Speech Therapy, Occupational Therapy, and things I do at home.
Speech therapy focuses on speech obviously, but more importantly overall communication. There is a lot that goes into communication. Receptively understanding what people are saying and asking, expressively being able to communicate to others, eye contact, understanding how to comment/answer questions/follow instructions...etc. Although Colton can say 4-5 word sentences, most of his talking a few months ago was just echolalia (just repeating what I say or reciting a line from a book or movie). Speech therapy works not on just speech, but FUNCTIONAL (or useful) speech.
What we've worked on in Speech Therapy
We worked on having Colton make choices between two preferred objects ("do want the cow or the horse?"). This then transitioned into Colton making the choice without the verbal prompt (just holding up the cow or the horse, and having Colton choose). And NOW working with Colton on requesting for things with no prompt at all. This is an important skill because he needs to learn how to ask for things without me asking him first.
Along with the above was teaching Colton how to ask for help. Colton didn't have the instinct to ask for help, so he would simply just stand at a door pulling and pulling on it getting frustrated, and never think to ask "I need help mommy." Colton is a pro at this now.
Looking up at others eyes to acknowledge that THAT is where the object/help comes from. Ex. I wait at the door until Colton looks up at my eyes and says "I need help" before I intervene. Colton is also doing really well at this now.
Following simple one step instructions "put block in" "take puzzle piece out". Colton is now a pro at this too and working on 2 step commands, which he is also quickly picking up on.
"What" questions and "who" questions. Colton used to just repeat back the question when I'd ask him. Now he knows to answer basic "What" and "who" questions. Colton'secholalia has gone way down through working on this.
Occupational therapy focuses on helping kids with their basic everyday skills (or their occupation), which for kids is playing, drawing and other fine motor skills, self care skills and addressing Colton's sensory needs...so a lot of getting Colton's body to feel comfortable in a variety of situations. Colton has major issues with swings/gravitational insecurity, anything flying in the air (especially butterflys), odd textures, all basic grooming (brushing teeth, hair, diaper changes) etc.
OT- Where he was 4 months ago
When we first went in to OT 4 months ago, Colton cried the whole time and we had to go back in a private room where he clung to my lap the whole time. It took us 2 weeks to even get him to LOOK at the main room, and a month to touch the swing. He wouldn't hold a pencil, eat with utencils, or do many fine motor activities.
OT- Where he is now
Colton LOVES Occupational Therapy. He is so happy there, and willing to try everything the therapist wants him to try. He still doesn't like the swing, but tolerates it in small doses. He can draw, and enjoys fine motor activities. He even tried out a tricycle the past few times! It's so excited to see him try new things, where it was impossible before.
Parents make a huge difference in the outcome of early intervention. No pressure right? haha. So, I attend all Colton's therapies, take notes of things to work on, and then actively work on all the tasks. It makes a difference because Colton's Speech Therapist told me that Colton was improving much faster than she anticipated.
I have received training in all the ABA classes, so that everything I do reinforces what he is learning in ABA. There are certain ways to handle situations, and to handle behaviors...and I make sure it is all in line with ABA. Mainly, I am consistent, I follow through on everything I ask him (don't think I'm amazing here. I'm very careful what I ask him to do, since I know WHEN I do I NEED to follow through on it), I am calm and patient, I am positive and always rewarding good behaviors, I don't emotionally give in to tantrums and other negative behaviors.
I take all the classes I can. I've taken the ABA classes that my therapists took. I also took a 5 week Parenting Your Child with Autism class. I will continue to read and attend classes to continually learn the best ways to help Colton.
ME- data keeping
For ABA, I keep some basic data to help the Psychologist and Case Manager. I track and tally negative behaviors, I keep a food log, and other logs.
I manage all the insurance, early intervention, school district, finances, therapist schedules/hours, pay, meetings etc. A team of 8 therapists, and 3 case managers keeps me busy.
And....that's it! If you've made it through all 3 of these parts, you deserve a trophy! Hope you learned a little bit about what we do. I am so grateful to be able to have the support and resources to get Colton the therapy he needs. I realize that this does not happen for all kids, and I feel so fortunate. We are really so blessed. We are a happy family, and I love my little guy.
So, now that you understand basics on why we are doing therapy for Colton, what areas we are trying to help, and what we hope to achieve (see last post)...
...here is an overview of ABA, the main therapy we use for Colton.
(In my final post, I will talk about his other therapies)
ABA (Applied Behavior Analysis)
Colton is involved in Nationwide Children's EIBI (Early Intensive Behavioral Intervention) program. Hours recommended are 25-40 hours a week, and Colton is currently around 25 hours. He has a psychologist, a case manager as a day to day contact, and 3 aides that work daily with him at home, school (in a few months), and in the community.
Applied Behavior Analysis is a scientific approach to understanding behavior and how it is affected by the environment. The science of behavior analysis focuses on principles about how behavior works, or how learning takes place. Through research, behavior analysis has developing techniques for increasing useful behaviors and reducing negative behaviors. It is used to help skills in all areas including basic skills like looking, listening, imitating, as well as complex skills like reading, conversing, and taking the perspective of others.
Basically, it's looking at things from a behavior perspective, and breaking things down to the smallest/lowest level...seeing where Colton is successful...and then building on it.
What does research say about ABA?
Although unfamiliar to a lot of people, ABA is widely recognized as an effective treatment for Autism and endorsed by many state and federal agencies. Studies show that children with Autism show great improvements in their cognitive, communication and adaptive skills. And, (since Colton falls in this category), these studies also show that many children that participate in early intensive ABA for at least 2 years acquired enough skills to participate in regular classrooms with little or no ongoing help.
What does ABA therapy look like for Colton?
We have aides come to our house around 5 hours a day (2 2.5 hour shifts), 6 days a week to work on programs outlined by our case manager and psychologist. I am very involved in the whole process and have received training in all the ABA areas as well. Everything is fun, with a lot of positive reinforcement, breaks, and play time. They do the programs at a little table we have for him, or wherever it makes sense. Each time they bring him over to the table, they do 4-8 trials of a program (ex. trials means saying "do this" 4 to 8 times with putting the block in the bucket, or imitating an action), and having Colton respond each time...either on his own, or having them take his hand and help him do it, if he is not doing it.) There are also reinforcements involved like verbal praise, food, high fives etc.
Here are just a few of the basic programs Colton is working on now. They sound a little dumb and simple, but I assure you it is NOT so simple for Colton and all very important things for all future learning and success.
Imitation-this is basically Colton learning to imitate things that people are doing. Right now we are on a basic level where the aide says "do this" for the prompt and then does some action (bang a drum, put a block in the box, push a car, clap hands, touch nose), and then Colton is supposed to do the action. This basic act of imitating is usually just instinct in kids, but Colton lacks it. Imitating is the basis for all learning, because you look to others to see what they are doing, and then copy them to learn. It also teaches Colton basic compliance, which he had none of.
Matching- Matching is another basic skill of learning. Colton first matched objects, then flash cards, then 2D to 3D, then similar objects, and how he is sorting. Matching leads into sorting, and grouping, and recognizing patterns, and all sorts of learning skills.
Puzzles- Learning problem solving skills. Colton started with just a 3 piece puzzle and is now doing 8 pieces of a 12 piece puzzle on his own.
Fine Motor- Using utencils, finger strength, pencil grasps etc. Colton works on coloring, playing with playdoh, putting coins in a bank (help his grasp), putting clothespins on a lid (strength and grasp)
Toy Play- Playing properly and functionally with toys. Colton tends to narrow his interests, become ritualistc, and rigid with his toy play. As in, if left up to him...he would play with the SAME toy in the SAME way every time and not vary from it. You can't be successful playing WITH other kids, until you know how to properly play with toys on your own.
Receptive Commands- Following simple commands like "clap hands" or "touch table". Colton used to ignore all commands, and only act on them if he wanted to. He needs to be able to follow commands from others, and in a variety of circumstances.
"Hi" "Bye" program- Learning to say Hi when people come in a room, and Bye when they leave. That involves looking up at them, saying Hi, and sometimes saying their name.
"Come here" program- Learning to come in the general area of the person asking you to "Come here."
Where Colton Was
When we first started ABA, Colton cried the second he would see any therapist, minimally interact, and bury his head in the ground every time anyone asked him to do anything. He never would respond to what I'd tell or ask him, and only performed tasks on his own terms. I once tried for 30 mins to get him to put in one puzzle piece at an evaluation while he screamed the entire time not complying. He did not eat with utencils, look to me for reactions, or come to me to involve me in activities and throws major tantrums multiple times a day... and on and on...
Where he is just 3-4 months later
Colton now loves all his therapists. He goes downstairs happily with them, pushes me out and says "bye mommy" while closing the door. He interacts, plays games, laughs, and talks to the therapists. He comes over to the table and participates in all programs. He quickly learns programs, because he is paying attention and being reinforced positively. He engages with me so much more, looks to me for my reactions, imitates my facial expressions, handles demands being placed on him, and only throws tantrums about once every week.
Night and day difference. He is improving so much. I work constantly, but it's all worth it...because his life is improving and he is happy. And that is what it is all about. I love ABA.
Ugh, wow. I'm sure no one read all that. :) I'M tired just re-reading it!
(I am not an Autism expert, and do not pretend to be. I AM, however, becoming an expert on Colton's Autism and his therapy. Every child on the Autism spectrum is different and every parent makes the decisions that are best for their child. And I am the last person to judge.)
In an effort to help people better understand Colton's therapy and my life...here is a basic Q&A I put together of Colton's Autism therapy. Tomorrow I will post details on the actual therapy.
Q. Colton has Autism, but what does he exactly need therapy for?
A. EVERYTHING. Autism affects all aspects of Colton. He has deficits and issues including: communication (and speech), social-adaptive behavior, self help skills, gross motor, fine motor, play skills, repetitive behaviors, sensory issues...etc.
Q. How do you possibly target all those areas?
A. ...and this is why we have 30 hrs a week of therapy (primarily ABA-Applied Behavioral Analysis).
Q. I always thought there is no chance for a kid with Autism, why do you try so hard?
A. If there is one thing I've learned in the past 5 months, it's that Autism is NOT the end. Hard hard work and early intervention make a HUGE difference.
Q. Sounds like you are just therapy-ing the living day lights out of him. Why don't you accept him for who he is?
A. I ASSURE you, there is not a mom out there who loves, and is more accepting and encouraging of their child. Therapy is my way I can help Colton reach his potential, not take away who he is.
Q. What is your ultimate goal with Colton?
A. Right now, my goal is to have Colton be able to attend a normal school one day, and eventually without the help of an in-class aide. I want him to experience life, not be sheltered from it. I want him to be capable of having meaningful relationships with peers and others. And one day...I'm hoping he'll graduate from high school, go to college, and maybe even get married...but that's looking really far ahead :)
This post is getting long, so tomorrow I will post about the basics of Colton's therapy. I know...you are so excited you can hardly stand it. haha.
So, I wanted to introduce you to a little thing I love called a "social story". I make these little "social story" books for Colton to help him with transitions, events, or different experiences. I've made books for changing diapers, getting into a car, going to bed, going to a wedding...and NOW....FOR HALLOWEEN!
I always feel a little silly making these. But, the bottom line they help Colton know what to expect.
And I now present to you...Colton's Halloween book. (4 pages per sheet) My favorite page is "My friends dress up as animals, princesses, and ghosts. Some even wear masks or funny hats. But it’s okay, because costumes are fun and just pretend."haha. And YES, that is Colton's face I put on a random kids Man in the Yellow Hat costume. haha. Awesome.
I've been feeling very grateful recently, a new kind of "grateful".
I used to say:
"I'm so blessed, I'm having a healthy pregnancy" (when pregnant)
"I'm so grateful, I have a beautiful healthy baby" (when I had Colton)
"I'm so blessed with my perfect little family. As long as we are all healthy and happy, that's all that matters. Everything will be fine as long as Mike and Colton are fine." (over the past few years)
(Everyone at times goes through hard things. Really hard things.)
Well, what about when you DON'T have a healthy baby, or what about when something bad DOES happen? What happens when your family ISN'T the perfect family you dreamed up?...
...when your child ISN'T okay...
How then...can you still be grateful?
I don't exactly have the answer... but I am learning that feeling grateful is not related to an ABSENCE of trials. I know that I am more grateful right now than I ever have been in my life. I'm grateful for Colton. I'm grateful he is mine. If you lined up a million kids, I STILL would pick him. Autism isn't ideal (and I'm still not quite "grateful" for it yet. I am human afterall.), but I don't even care because Colton is seriously awesome and the coolest kid I know. I'm grateful for every step of progress he makes. I'm grateful for Mike, and his ability to relate and care for Colton. I'm grateful for our therapists. I'm grateful we are able to get him the therapy he needs. I am grateful for a supportive extended family. And most importantly, I'm grateful for the peace I feel. The peace which I know only the Savior can bring.
To me, my little family is perfect. And I feel so blessed.
(See, I told you he was awesome. Pumpkin stickers, PJ pants, football, strolling around the hood. )
Life is one big balancing act. As a mother, it gets very tricky keeping all of life's demands in balance. We have children, husband, church, home, work, and ourselves we need to worry about.
Right now, I am way outa balance. In my mind, I feel like I have to give 200 percent of my energy to the "children" category, which leaves nothing for the other categories. While working hard for your kids IS a good thing, neglecting your OWN needs is not good.
It's funny how minimizing our own needs doesn't actually make us more productive in the other areas...for me, it actually does the opposite. The more time I spend on myself, the better and more effective I am in the other areas. Likewise, when I DON'T take time out for myself, the rest of the areas suffer.
So, with that...here are a few things I'm doing to keep myself balanced (aka projects on a student budget):
Project #1: Hoop Wall (completed) $15. Colton's therapy room, needed some wall art, and this was a cheap fun way to do it. That, and we have red couches so it is hard to coordinate with those.
Project #2: Pillows (completed) $15. I also have some yellow ones I made too for an additional $20.
Project #3: New dining set (not started yet). Since the movers lost some of our stuff, we only have 3 kitchen chairs. Living on a student budget, I am going to make this super easy table for $50 and buy these ikea chairs. This table is great because I can make it whatever size I want, it's solid wood, and will take me just a couple hours to make. Total new dining set=less than $300.
Project #4: Curtain (not started) FREE. I also really want to make a ruffle valance (like this, but a valance) out of a sheet for downstairs, but I'm worried my window may be too wide to make the ruffles...hmmm....
And...just because...here is a picture of Colton. Sweet sweet face.
Any other project ideas? Mike starts school in a week, and so I'm going to need a lot more projects to work on in the evenings!
Replace fear with faith. Easier said than done. I feel like there is a constant fear vs faith war going on in my head. Sometimes when I wake up in the morning I just feel all beat up and emotionally drained from the battle that goes on in my head.
For the record, I always used to pride myself in being an optimistic person. I pretty much always felt like things will work out, and that whatever happens I can still be happy. I felt like I was flexible, resilient and willing to take on tough challenges. I was what I could call...an emotionally very stable person.
Then life got hard. Then it got harder. And then it got even harder. When Colton was first diagnosed with Autism a couple months ago I would ask, "will I ever be happy again?" I wasn't sure.
So, am I happy now? YES. Yes, I am.
So, does the Autism still hurt? YES. Yes, it hurts bad. Every day. Every day I'm faced with this reality like a freight truck coming right at me.
About 1 out of every 5 days, my fear gets the best of me. And here is what it says:
1. You aren't doing enough, if you were doing more...he would improve more
2. You aren't doing the right things, you should be saying it THIS way to him, or getting him to make eye contact by doing THIS.
3. Your therapies aren't going to work
4. Colton is never going to be able to make friends
5. Kids are going to pick on Colton at school
6. Colton won't be able to have any meaningful relationships outside of me and Mike
7. I'm going to run out of energy and strength and not be able to give Colton all he needs.
8. Maybe he won't ever go to college, or get married, or live on his own.
9. How am I supposed to have more kids? What if they, too, have Autism? What if Colton hates me having a baby?
THEN, my faith kicks in...and I actually HEAR these words in my head. Repeating over and over.
1. Colton is going to be fine. You are going to be fine. Your family is going to be fine.
2. Colton is going to talk again (which already is happening)
3. Your therapies are going to make a huge difference
4. Colton has SO so many great things going for him...see his sense of humor, his smile, his talking, his eyes, he's taking in everything, he's a smart boy.
5. Colton has had friends before, he will be able to make friends again one day.
6. Colton's possibilities are limitless. Keep pushing, keeping pushing.
7. Yes, it will take 100 times more effort, but the effort will get him there. And you will be SO proud of every accomplishment along the way.
8. We can have a happy family.
Yesterday...fear won...today it's a tie...tomorrow...I'm sure I'll be back to faith for another 5 days. And on and on I will go up up up down and then back up again.
But, I WILL get back up. and I WILL have faith. I have to.
(PS don't feel like you have to comment...I'm really not fishing for compliments...more just informing people of the emotions I'm sorting through. I recognize these emotions are not unique to me and that others battle many challenges too. I admire so many people for the things they've gone through and am more aware now, more than ever, of the strength I see in those around me.)
Colton has been cracking me up lately with the things he's picking up. Recently, he has been using lines from his Curious George show to talk to me.
Here are a few favorites:
While running down our hallway, "Geeeeoooooorrrggge! Hey!"
While pulling a wagon,"Here goes nuttin'!"
While holding a train track like a camera, "say cheese!...HEY!"
When walking into a messy doctor's office, "What happened in here? What a mess."
While at the zoo, "I see monkey. George monkey. A doctor monkey!"
While watching me get ready, "What are you doing in there?"
While playing outside, "Don't be too curious! Be careful!"
PS don't you love Colton's sandal tan?
(Note: for those of you wondering "wait, Colton is talking...does he still have Autism?" Here is my answer: Yes he is talking more, and yes he has Autism. His speech has gradually been coming back, but it's noticeable now that he is simply memorizing things and not speaking conversationally (autism problem, it's called echolalia). He still DEFINITELY has Autism, and is verbal...but will need to learn how to communicate better still. Speech is only a part of communication and although he can put together words in a sentence, he lacks the other aspects of communication like directing language at someone, involving others, uniquely coming up with sentences, eye contact etc. It isn't so noticeable when they are 2, but as they get closer to 3 then 4 years old etc. the gap becomes pretty noticeable. It's noticeable now if you watch him in nursery or with other kids his age. But BOY are we CRAZY grateful his language has come back. EVERY word he speaks I love and appreciate! :)
We are settling into Columbus and some of our new routines. Columbus is beautiful... we regularly take walks, visit the waterfall right by our house, or go on river walks. We enjoy playgroups, eating at Chipotle and Einstein Bagels, and looking for squirrels. From the outside looking in, things might just look totally normal...Mike and Colton running around playing a game, or me and Colton reading books together.
But, if you look closer...you see a calendar filled with appointments, therapists, interviews and planning meetings. You'd see paperwork, medical bills, and time sheets for managing employees. You'd find business cards, and sticky notes, and piles of papers waiting to be filed.
Colton's schedule has gone from nothing all week, to 5 hours a day of appointments and it's only going to get more. You'd see a mom who works tirelessly every moment thinking of ways to help her son. Every car ride is filled with me trying to get Colton to talk, to use his words, or to notice his surroundings. Every look out the window is filled with me asking questions to get his mind thinking conversationally, coming up with stories to help him think in the abstract, or repeating phrases over and over again to help him gain the language. I have to follow through on everything I ask him to do, even when it makes him mad. I need to remain completely calm in all tantrum situations. It's like I'm in a game of chess, contstantly planning what I should say, how I should respond, or how I should act...because everything I do helps reinforce what he is learning in therapy... or unravels his therapy.
But, I'm SO happy to be making progress. And, I'm so proud of Colton. He is being so brave handling all these new people, new situations, and new demands. I'm excited for what the future will bring for him. He has a lot of potential. It is a lot of work...but I know where it can get us. And we WILL get there.
But, BOY, do I love this kid. Just look at this face...
Well, we made it to Ohio a week and a half ago, have moved into our little house, and are waiting on our truck to arrive with all our belongings. Hopefully it will come in 2 weeks (but it's already a week late, so WHO knows).
Columbus is gorgeous! I love it. We have a river a mile from our house, a zoo, a neighborhood with sidewalks, a playground in the backyard...it's great! Our house is super cute, thanks to my parents to came up and did all sorts of work on it. Colton loves Columbus too. He likes going for walks outside, picking bark off trees, and swinging on his swing. So, he is doing well all things considered.
In the week and a half we've been here, we've already had 5 interviews/ meetings for Colton's therapies, 2 Occupational Therapy appointments, and another 3 meetings in the next week to get him rolling in the other therapies.
As for me?...well, I'm just trying learn how exactly to be me and handle all our changes. Do I tell people, or do I wait? Do I act positive and upbeat so people don't feel bad for me, or do I really let them know what I'm going through so they can support me? Do I want to make my life "Autism" or do I want to show a balance so I can have friends? No one wants to be friends with someone who is always whining and only talks about their own kids problems. How do I find that balance of being caring, giving, friendly, while helping others know the REAL me of what I'm struggling with. How do I relate to others? Being a mom gives you an automatic ability to relate to other mothers...but for me, I have different struggles/battles/ worries/ fears...it alienates me naturally and makes me feel lonely. How do I not feel lonely? I feel myself just wanting to withdrawl from everything...facebook...blogging...all of it because all I can think to post about is Colton, and don't want to push people away. Do I just join Autism support groups? How will Colton do with all the therapy? How much will he cry in protest? How much of that can I handle? How am I going to do implementing his therapies 100% of the time? Will I have the strength? How much is he going to improve? Will he start talking again? Well he ever relate to anyone other than close family? Will he ever have friends again? So many questions...
Overall, I'm optimistic about the future. I feel Columbus is the place for us for progress for Mike, me and Colton. But, in being honest, it's really hard trying to figure it all out and figure out the new "me" because Colton does change that now. I live IN this world, but I also have my own little Autism world which sets be apart and makes me have to see the world differently in order to understand Colton.
Okay, enough rambling for now!
(I kinda look prego from this angle, I assure you I am not)