Dinosaurs ROAR!

Thanks to Dino Dan on Nick Jr., JD has a new love - DINOSAURS! I must say, it's a nice substitute for Thomas... not that playing trains for two solid years wasn't fun! Here are some pics of his new favorite toys. He's doing wonderful and everyday I'm so thankful to all of the people that have helped us get to this point. I know the future is bright and no matter what it brings we are in it together!

Update on Diagnosis

It's been a very busy month in autism land at the Graham household. JD started the month with a 6-month update with his pediatric developmental specialist. Her name is Dr. Cely and she is wonderful! The great thing about the meeting was that she felt that JD was making HUGE strides in his language and motor skills, so his CARS assesment number went down 10 points, moving him into the PDD range! We are really excited, because it feels like the last six months of non-stop therapy has really helped him. The biggest leap was in his speech. When we started JD had 5 words, all which focused on Thomas the Tank Engine. Now he's over 100 words and he can actually communicate his needs (for the most part!)

The funny part of the appointment was that Dr. Cely told us that she felt that JD would eventually be re-diagnosed with Aspergers when he was in elementary school. I was totally shocked. I didn't think he was anything like an Aspie. However, she pointed out a few things to me that I never noticed. First was that his biggest problems are social - he gets obsessed with certain items (like his trains) and does not want to do anything else. He's not really sure how to play "appropriately" with others, but instead of shying away, he's too in their face. It's like he doesn't have the same personal space issues that most people are born with. He falls apart when things don't work the way he wants them to, which I guess is part of this perfectionism of Aspies. The one thing that I thought was funny was that she asked me if he ever lines up things at home and I said no. I guess I just never noticed it before (probably because we're at therapy pretty much all day so he never has a chance to do that!) but today he has the day off and look what he made... a perfectly lined up arrangement of his trains. I guess I was wrong!

The funny thing is that I left the appointment happy. Most people would be torn apart learning that their child might has Aspergers, however it was a relief to me. I just hope that he continues making progress and is still a happy, healthy little guy :)

Loved This!...

I was wondering around the internet tonight looking up stuff on autism and PDD and I found a page with this info on it. I thought it was a great summary of what life is like with a high-functioning kid on the spectrum!

Although it is similar to Autism, a diagnosis of PDD or Asperger's means that a child functions on a higher level, both cognitively and socially, than what you might expect (particularly if you've seen the movie, Rain Man). Common challenges children with mild Autism/PDD/Asperger's may face in the classroom:

Associative Memory - While many people think more logically or linearly; those with Autism, Asperger's, and PDD tend to be visual thinkers. Instead of thinking in language, they tend to "think in pictures." We have found great value in giving our child pictures to refer to when he's having difficulty with a concept, particularly those that are more abstract.

Auditory Processing - Children with Autism, Asperger's, and PDD typically have problems processing things they hear, particularly if it's a large quantity of information. Sometimes, the lack of speech comprehension is interpreted by others as an unwillingness to obey. And sometimes, it could be be just that! However, many times you may find that the child will comply with instructions if they are shortened, written down, or given with visual cues and pictures.

Fixations - Many children with Autism, Asperger's, and PDD get fixated on one subject, such as cars, trains, calendars, or maps. They may refuse to read books unless they're about their subject of interest. The best way to deal with this is to use their interest as motivation for school work and other things they need to do. Teachers often have success by alternating a book on their favorite subject with another book they want the child to read. The child gets to read the one they want as a reward for reading the one they'd rather not.

Food Issues - It is sometimes difficult to get autistic children to eat, and sensory issues play a big role in this. What we have found, is that changing the shape, color, texture, or size of the food or the plate it is served on can be quite helpful.

Extremely Literal - This can often catch you off guard. One child thought that the alarm for the fire drill at school was an actual drill. He thought the drilling was what caused the noise for the alarm.

Handwriting - Delays in fine motor skills and problems with motor control in their hands can make writing more difficult. Children with fine motor delays usually receive occupational therapy to help address this; but in the meantime, the child may need to write with a marker instead of a pencil to make up for the lack of force exerted by their hands. On another note, some children may write only with upper case letters. This is probably the result of their resistance to change, but it could also be that the fine motor delays make it difficult to form the lower-case letters.

Meltdowns - Sometimes, despite your best efforts, the child may have a "meltdown" because he/she just cannot handle something. The best thing to do is give him/her a safe place to calm down and regroup. This place should be chosen ahead of time, and it should be as quiet and as soothing/non-stimulating as possible.

Resistance to Change - Maybe a better term would be, "difficulty dealing with change or anything unexpected." Something simple like calling to speak to grandma on the phone can be a challenge if grandpa answers instead. Sameness and predictability are essential in the early days and weeks in a new classroom, particularly for younger children. Later, it is always best to warn about any changes ahead of time. They may feel the need to ask a lot of questions to help themselves understand the change and how it will affect them.

Sensory Processing - Sights and sounds that are tolerated by "typical" children may cause pain, confusion, and/or fear in children with Autism, Asperger's and PDD. The best way to describe this is to imagine waking up in the middle of the night, thinking you heard a suspicious noise. All of your senses are on heightened alert; and the next sight, sound, or touch could send you through the roof. This is how many children with Autism and PDD feel when they enter a room for the first time, encounter a new situation, or experience stress.

Theory of Mind - Children with Autism, Asperger's, and PDD have difficulty comprehending that others don't know something. It is quite common, especially for those with savant abilities (special gifting), to become upset when asking a question of a person to which the person does not know the answer. Theory of mind refers to the notion that many autistic children do not understand that other people have their own plans, thoughts, and points of view. They may also have difficulty understanding the beliefs, attitudes, and emotions of others.

My love for Brown Bear...

Six months ago seems like an eternity away at this point. JD has come so far and sometimes it's easy to forget where we were in March. One thing that always makes me smile is sitting and reading Brown Bear Brown Bear at night with JD. I remember when he was diagnosed that he didn't know ANY of the animals. He couldn't say any of the names, he didn't point at them, nothing. Jason would sit each night and read him the book and go out of his way to make these great animal sounds for him, which JD loved. Eventually JD could imitate the sounds each animal made, but still couldn't say the actual name of the animal. We were stuck in this mode for months. Then eventually it's like the light turned on. We sit at night and go through the book and he can name every single one! At the last page, I'll ask him to point out each one and he will! He knows all the sounds they make and the colors. It's amazing and it humbles me to know what in six months we've done more than I could have imagined with him! So for this I say that I officially love Brown Bear! :)

My Little Gators!

It's the best time of year... college football season! And just to make things even better I got a picture of all the kids in their Gator gear. This is the FIRST picture I've taken with of all three of them voluntarily sitting together looking at the camera!! HOORAY!!! :)

The month of August was a really great month for JD. He finished summer classes and had a week off (which I must say was a little rough) and then started back for fall. His preschool is amazing! He has a new teacher for the fall, her name is Miss April, and she's so wonderful. Each month I'm amazed at how much he learns and how easier his life gets.

A few big accomplishments to note...

1. He learned how to say "help" on his own!

2. He learned how to say and sign the words "please" and "more"

3. He's arranging items by color now at school!

4. And his vocabulary just keeps increasing because he will repeat words after saying them once, where it used to take weeks before he would repeat!

5. He'll give Ashley a HUG!

I think my favorite part of the day is when we go into his room right before bed time and work on his speech. He LOVES flashcards and we go through probably 50 a night. He loves to read and will now sit and listen - in the beginning he had no attention span for that.

It's just amazing at how far we've come in 6 months. I'm so proud of him and how hard he works for things that come so naturally for other kids his age. He's such a little hero to me!

July Accomplishments!

This month was a good one. JD finished summer camp at All Therapy Connection and he starts back in August for the school session. I'm really excited because he's made so many strides since we started there. I can't say that everyday I'm so up beat, lately I think I've been finding myself down when I sit down and think that this journey will be for the rest of our lives. I know we're actually very lucky to have what we do with JD - he's an amazing boy with a huge personality and more love than I know what to do with. But when moments come when you see another person with a child that's probably a year younger than yours and they are so far past them in development that it makes your heart sink a little. I always wonder why I didn't notice his issues sooner. But I can't beat myself up - really, what difference would it have made? It's not like it would change the fact that he has autism. I guess that's why I try to stay positive, it's easier to get through the day when you think of the good rather than the bad.

JD has come so far in so many ways, but there are a few things that stand out to me. One of those things is listening to a request and completing it. I remember back in March when he was diagnosed I didn't think we'd there, at least not this quickly. At that time if you said, "JD go get your cup" he had no idea that: 1. you were even talking to him, 2: what the heck a cup was and 3. that you wanted him to do something with the cup. I'm always so thrilled when he responds to a request now!

Another funny thing that stands out in my mind are three words: NO, MINE and DONE. Most parents hate the day their children begin saying these words, however this month JD finally started using these words to express his feelings without acting out in violence! I personally love these words now and I can't tell you how happy I am to hear the word done rather than pick food that's been thrown off the floor!

All in all it's been a good month. I'm really looking forward to fall though, this summer heat is killing me. I can't wait to meet the kids in JD's class - I'm really going to miss his friends Matthew and Mason who were his buddies during summer. They are off to "big kid" school which is pre-K! I wish them all the best of luck!

Just Thankful...

Tonight I read a posting on the Autism Speaks blog called "Be Still"
http://blog.autismspeaks.org/2010/07/29/itow-graves/ and it really touched my heart. In so many ways I relate to what the mother of this posting is going through but it also made me really thankful for what we have and how far we've come in the last 4 months with therapy.

Before JD was diagnosed his normal days mostly included stimming with his trains on a small end table, watching tv and having very large tantrums during meals, getting dressed, changing his diapers, playing with his sister. He really never approached me very often, would only respond to his name about 50% of the time and never said anything other than choo-choo and chugga chugga.

Fast forward from March into mid-July... JD is a different child. It's not that we don't have difficult moments with him (geez, three days ago he just cracked our flat screen tv by hurling his sippy cup at it), but in so many ways he's changed.

JD now has over 60 (probably more!) words. He is pointing, gesturing, dancing, imitating, laughing, singing, smiling, interacting, listening, communicating... it brings tears to my eyes just thinking about it. Today him and I had the best time dancing around the family room to the song "I've gotta feeling" by the Black Eyed Peas. We spend hours hiding in our "fort" aka the walk in closet and every night before bed we give kisses to pictures of everyone in our family.

Things that I never appreciated with Ashley are now huge accomplishments with JD. Today in OT he learned how to crawl up a slide... something Ashley could do right after she started walking. JD was terrified and it has taken him over two months to finally get the courage up to do it. But today he did and he was ecstatic! The pride I see in him when he says, "I did it!" in his hardly understandable language. My heart explodes with happiness.

I guess that's why I'm thankful. I feel like the past few months have taught me to enjoy every minute and every accomplishment. To not take things for granted that I did before. To really appreciate the people that have helped him and us - our family, friends, his therapists, teachers, the other parents with children who have autism. Because this is something we couldn't have done alone.

This month JD gave me a kiss for the first time... a totally unforced kiss on the lips. I think that moment changed my life and now every time he does it I remember how far we've come. :)

June Accomplishments!

WOW - here we are, already finished with the month of June! I can't believe how fast the weeks are flying by! Well it's been a GREAT month, probably one of the best of my life. JD is doing wonderful and has been really progressing in therapy. This is his 4th week in his new preschool, PowerMeKids, and his 5th week in speech and OT. It's almost like having a new child. OT has really made a huge difference in his life. He seems happier, less frustrated, more social, and more talkative. It's not like sentences are just flowing out yet or anything, but he's learning new words everyday.

The best part of the entire month is that for the first time JD kissed me! I've always kissed him, usually it lands on his forehead. But one night right before bed, I said "JD can I have a kiss?" and he came up and kissed me right on my lips! I was so happy my eyes teared up. It was one of the best experiences in my life. There's nothing better :)

He also went to see his first movie this month - Toy Story 3. Thanks to AMC movies, they do a "sensory friendly" showing of kids movies where they are aimed towards kids with autism. The lights aren't turned off and the noise is turned down and they can run around and make noise. It was actually nice to be in a group setting with people who totally don't care if my child is loud! Everyone was in the same boat!

All in all this month was wonderful. I'm hoping each one gets better and better. I'm really thankful because I've met two new friends - Margo and Andrea - their boys go to JD's school and we've all become friends. I'll be sad this August because their boys are off to pre-K, they're 2 years older than JD. But it's been so nice to have some friends who understand our everyday struggles!

Lovin' It!

Last week was a big one... it was JD's first week at his new preschool that focuses on sensory integration. So far I love it! He seems to be doing really well, much better than I thought he would! He's also doing great in OT and Speech, which are through the same therapy center. I think the schedule and the routine have made things easier. This week he's done great - he's not crying or having a meltdown when we walk in and he's waiting to go into the classroom instead of trying to break down the door. Today was great because he really enjoyed his OT session. One thing I'm really interested in is called Therapeutic Listening. Right now JD has to listen to a therapeutic CD for 15 minutes on headphones. Eventually (once he's got the hang of it) he'll listen to 30 minutes, twice a day. It's really interesting! I read more about it online and I think it's a great way to help him organize his world. I can't explain just how happy I am that we're on the right track now! :)

Let the Race Begin!!!

One word to describe my feelings?.... excitement!

I've been waiting for this weeek for a while now. JD officially started his therapy program on Monday and so far it's been going as good as expected, but we're all worn out! I feel like I have a full time job again and it's only the second day!

Monday/Wednesday/Friday mornings he'll be in his preschool program called PowerMeKids. It's a school based in sensory integration therapy. Yesterday was his first day and I think it went pretty well. They said he enjoyed the "Giggle Yogalates" and the obstacle course, but had a hard time with the more structured tasks. He's two - so it's hard to determine if that's more just part of his age or part of the autism. I think it's partially both.

Tuesday/Thurs mornings he's in speech and occupational therapy. And then every afternoon after his nap he's in therapy. Monday he has another speech session, Tuesday and Thursday is behavior and Wednesday is Music Therapy.

I'm just so happy it's finally here and I feel like we're making progress to getting him help! Thanks to everyone who is supporting our family through this big change in our lives!

May Accomplishments

May was a LONG month, but we got A LOT accomplished. Maybe not a lot therapy-wise, but a lot in planning for therapy to start. Starting on June 7th (next Monday) JD will begin his therapy program. He'll be getting 20 hours a week of various therapies: sensory integration therapy, occupational therapy, speech therapy, behavior therapy and music therapy. It's going to change our world completely! It feels like every minute of every day is scheduled, but for a Virgo like me I guess that's not all that bad!

JD also had some great accomplishments this month... he started saying a few more words: beep, beep! ash-ee (for ashley), nih-nih (for night-night), here you go, sip-ee (for sippy cup), biscuit, and probably a few more that I can't remember right now. Of course the funny thing is that he never says these words around his speech therapist so I'm sure she thinks I'm crazy when I tell her that he's saying all these words!

I'm REALLY excited for therapy to start next week! I feel like it's like a race to start and I'm sitting at the start line just fidgeting waiting to run!

Top 20 Reasons Why Moms of Special Needs Kids ROCK!

This month has been especially tough for the Graham Fam... I've been sick for about 2 solid weeks and I'm finally feeling better. This week I get my wisdom teeth out and hopefully by the 1st of June I'll be a new lady!

I found this post on the Autism Speaks FB page and I thought it was too cute!

The Top 20 Reasons Why Moms of Special Needs Kids ROCK!

1) Because we never thought that "doing it all" would mean doing this much. But we do do it all -- and then some.

2) Because we've discovered patience we never knew we had.

3) Because we are willing to do something 10 times, 100 times or 1,000 times if that's what it takes for our kids to learn something new.

4) Because we have heard doctors tell us the worst, and we've refused to believe them. Take THAT, naysaying doctors of the world!

5) Because we have bad days and breakdowns and bawl-fests, and then we pick ourselves up and keep right on going.

6) Because we gracefully handle the stares, the comments, the rude remarks. (Well, mostly gracefully.)

7) Because we manage to get ourselves together and get out the door looking pretty damn good. Heck, we even make sweatpants look good!

8) Because we are strong. Man, are we strong. Who knew we could be this strong?

9) Because we aren't just moms, wives, cooks, cleaners, chauffeurs and women who work. We are moms, wives, cooks, cleaners, chauffeurs, women who work, physical therapists, speech therapists, occupational therapists, teachers, researchers, nurses, coaches and cheerleaders. Whew!

10) Because we work overtime every single day.

11) Because we also worry overtime, but we work it through. Or we eat chocolate or Pirate's Booty or gourmet cheese (which aren't reimbursable by insurance as mental-health necessities, but should be).

12) Because we are more selfless than other moms. Our kids need us more.

13) Because we give our kids with special needs endless love, and then we still have so much love left for our other kids, our husbands, our families. And our hairstylists, of course.

14) Because we inspire one another in this crazy blogosphere every single day.

15) Because we understand our kids better than anyone else -- even if they can't talk; even if they can't gesture; even if they can't look us in the eye. We know. We just know.

16) Because we never stop pushing for our kids.

17) Because we never stop hoping for them, either.

18) Because just when it seems like things are going OK, they're suddenly not OK, but we deal. Somehow, we always deal -- even when it seems like our heads or hearts might explode.

19) Because when we look at our kids, we just see great kids -- not kids with cerebral palsy/autism/Down syndrome/developmental delays/whatever.

20) Because ... well, you tell me.

Maybe it's just Sensory Integration... I hope

Here I am again, I can't sleep and my mind is wandering all over. About two weeks ago I ran across a great website called http://www.autisticlike.com/. It's a story of a family whose son was diagnosed around the age of two with autism. They started ABA therapy and a few months later had a gut feeling that it was something else, not as much autism but something they couldn't describe. This is my life... I've had two medical doctors give JD a diagnosis of autism, however I'm still not quite sure. Some days I totally see it, but other days I think things just don't quite "fit" into an autism diagnosis. Well their story ends with finding out that their son has Sensory Integration Disorder. They created a DVD about their story which is really great and I recommend highly.

Sensory Integration (SI) is a term that refers to the way the nervous system receives messages from the senses and turns them into appropriate motor and behavioral responses. Sensory Integration Disorder is a condition that exists when sensory signals don't get organized into appropriate responses. It makes it difficult to process and act upon information received through the senses, which results in challenges in performing countless everyday tasks. All kids with autism have sensory integration disorder but NOT all kids with sensory integration disorder have autism. Confusing right?

JD had two evaluations today - one for OT and one for Speech. The OT eval took about an hour and went well, minus the tantrums and crying at some points. Then we met his new speech therapist Holly. We took JD into the room and she watched as we interacted with him and let him play a bit. Also after 20 minutes she said to us, "I don't think it's autism. I only see sensory integration issues." Let me tell you how much I feel like a ping-pong ball going back and forth with doctors and therapists. Our initial diagnosis of autism was in March, so we started ABA (behavioral therapy). Then I had a gut feeling something wasn't right, after doing research on my own I saw more sensory issues than autistic issues so in April I took him out of ABA and started looking into other options. Then last week another doctor evaluated him and said autism, and then today a therapist said it's sensory integration disorder. AHHHHH! Well I'm going to do two things...

First - I'm following my gut because if I've learned anything in life it's that your gut is usually dead-on. I believe JD has sensory integration disorder and from this point in time I'm going to do everything I can to learn more about it and ways that I can work with him to help him at home. Luckily the preschool he's starting at next month is based in SI (sensory integration) which means that everything they do during the day is based on helping manage/develop/correct their sensory issues.

Second - I'm going to stick with the "autism" label because it's what insurance recognizes for therapy purposes. Well since all kids with autism have SI, then their therapies focus on this area. Occupational therapy is designed to help with the sensory system and luckily our insurance will cover occupational therapy if JD has a diagnosis of autism.

So here's where I get frustrated... how do I know if he's one of those kids with sensory integration disorder who DOES NOT have autism or if he's really autistic and has SI? I guess time will tell. Kids who are not autistic and have SI can grow out of their disorder through loads of therapy. So this is where I'm focusing. I'm crossing my fingers, but not too tight.

Therapy begins 1st week of June!

Hi everyone! I'm excited to say that we've enrolled JD in the PowerMeKids summer program and he'll be going on M/W/F from 9:00 - 1:00! I'm really happy with the director, the teachers and the program itself. I think he's really going to enjoy it and learn so much from being there! He starts on the first Monday of June so I'm really anxious to get going! I'll keep you all posted on how it goes! Tomorrow he has his evaluation for his one-on-one speech and occupational therapy, that will be about 2 hours long.... ugh :(

On a side note, I found this awesome piece of jewelry and I'm having a lady on etsy try to replicate it for me! Isn't it pretty! It's so hard to find unique autism awareness jewelry.

Ahhh Organization! You Gotta Love It!

Today was a good day, at least I think so. To most people today probably would have been a really bad day, but to me it gave me a renewed sense of purpose, organization and focus.

My day started with taking JD to his 2-hour evaluation at Early Steps. There was a group of about 5 professionals evaluating JD for different developmental milestones, behaviors, etc. He also had his hearing checked, which came back perfect. They evaluated him using the Battelle system - a 450 question test that looks at all aspects of his development. Dr. Lynda Pollack who is a pediatric behavioral specialist as well as the medical director for the Early Steps program was there and confirmed to me that JD has autism. I was upset, don't get me wrong, but having that second opinion really helped me come out of denial and move forward with what I need to do to get him help.

I sat down tonight and finally put together the binder that I've been wanting to do since I got JD's first diagnosis. I think the denial just kept me from doing it. But tonight I went through everything - all of his evaluations, all of the paperwork, handouts, etc. and put them in order. I also created the therapy plan I want to follow along with an estimated expense sheet. I feel a lot better and I'm ready to move forward.

There are two people who really helped me out today. First is my friend Amy who came with me to Early Steps to help me watch Kyle while JD was evaluated and then watch JD while they explained his results. Then my sister came up tonight and helped me get the kids ready and in bed and my house cleaned up while my husband was at a 2-day conference. It made the day so much better with them there. Thanks guys :)

Insomnia

Every night I sit in bed trying to sleep - or I'll fall asleep early, say around 9:00 and then wake up and can't go back to sleep. I'm in this trap of insomnia and I feel like it's just getting worse as the stress increases. The only thing that helps me sleep is getting up and writing down all my thoughts so that I can finally put them to rest in my head, so here I am now doing just that....

Tonight my head is filled with worry about tomorrow and Friday because tomorrow we have JD's 2-hour evaluation with Early Steps - Florida's Early Intervention program. Then Friday I have a well check for my 6-month old Kyle. This normally would not be a big deal, but I haven't even gotten his shots from his 4 month checkup (which I forgot to schedule) and now with all of this going on with JD I'm just not sure I want to have his shots done right now. I know what the doctor will say - there's no scientific proof that the shots are a cause of autism - but all I know is that looking back, I starting seeing signs of JD's autism when he was about 7 months old. So that freaks me out. I know they are going to pressure me into the shots (and I agree he needs them) but I'll hate myself forever if I go ahead and get them and then the same thing happens to him. I just don't know what to do.

Also on Friday afternoon I'm taking my parents to go see the group therapy preschool I'm enrolling JD in for the summer. I've spent HOURS researching all of the therapy options in the area and there are tons, and I think this is my best bet. With two other kids to take care of all day, it's nearly impossible for me to give him the attention he needs to work on his gross motor, fine motor, speech, sensory and behavior issues. When we're at home he sits and stims with his trains most of the day. I try to pull him out of his world, but I also have to feed a 6-month old 5 times a day and pay attention to my 3.5 year old. I can't just ignore them so I can work with JD. So I've decided the best bet is to take him to this small preschool that helps them learn those skills for about 4 hours a day. It's fairly expensive - $160/week, but when you compare it to 1:1 therapy it's actually way less expensive, even if that's covered by insurance. The problem is not the program, it's getting my dad to agree to pay for it. He's the one funding JD's therapy and when we first found out about his diagnosis he said that he'd help by paying for therapy. Well I finally get a plan in place and now he wants to "talk about other options".... the stress that adds to my life is enormous. I feel like I have to plead my case on why this is the best option in order for JD to go. I understand that it's his money and he needs to be involved with the decision, but I wish he understood how much time I've spent looking into the other options and just trust that I'm not making this decision out of haste, but rather hours of thinking about what is going to work for JD and our family as a whole. He just thinks I'm too emotional - but I'm not sure how I take my emotions out of this process.

I think the worst part of all of this is the depression that I've fallen into. It's getting worse and I find myself avoiding family, friends and even my kids because I just can't handle anymore. Everyday is such a struggle and unless you have a child with the same issues, it's hard to understand. Simple things like eating, changing diapers, getting into the car, trying to communicate are so much more difficult. It just wears on you as a mom. I've met with my doctor and we're working on a solution, but in the meantime it's just really hard. My emotions are like a rollercoaster and the smallest things could set me off for the whole day.

Well it's 1:30 and I better try to fall asleep. I wish I could turn off my brain like Jason can... I just sit and stare at the ceiling wishing I could stop worrying.

A Rough Day

Today was really hard and sometimes it's even harder to explain how I feel to friends and family. I spend a lot of time reading blogs of other moms in the same situation as me and tonight I read this posting from http://realityofautism.blogspot.com/. I sit here and cry because I totally understand how this mom feels and she's been doing this for over 5 years now. It scares me, but at least I know that I'm not the only one feeling this way. I want to post it on my site because it basically sums up my struggle right now.

Thursday, May 14, 2009

Burn Out
I've been on this autism mom journey for at least 5 years now. My son is 7, but we started his treatments at age 2. I can hardly remember life before autism -- now it consumes me. I'm on a constant quest to read the latest treatments, causes and cures. The push to "fix" him of autism always burns within me. It's not over yet, but I'm starting to wonder what it would be like to have another passion. Yet, I can't go there until my son is in a better spot.I never thought I'd tire of this fight to find him the "right" cure or therapy. I spend at least one hour, sometimes up to three hours, a day reading about biomedical interventions that might work or the latest research on autism. I subscribe to four list-srvs of various autism parent groups. I get constant e-mails from other parents of what they are trying and whether or not it's working. Most of the time, I find this journey to be so beautiful -- reaching and connecting with my son. What more could a mom want to achieve? But, lately, I just feel less within me to give to autism. I still have energy to be his mom, but I wish I could just be that -- his mom. Instead, I have to put on the hats of behaviorist, medical expert, insurance fighter, educational advocate, vitamin dispenser, speech therapist and autism researcher. At times, I wonder if he even gets enough nurturing from his mother. By the time I fill all the other roles required of an autism mom, I don't much feel like just being in the moment with him. I wonder what I used to be passionate about before my autism journey began, what it felt like to not have this on my mind 24/7. I sometimes miss my old self. I'm so grateful when people do want to know how my son is doing, yet miss how people used to talk to me about politics or sports or something light. Now its, "how is his speech?" "Are the b-12 shots working?" "Do you do the gluten-free diet?"Don't get me wrong, this journey has had more gains than losses. I have learned to love more deeply, appreciate life more fully. I just never thought I'd reach burn out level -- and it makes me feel so guilty. How could I burn out of healing my own son?

Visual Stimming - Why does he do it?

Since JD was less than a year old, I can remember him laying on the floor and running objects (mostly cars or trains) past his face or putting his eyes right at the level of a table and running the objects as close to his eyes as he could get them. He also likes to look at things out of the corners of his eyes or "fly" objects past his face really fast. When he was little I had no idea what it was, or even that he was doing anything other than playing. Now I know it's called visual stimming. I often sit and watch him do this, usually after unsucessfully trying to lure him away from the table and play with me. I wonder what makes it so interesting to him? What does it feel like and why does he do it? Well today I looked up some info on other sites that I thought were interesting so I am posting them on mine...

(Written by a therapist)

I have found that visual "stim" behaviors serve one of several purposes. First, they are often very calming and organizing when children are overstimulated, second they may be a means of stimulation when a child is underaroused, or they may be a means of visual input when a child has poor oculo motor contol and does not get meaningful information from their environment.

(Written by a teenager with autism)

When I do that it's because I like the way it looks or because it reminds me of something I've seen that I want to see again. It's either a stress reliever or it answers some sort of environmental question that I'm hung up on. Or it satisfies an obsession that I'm unable to act on for whatever reason.

(Written by a mom)

Ages 2 - 3, my son used to lay his head down on the coffee table to look at items on the table from that angle. He would also hold toys up to his eyes and look at them through peripheral vision. He used to lay his head next to the train tracks so he could see Thomas coming right by his face. He loved to stare at fans and bright lights. By age 4, all of these behaviors went away. He had speech and OT since age 2. It's hard to tell whether the OT really helped this or whether he just grew out of it.

I thought that was really interesting. From what I've learned, stimming itself is not a problem - we all actually "stim" by zoning out watching a tv show, chewing our nails, etc. - but it's the fact that kids with autism have a harder time focusing on another activity without trying to stim. Today we ran into that problem when we did speech therapy. JD just wanted to stim with his trains the entire time. We just try to enter into his world and play with the trains with him.

I hope he'll outgrow it someday, but it's just a little quirk that makes him JD :)

Someday...

I was in the car the other night and I heard a song by Rob Thomas, it's called Someday. I felt like he was singing it just for me...

You can go, you can start all over again
You could try to find a way to make another day go by
You can hide, hold all your feelings inside
You could try to carry on when all you wanna do is cry

And maybe someday we'll figure all this out
Try to put an end to all our doubt
And try to find a way to make things better now

And maybe someday we'll live our lives out loud
We'll be better off somehow, someday

I don't wanna wait, I just wanna know
I just wanna hear you tell me so
Give it to me straight, tell it to me slow

Cause maybe someday we'll figure all this out
We'll put an end to all our doubt
Try to find a way to just feel better now

Maybe someday we'll live our lives out loud
We'll be better off somehow, someday

One Month Successes!

I've posted a lot tonight to try to catch up with the past month, but I forgot something really important... to take note of all of the successes we've had! It's been such an exhausting month, but we look at how far JD has come, it makes it all worthwhile!

I think our biggest success is JD's language. Now he's not speaking in full sentences or anything BUT he's made huge leaps! When he was diagnosed a month ago he had about 6 words... go, yea!, wheee!, five, chugga chugga and choo choo. A month later and we're at over 30! It's AMAZING. He's picking up things left and right because we're working so much harder with him. I started by using an approach from behavioral therapy called VBA (or verbal behavior analysis), it's done by pairing an object by saying the word OVER and OVER again until they start repeating. It's not easy by any means! His first word was bubble and when he was able to say that for the first time, it was like his whole face lit up. He was so proud of himself!

My favorite thing he's learned is to say "i love you" by pointing to his eyes, then his heart and then me (or whoever is doing it with him). It's so uplifting that it can fix any problem in my life. I have no clue if he understands what he's saying, but to me it's worth a million dollars!

JD has also become much more interactive this month. He learned how to wave (something he should have started around 1 year) and he has learned how to bring me things when he wants something, such as his sippy cup for more milk. Before he just threw it at me. I know they seem like little things, but it's huge in our lives.

We've also totally changed the way our kids eat. We're not doing the casein free/gluten free diet or anything, but we've cut out the junk. JD is eating turkey, fruit, veggies and pasta for almost every meal. We've made it a huge change in our lives to being dedicated to eating at home and it's been huge. The kids eat better, we're spending more time together and we're teaching him good social skills.

I'm sure there are more things to include, but those are the biggies for me! I'm so proud of him and the entire family for changing how we think and do things to make his life better!

Floortime at Home

Another new approach we're trying is called Floortime. It's actually something we've always done with JD, but he didn't know it had a "name"! Basically, in a VERY short nutshell, Floortime is a way of following your child's lead and joining into their world of play in order to open the window into their emotional life. Once there, you start making connections and try to pull them into our shared world of back-and-forth communications, meaningful relationships and imagination.

It was developed by Dr. Stanley Greenspan and is widely used by parents of children with autism. The goal is by bringing them into our world and getting them to have ongoing interactions then you can help them move up the developmental ladder. Here's a website if you want to read more - it's a 10 minute read but it's really interesting! http://www.icdl.com/dirFloortime/newsletter/FloortimeWhatitReallyisandisnt.shtml

Postive Behavior Support and PowerMeKids!

So here we are in May, a little over a month since JD's diagnosis. We went through about 3 weeks of ABA and after stressing about it day and night, we decided to try another option. I think we've found something that will work better for JD. After all - if I've learned anything from reading autism websites and blogs it's that there's no "one-size-fits-all" therapy for kids on the spectrum. Here's our next step...

After looking into EVERY program in Orlando I found something called PowerMeKids (http://alltherapyconnection.com/PowerMeKids.html). It's a preschool-like program for kids with diabilities. It's based on the principles of incorporating sensory intergration skills within a social setting and using positive behavior support (PBS). Are you asking yourself WHAT THE HECK DOES THAT MEAN? Hahaha, I did too :)

Instead of ABA, which basically focuses on changing or eliminating problem behaviors, PBS seeks to find out what the problem behaviors are coming from (such as an over/under stimulated sensory system, problems with gross or fine motor skills, social issues, etc.) and then attempting to help solve the problem by working on those skills or changing the environment to cope with those issues. It's really interesting. PBS is actually based off ABA research, but tweaked a bit. It doesn't have as much scientific data to back it up - but to me it seems like exactly what JD might need. It will give him a small social group (he'll have two other kids in his class) and he'll be working on ALL of his skills, not just behavior. He starts on the first Monday of June and I can't wait... I'm SO excited for him!

Our Experience with ABA Therapy

I love this picture... it's pure happiness. Poppy (my father-in-law) built the kids a swingset just before we found out about JD's diagnosis and I swear it's the best place to go when any of us are feeling down. It helps me remember that he's just like any other little boy and his smile always makes me feel better!

The last month has been tough. We started JD in therapy in early April, focusing on ABA which is short for Applied Behavior Analysis. It's a type of behavior therapy that is based on the science of Skinner. For the month of April he went twice a week for 2 hours a day. I can say that it was truly painful to watch, but it has the most "scientifically proven" success for autism therapy. Three weeks in and I couldn't watch anymore. JD spent at least 60% of the time crying on the floor or in a chair. It's part of the program - trying to stop the unwanted behaviors from happening) but my gut told me there has to be a better way.

For nights I researched alternatives and it was such a hard decision to take him out, but we did. I am sure ABA has helped MANY people out there and if you do any research on the internet you'll find just that. Many people say it has changed the lives of their children. I just couldn't do it - at least not yet.

Our New Beginning...

JD turned 2 on March 20th, 2010. It was a day filled with fun, family and friends, themed around Thomas the Tank Engine - JD's favorite thing in the world! We rented a trackless train, one where the kids could ride all around and he loved every minute of it. It was a wonderful day and the last day before our lives changed forever.

The next day was JD's 2 year well check. The doctor noticed how delayed his language was and asked me a few questions on how he communicates. In the end he said he was showing some "signs of autism" and told me we needed to see a behavioral specialist. My stomach sunk. Even though I was truly surprised, it still hurt. I knew he was behind in many developmental areas but I just figured he'd catch up.

A week later (7 entire days of agonizing!) we met with a pediatrician who specializes in behavioral disorders and he told us JD has high functioning autism. Since we'd had a week to research and prepare, I wasn't shocked. I saw videos after videos on YouTube of other kids his age doing the same sorts of behaviors. But you still hold out hope that it's something else.

It's been a month since that day and the whole family has gone through our ups and downs. It really just feels like a roller coaster of emotions. But tonight I'm starting this blog so we're not alone in the journey! Friends, family, even strangers who might be in the same situation.... come follow JD's Journey!