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!