Amazing Accomplishments!

Today was a HUGE day for the Graham Family but unless you know our situation, or have a child with autism, you may have completely overlooked it. This morning we turned on Chugginton, which I knew would be a big hit with JD because he loves trains. Then the small miracles started to unfold...

Immediately he got up and asked for help to get his tunnel and tracks out of the closet. (He used pointing and words for help!)

I took them out with hesitation (because normally he gets so frustrated with them that he ends up in a huge tantrum), but when I gave him the box he AMAZED me. Instead of taking them over to his favorite table in the corner, he placed the box on the floor and started putting the tracks together! In THREE years my child has NEVER played on the floor. It's because it's not at eye-level, which parents of children with autism know they prefer to do to so they can "stim."

If that wasn't exciting enough, I then watched Ashley come and play with him, helping him put together the tracks as he pretended to play with his trains. TEARS started dropping... they've never played together like this before. I sat there and watched, cheering them on, and took pictures like it was the biggest feat in the world. But to us it is - it's a huge step in the right direction. Almost exactly a year ago we found out about JD's autism, and as a family we've worked so hard. Today was one of those days you wait for, that you think will never happen, but amazingly enough they do!

Here are some pictures of our happy day. I wanted to share it with all - it's an inspiration! I am so proud of my little boy, for moments like these come so easy to others but for him it all had to be learned. Communication, pretend play, no "W" sitting, no tantrums... all huge accomplishments!

I love you JD!

A few of his favorite table and the wear and tear it's taken over the last three years.... all morning it sat empty, and that made me smile :-)

A Little Insight from Mommy...

It's almost been a year since we heard the words, "your son is on the autism spectrum" and I can truthfully say it's been a roller coaster ride. My world felt like it was crashing down right before my eyes and as each month went on I realized how much I never thought about all of the people around me who have gone through, or are going through the challenges of having a child with a disability. I guess when things are fine you really never give it a second thought, you think everyone's lives are just like yours. That's why I wanted to give some insight into what it's really like, from my perspective at least. It's not for pity but for understanding, because even though there are many things parents like myself face, we also have so many blessings that our children give us that I would never give up. So here's the good, the bad and the ugly!

THE GOOD:

1. You learn to appreciate the little things... I remember when JD first said the word train I was so excited. We must have worked on it for months. He was so proud of himself, and I was so proud for him.

2. You start realizing that life isn't all about you or your family.... when you are in and out of doctors offices every month you see things that make your heart sink.

3. You have to let the little things go... and for me that meant control. I couldn't control what happened and couldn't change it, but I learned that's ok.

4. You get to become an occupational therapist, a speech therapist, a behavior therapist... the list goes on and on. You have to learn about sensory integration problems, listening therapy, diet alternatives, neuro treatments. And hopefully you can learn it overnight because it becomes your life before you can even blink!

5. Your heart grows, and not just for your child... all of the people you meet that become a part of your life - therapists, friends, other ASD parents, nannies - you love them like they are family.

THE BAD:

1. You blame yourself everyday... If I didn't take this med during pregnancy, or if I spaced out his shots, or caught it earlier... everyone can tell you that it's not your fault and you know this, but you still think in some way it must be.

2. You wonder about the future... what is his life going to be in a month, a year, in 20 years? Will he talk, play sports, get married? Things you always just assumed would happen become things that may not.

3. You become a referee... everyday you deal with tantrums and as JD grows bigger they just become harder to control. You get hit, bit, slapped, clawed, hair pulled. It's like ultimate fighting some days.

3. You wonder how your other children feel... how much do they understand? How do you juggle your attention equally? Are you doing enough for everyone?

4. You compare your child to "neuro-typical" children when you see them out and about. How far behind is he really? I think sometimes I forget and then I'll see another little boy JD's age and it's like a being told he has ASD all over again.

5. You get mad because nothing is easy... you watch other moms who just take their kids everywhere and can do anything and you know that's not your life. Your life is about therapy, schedules, routine and wondering off that path can lead to a very bad day.

THE UGLY:

1. You get mad at God, really mad. I think every parent with a disabled child does this, it's just part of the healing process. But I think God can take it, he knows we need someone to be mad at.

2. You feel like no one understands what you're going through... family included. Unless they have a child on the spectrum, then you know they just don't get it.

3. You wish things were different... this one I hate. I love JD just the way he is, but sometimes, just sometimes, I wish we had an easier life. I wish for him that things were easier because it's not easy to see them have it so hard.

4. You take it out on your spouse... probably because you can only take it out on God for so long. Luckily my husband rolls with the punches and is there for me no matter what.

5. You cry, A LOT... at least in the beginning. It does get easier, but the evaluations never do. No matter what I always cry after an evaluation - it's like getting hit with a bus.

I will say that each day life seems to get a little better. Maybe I worry less or just love more. ;-)

The Most Wonderful Time of the Year!

I love this picture, actually I think it may be my favorite picture of my little man! It's from Christmas Eve and after opening and arranging ALL of his presents from tallest to shortest (of course all of which were either trains, cars, dinos or bugs) he is perfectly happy. Most kids would be playing - mine organizes. I guess I can kind of laugh about that now because it's been almost a year since we found out he has autism. It's something that would have really bothered me even six months ago, but if there's anything I've learned in the past 10 months it's to love your children (family and friends) the way they are. Stop trying to change them because if everyone was the same this world would be a very boring place! I'm not advocating that we just throw out therapy and behavior modification, because we all know that's the best option for our little ones on the spectrum. But what I am advocating is just loving them no matter what. Sometimes the desire to change things that can't be changed leads to misery... the "what ifs." I'm one of those people, I'm a worrier, but in 2011 I have one goal - to focus on the positive instead of the negative! If JD can do that, so can I!

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! :)