Ahhh... now I get it

Not long ago I was complaining to a friend about a relative of mine that just never seems to appreciate anything.  Whether it was clothes, food or rides, it all just seemed to be expected, and would pass without so much as a thank you.  My friend pointed out that since this relative really didn't have much, maybe she was just tired of saying thank you.  At that time I really couldn't comprehend it.... today though it clicked.

For parents that have children with special needs, they are tired and exhausted every day .  There is always something to do, fix or make.  For mothers out there, think of having an infant, those exhausting nights, the frustration; or think of the toddler years, the power struggle the need for independence without the ability. Now think of this for the rest of your life.  This is what parents with special needs children face every day.  No, they are not looking for your pity, but they are tired of asking for help!

• Don't ask them what is wrong when they are having a bad day, if they explain it they relive their guilt for feeling it. 

• Don't ask what you can do, just jump on in and do it.! 
• Bring a casserole, give their dog a bath, mow their lawn or simply send a note to say hi..

Because if they have to ask for help, its just one more thing on their to do list.

 

Walker's eval

Today was Walker's evaluation for preschool.  I was a little nervous about it because whenever the evaluations come its a hard pill to swallow.  Mostly the evaluations are about what Walker "cannot" do, this is just because its how the State and education system look at it to determine what services he is eligible for.  Its not a fun time for me, because it often just reiterates all of my fears about him.  Ramiah chose to stay home with Sawyer and my guess is its because he feels the same way, but one of us had to bring him so it was me!

I must say that the people at the center were really great!  The evaluation was done all together, and although it was a little overwhelming answering different questions simultaneously it was easier to get it over and done with!

The last part of the evaluation was what I was most interested in seeing, it was his evaluation in the classroom.  Since Walker has many sensory issues I wasn't sure how he would react to an environment with lots of action. He was also getting tired since it was cat nap time plus he did a lot of work during the evaluation that would normally tire him out!

I am happy to say that he loved it! At first he just sat pretty quiet, listening, but as the aides and teachers fawned over him he opened right up!  he was blowing raspberries and making his excited noises. 

I also have to say that one particular evaluator was sensitive to how the numbers will come out for his scores, since they will come out low, but wanted to prepare me for it.  It was refreshing!  Often times parents come out of doctors appointments, evaluations and other social situations feeling defeated once again that their child just doesn't measure up.  It just reinforced that this center is the right one for us!!

A beautiful day in Walden

Today was a GREAT day!!  The weather was beautiful and I was reminded how rich we really are!  Friends and family came out to walk by our side for an great organization call Able Children. This was their second year of promoting their organization and raising funds and I can't spread the word enough!!  This organization gets equipment out to Special Needs Children who either can't afford it or get lost in the bureaucracy of insurance and can't get what their child needs.

The day was beautiful!  Mason and Dylan were excited to be #1 and #2 (although, I think mason was a little upset to be #2)

My husbands brothers came out and so did my mother and sister with her family.

Dylan was going to run it, but then at the last minute got an escort to find us!

The course was pretty hilly, but definitely beautiful!

Even my friends from Stroller Strides came out and three of them are pregnant!!!

Thanks to Walker's PT he was nominated to get a corner seat!  Thanks Marcia!

So after our beautiful walk through the town of Walden, they presented Walker with his chair!  I know he will get a ton of use out of this chair! 

yes, we are rich!  rich with love from our friends and family and a community that supports us!

Friends Needed

I feel like the new kid in school, have you ever been that kid? I have, several times in my life. 

Its that feeling of wanting to look your best, do your best while simultaneously feeling out the other kids in the class to find where you belong. 

You are afraid to pick the one person to eat lunch with, you want to keep your options open but not be alone either.  You question if you can take anyone at face value? or if there is some secret lingo that you aren't clued in on, worse yet, could you be what they are laughing at? You are afraid that you might come across to desperate, or eager.

Well, that is me, once again, but this time in my grown up life, its in this new world of disabilities, or is it called special or handicapped? I don't even know what the acceptable terms are and this is my child!

I've been feeling isolated and lonely these past few months (no offense to those who have been in my life for a while or my newest friends!) This is more about my personal journey with Walker and how my family now fits into this world, that I needed to find a "place" a knitch if you will. So I started a meet up group, Orange County's Special Kidz , but it isn't really taking off like I had hoped!  Its just a matter of getting the word out.  So if you have any ideas, or friends or friends of friends, please pass the word on.

I'll be the girl in the sweater, with a bow in my hair and carrying a sign "friends needed"

Extra baggage

A large part of our HBOT journey has been meeting and connecting with so many other parents and children, all looking outside the box, to give their children a better life, in whatever form that is.  Monday I met a gentleman and his daughter in the waiting room.  She was about 10 years old and has Autism.  That day, I took Walker by myself and when its just him and I we use his adaptive stroller. The man commented on what a nice stroller is was and I went on a commentary about how hard it is to carry him around these days and that I have to start really using his equipment..blah..blah..blah....

He just smiled, and gave a little chuckle. My face must have shown my confusion, because he apologized and told me that he is still carrying around his daughter because she has outgrown her wheel chair.  I was marveled!  She has to be at least 75 lbs!  I didn't want to be too obtrusive and ask questions,but couldn't help but give some reference to our TRAID program  here in Orange County. I also gave kudos to my social worker and therapeutic team, (wait, did I say mine? I meant Walker's).  His daughter was called into the office and we said our polite "take cares" and "nice talking with you" and he flung her up on his shoulder and carried her into see the doctor. 

It just made me think about our situation and wonder how many children out there do not have what they need? Was this girl being carried around because of insurance issues? because they did not have the right resources to tap into? or because it was just easier on some level for him to carry her around than deal with a chair and then transportation and all that comes with it?I just felt horrible for both of them, for the dad who is lugging a 75lb daughter around and for the girl who has no sense of independence.

It also makes me nervous about leaving the comfort of Early Intervention and being in the real world of disabilities. We have to start thinking long term, in regards to what Walker will need and how to best prepare ourselves for that.  I don't expect to have a custom built home, but I certainly don't want to be lugging him around at 75 or 100lbs! 

HBOT Day 18

I had an octopus in my tank today!!  he was grabbing the tubing, pulling the mask off his face, grabbing the oxygen bag and just being an ick.  For a few brief moments I was getting frustrated, then I realized... he's being two!  this is what we wanted right? We want him to be moving around, being a pain in the butt!  I just laughed and enjoyed him being a toddler!

After our session we went over to the organic grocery store to pick up a few things.  I put Walker in a grocery cart because he is getting to heavy for me to carry around a store.  To my surprise he held himself up in the cart!  It was AWESOME!

The Calm

Overheard in the HBOT parking lot today:

"yes, the session went well, she had a bunch of different colors, and then we will come back at 12:30 to dive and then she'll have another session at 2"

dad is talking on phone while daughter walks around the car, (daughter has autism)

"yes, she is doing well... ah, (man pauses in conversation and makes a huge sigh) okay, well sofie just keyed my car...how do I know?...well...she spelled her name....let me go"

This man is amazingly calm, his daughter just scratched her name in the side of his car and he doesn't get mad or scold her, instead he puts her in the car and just stands there looking at her art work.