How do you do it?

((This is an older post I wrote on wordpress on Feb 7th of this year. I wanted to repost it here so all of my Blogger readers could see it, and so I have a reminder to myself as well.))

How do you do it?

I am often asked this question about many things, but mostly in regards to raising my son.

How do I do it? Do what exactly? treat him like a “normal” kid, understand his needs and wants? Communicate on his level of understanding?

Or did you want to know how I handle the stress of his condition? his diets? his behavior? How do I deal with the doctors, the help? the people in his life that treat him more like a disease then a person?

How do I do it?

well, I ascribe to this crazy Idea that people are more than their limitations. That A child is a person deserving of understanding, respect, love, and patience. I accept his limitations without obsessing over them. I try to accept my own limitations without obsessing over them, and we meet somewhere in the middle. We teach each other, we learn from each other, and we grow together.

Yes it takes strength to do what I do every day. Amazing strength. And yes some days it’s more of a struggle then others. But If you learn from your children. If you accept who they are and who they are becoming on their own time, You can turn a tragedy into a joy.

And It’s my job to make sure that I do the best I can for him.
Sometimes that’s the hardest part. Making those decisions about the future when I have no idea where we will be in the future. Everyone Has an opinion, A treatment, some piece of advice that worked for them or someone they know with a similar condition. I say good for them.

but this is my son. These are my kids. I am their mom. It’s up to me to make sure that they feel happy, safe, loved, accepted, and cared for. Because one day, the rest of the world will not be so kind. One day people will treat him like he is a lesser being because he is “different” and on that Day. I will be there to tell him that It’s ok. Because it is.

counting the days

until everything changes...

I just needed to de-stress a bit. I am so nervous about our appointment with Early Intervention. This is going to change so much of our lives. I'm not sure how I should feel about it. On the one hand. I am excited to work with these people and figure out how best to help my Little Bear with his difficulties. It's the other hand that bothers me. On that hand, he will be "officially" "disabled". With a "Team" working with him. Not just me.

The difference doesn't seem all that much from a practical point of view. He is no more or less "differently-abled" with or without a team of people knowing about it. I do really think that the "help" would be great for him. I just don't want to have that conversation. It's the whole developmental assessment I'm afraid of. The whole "how disabled is he?" conversation.

I hate having that conversation. I hate having to measure every little thing he does or doesnt do, and then worry about his future. I have enough to worry about already. (like how to get him to eat food instead of peanut butter and bread).

And I do worry. Somewhere in the back of my head..there is a constant worry..Ive tried to bury that voice as much as I can, and just enjoy the moment. I'm his mom, I need to be that first..but that voice..somedays that voice just wont shut up.

And having people around Talking about my son, comparing him and his abilities and behaviors to other kids his age, just makes my blood boil.

Because he will never be like other kids. He will always be my Little Bear. Intervention, Medications, Therapy's, none of that will erase who my son is. Just what he is able to do.

I have to keep that in mind..when that little voice starts talking.

The one that says.."what about the future?!" " will he ever..." "is it normal" and "why donest he"

I need to shut that out as much as possible. He will, He is, He does.

Just in his own way.

Now all I have to do Is convince a bunch of gov bureaucrats to think the same way.

wish me luck. (I'm going to need it)

Getting "help"

Well, I did it. I made the call to Early intervention today. I called all over town and out of town trying to find a private OT/PT/and Speech therapist for my son with no avail. (no one will take our insurance) I'm still fighting to find a way to get him into the Awesome Therapy Center in the city, but for now I have to use the Gov Early Intervention Program. It's not so bad. I love our coordinator and so does Little bear. I'm hoping that now that he is 2 they will have a few better options for us then they did when he was a year old. He is doing very well, but has a speech delay. Our pediatrician expects us to use the Early Intervention Speech Therapist. I was very resistant to the idea at first, but dang, I have tried everything I can think of, from rhymes, to songs, to English as a second language. He loves it all, but he still only uses single words, and not too many of those. He understands language just fine, so I'm hoping that this is just a phase.

We will also be talking with an OT and PT again, to see if they can help engage him in using his affected hand and arm more, as well as gross motor coordination.

I'm a bit nervous, I would prefer him to have specialist care, and I think I'm going to keep calling around. But If this works out it will be an immense help.

productivity plans are bad for me.

I spent all day today trying to maximise my productivity. I hardly got anything done around the house, but I did manage to launch the homeschool blog (http://appletreehomeschool.blogspot.com/) and make a few lists to remind myself to be productive in the future. I think I'm starting to grock all this crazy homeschool stuff. I'm afraid this is turning out more fun then work. Is it supposed to be so fun? making lesson plans, yearly goals, collecting materials for activities, making reward charts, finding good books...Maybe I'm weird, but I really love all this stuff. I can't wait to start. We are aiming towards the fall, but we will see. I still have little bear to teach, so we will see where Jediprincess fits into all of that. She isnt doing well in school right now. I would rather take her out completely then deal with Special plans and IEPs. We will see how things go, and try to stick it out for the rest of the year. In the mean time I'm preparing. Gathering supplies, collecting information, reading blogs, and trying to get ready for the biggest adventure of my life. Homeschooling 2 unique and gifted kids, of different ages, with different abilities, fulltime!

Wish me luck! I'm gonna need it.. :)

Loss, Angry birds, and banana splits

We took a trip downstate this past weekend. To see my dad for the last time. His cancer has gotten worse over the years, and after the heart attack over Christmas they had to stop his treatments. We don't know how long he will be around, right now it's a waiting game. The Family got together to say goodbye and to make sure that we were all on the same page regarding his end of life care. He is at home, he will stay there. There are talks about hospice and changing medications. I couldn't follow most of it, I was trying too hard not to cry. It was amazing to see everyone crowded around his bed and talking and laughing, and treating dad with the respect and dignity that he deserves. The kids had a fun time. Little man loved exploring the house, and DD played angry birds on the ipad. The kids are mostly oblivious to what is going on, although I did talk with DD quite a bit before we arrived to soften the blow later, I do not know if it will help or not, but she is old enough to know. We made sure to take a trip to the mall as well. DD picked up a red angry bird plushie that she had been wanting forever, and a bag of banna-split-flavored-popcorn. She seemed to be really happy and talks happily about the trip to everyone she see's. DD always loves the city. Mom and I have plans to take the kids to the Zoo next visit as well.

We are home now.

 I'm still a bit in shock, and scared to receive that phone call,

 the one that has my crying mother on the end of the line saying that he is gone. 

I'll cry then, a lot. I'm not sure that I will stop.

He wasnt the best man in the world, 

and he wasnt the best dad,

but he was mine, and I will always remember him.

(btw, Banana Split flavored popcorn is actually really awesome. and DD beat my score on AngryBirds)

If your happy and you know it...

clap your hands!!

seriously, do it, right now.

 Feel that? how your hands feel as they crash together? how you feel as you clap along to the rhythm? Or for your favorite performance?  Most of us don't even think about clapping, we are too busy deciding who and what deserves the gesture.

I'll tell you who deserves it today!
My little guy! He started clapping on his own! I was checking my email, and the next thing I know, I hear this weird sound coming from behind me, It was my little man clapping his little heart out.
Nothing makes me smile more then watching his pride in himself when he reaches a milestone like that.  so we clapped together and laughed and sang "happy if you know it" and reveled in the moment.  When you have children who are developmentally delayed or physically disabled, EVERY milestone is an amazing achievement.
one that deserves to be celebrated to the fullest! 

Happy New year...

One of my Resolutions this year was to spend more time enjoying my blissful-moments...Our road has been a ragged one, but I get the feeling that even though our journey is far from over, we can all breathe a little easier knowing that some of the big rocks have been tossed aside. I am so grateful to everyone in my life who has offered support, a kind word, a cup of coffee or a smile to us in our dark times. I do not know how we would have fared without you.  
Our Story is an ever changing, ever challenging, and ever evolving one, with shifting plots and long winded speeches. It's a story of hope, of triumph over adversity, and of the greatness of the power of love.
We are heroes, We are Dragons, We roar like lions, and Laugh like birds.

And just when you think that you will never make it to tomorrow, you turn a corner, and the light shines as if to guide you on your way.

 let the sunshine in......

New year, new outlook, new blog! I can't wait to see what happens next!