The journey we walk.


I find myself on a roller coaster many times.  There are times when it's downhill, in a great way.  The days are tackled, everything under control.  A feeling of "I CAN do this."

And then there are the uphill climbs.  Chugging along, jerking upward, a feeling that the crest of hill will never come.  That is this weekend.


Only in the last couple of months have I really realized and accepted that David has special needs more than what I ever imagined in the beginning, and they will never "go away" or "be cured".   I have learned so much about approaches to guide him in life.  I have watched him grow and flourish and seen his brain expand like a sponge with knowledge that reaches far beyond his years.  I have seen him go from barely saying 30 words to talking on an almost adult level.

I've also seen him struggle more and more as he grows.  4 years ago I knew something was up.  And when I learned he had a speech/developmental delay I jumped in ready to do what it took to get him the help he needs.  As you know, it happened, he grew, he started talking.  It was wonderful.  And then more issues emerged.   As always I listened and continue to do so, to my gut.

With the help of a few wonderful people in David's and my life, we realized he had Sensory Integration Disorder.  This began answering lots of questions for us.  And then a sadness hit me as I knew again more was up.  Followed that, sure enough he was diagnosed with ADHD/ODD and anxiety disorder.  And now, as I've known for a long time, we are in the process of getting his ASD diagnosis.  It may not be on paper...but....I 'know' it.


For whatever reason, this weekend has just been a 'thinking' one for me and a tough one.  I think from just being overtired and that darn full moon, and some rough meltdowns, I found myself thinking....
I don't know if I can do this.  I don't know if I can help him or if I'm helping him.  I don't want to fail him.  I love him way too much.  I love both of my sons more than breath itself. 

Some days are just so overwhelming because I see Aaron wanting to play with his brother so badly, but David wishes to always retreat to his own world, disassociated with anyone in 'real' life.  He's here, but not 'here'.  I think about the future and wonder how it will pan out.  Wonder, despite the needs, if he and Aaron will be close as brothers.  We continually try to bond our family together.  And pray.  There are days, I think that is the best we can do.

There are times that I wish and hope that David will never have to hear anything negative or hateful because he and other other children face life with a few weights.  BUT they do continue to conquer!

I think many times too, as a parent, that's why I get so frustrated, so overwhelmed, and so sad when I hear people talking about "those bad kids" who throw fits in grocery stores.  Or can't listen for more than a minute.  Or can't play with others.  Or are anti-social.  Or people don't want to deal with them. Or they just need more discipline.

I take it personally because I think of "my" child.  My child does many of those things.  Because situations can quickly become overwhelming to him [sights, sounds, etc] he can go into a meltdown.  That is how is brain and body cope and try to make sense of what's going on around him. 

He truly can only handle smaller amounts of time on a task because his brain begins to go into overdrive, more or less shutting down.

Though he may be around others, he doesn't play much with others interactively because it also overloads him. 
He's anti-social, he makes strange sounds, he talks quite continually, often times to himself... because of the spectrum issues.

But I'm thankful that there were and ARE people who WANT to deal with him.  Myself, my husband, his teachers past and present.  They understand.  Thank GOD they understand because they have been there to support me to be able to help him!


Hopefully one day, more and more people may understand that.
Whether you're a person passing me by in the grocery store, a fellow parent at the park, a passerby in the mall, an education worker, an employee of a business that we are at... and you see him with his ears covered or talking to himself, or making strange noises....know that these are his special needs coming out.

But what I would want you to know more is that he is an exceptional young man full of love and light.  Full of information that he so badly wants to share.  Full of curiosity that leads him to books full of knowledge and adventure.  Full of imagination that has him playing school, chef, and storm chaser.

But I also want you to know that on days I seem cranky, tired, or grumpy I probably feel like
....I've failed him.  I may need a break.  I may feel overwhelmed.  I may not know what to do.  I may be frustrated and taking everything personally.

It's normal, I know it's normal to feel that way now, though I don't like it. 

So remember, look at my son through new eyes.  Ask him about the weather!  Ask him about the human body!  Ask him what he likes in life! 

Ask me if I would simply like to talk, sometimes a listening ear is all I need!


The journey continues!


 

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