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Rambling….

Diego’s Birthday fell on June 1st.  His party is this Saturday and the way I have been going about it, you would think it was his wedding..lol…but seriously, when Diego was diagnosed, I promised that I would make every single birthday he had a super special one.  Especially now when the “friend thing” is kind of automatic.  So I have been on the grind looking for Phineas and Ferb decor (no easy task), thinking of games, booking a jumper, and making a shark costume….

Shark costume you ask??

Yes…shark costume…Diego wants a full body shark costume for his birthday and I can’t find one anywhere, so I have broken out the sewing machine.  The thought of the look of pure joy on his face is enough motivation to keep sewing late at night so that it is done by Saturday, and hell I’m not sleeping anyway. 

I really hope he likes it. 

PMS and ASD don’t mix.

At all.

My patience level is low.  I cry more than usual, and the thought of a padded room and I.V ativan is very comforting during this time. 

I really thought that when I got past the “this isn’t fair stage” that the “acceptance” stage would be much easier.  It is harder, so much harder that I am going to see a therapist.  I can’t seem to process that this is forever, when logically, I know it is.  I am so sad everyday, can’t sleep, and this feeling of despair in the pit of my stomach NEVER goes away.  I see parents of “typical” children and am envious.  I want to go up to their mothers and tell them to never take anything that their child does for granted.  Cherish everything, because for our kids, for my kid something as seemingly simple as playing is not.  R has noticed and said that it seems like I can’t have fun anymore.  I wish he could feel what I was feeling.  Then he would understand.  He really would.  But he tries and that is more than enough.  I will get through this.  I have to.

I took Diego to meet with the team at what will be his school next year and I am cautiously optimistic, they seem much more organized and concerned about Diego’s transition to Kindergarten than the SD district folks.  We will have the official transitional IEP meeting a week before the school year starts, so that they can actually change some things in it.  So I have some time to sit down and think about a behavior plan, and other accommodations that I want to present at the meeting.  It was nice to hear that Diego has potential, I know in my heart that he does.  It is just validating when a stranger sees it. 

 I will post pics of the party next blog!

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About sonidoinquieto

I hate writing bios *bio pending*

6 responses »

  1. Shivon. You always make me cry!
    Especially this paragraph:
    So I really thought that when I got past the “this isn’t fair stage” that the “acceptance” stage would be much easier. It is harder, so much harder that I am going to see a therapist. I can’t seem to process that this is forever, when logically, I know it is. I am so sad everyday, can’t sleep, and this feeling of despair in the pit of my stomach NEVER goes away. I see parents of “typical” children and am envious. I want to go up to their mothers and tell them to never take anything that their child does for granted. Cherish everything, because for our kids, for my kid something as seemingly simple as playing is not. R has noticed and said that it seems like I can’t have fun anymore. I wish he could feel what I was feeling. Then he would understand. He really would. But he tries and that is more than enough. I will get through this. I have to.

    So well written. It is PERFECT because it is so honest and true. I send you enormous hugs and can’t stop laughing at the PMS and ASD not being a good mix part. HILARIOUS and so so true ! Fi 🙂 xx

    Reply
  2. Um, ditto what all our sisters have written, m’kay? And hugs. Big, squishy, loving hugs. I think the thing that helps me the most is to let go of thinking that I’ll ever “get over” the intense feelings and the waves of guilt, fear, panic, pride, acceptance, etc…they hit when they hit. Sometimes hard, sometimes not so much. Always unexpected. That’s when it’s time to stick my hand in the air and reach for that lifeline, holding on to others’ to help me ride it out.

    Love.

    Reply
  3. therocchronicles

    You are one awesome mama to sew a shark costume! I can’t wait to see pictures. He’s going to have an awesome day.

    Here’s what I found out about this grief stage thing–I didn’t go through them in an “order” and I am not really “done” or “over” any of the stages. That being said, the waves do not crash so hard, and I don’t drop as far when the bottom drops out anymore. Though it is not always the same with everyone. I’m glad you are seeing someone, it helps to talk about it.

    Hugs to you.

    Reply
  4. so much here .. therapy, yes! time for YOU, yes! pms and asd, omg, NO! a team that SEES your boy? HELL YES!

    and um, phineas and ferb? tell me you had agent P?

    Reply
  5. Therapy has helped me tremendously. I’m glad you’re seeking out someone to talk with. It’s a good, good thing.

    Reply
  6. Sister, you aren’t kidding when you say that PMS and ASD don’t mix. And the ASD difficulties always seem to come during the PMS times. At least for me.

    I hope you’re doing okay. I’m glad you’re seeing someone and working on making yourself feel okay. It can be such a hard path.

    Reply

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