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But aside from that, she's still completely normal

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Thank You for Your Support

April 3, 2009 By Michele Leave a Comment

Thank you so much for all your comments on that last post. It’s hard and you get that and know what I’m talking about. And there were no trolls or judgment. Thank you for that.

As far as that situation goes, we had his therapist come to the house and they took a walk. He’s fine now. Of course – he released it all. We are definitely having him evaluated for anti-anxiety medication though. We’ve been dealing with all of this since his birth, but with doctors and all involved we’ve been dealing with it for 4 years. This is the first time we’ve felt that medication might be appropriate for him. It’s a scary step for us.

Spring break is next week, a much needed break for us all. I say, starting the week after next, we all get a do-over.

Special Needs Parenting Sucks

April 1, 2009 By Michele 10 Comments

Disclaimer: I love my boys. I love both of them with all my heart and soul.

That being said…

I HATE being a special needs parent. I hate dealing with their issues. I hate how it drains me after an incident. I hate the feeling of helplessness as I watch my son fall under the influence of his anger. I hate all the appointments. I hate all of it. All of it.

Joseph is coming to an age where I need to start censoring what I write here. So I’ll just say he had one of his worst incidents yesterday.

This part I can say: It resulted in a phone call while Logan, Poe, and I were at the grocery store with a full cart. Okay fine – Poe will go and leave me at the store, I’ll finish up, and he’ll come back when he’s done. Logan and I finish out shopping. We’re checking out when we get another call. I ignore it, mainly because I’m checking out, and I don’t want to be one of THOSE people. Immediately I get another call, so I take it. Cool, I’m now one of THOSE people. I wanted to look at the people behind me and say “This really is an emergency, I promise!” So. All I’m told is “We need you.” I inform the secretary that Poe left me at the grocery store. “We know that. Mrs. X is coming for you right now.” “Wait! I have $200 worth of groceries I just paid for!” “She’ll take them.”

Well, okay then.

So, Mrs. X, the school counselor, shows up and we load my son and all those groceries into her car. She is totally nonplussed. “Ever had to haul groceries?” “Mrs. Wilcox, this is not the first time you and your family are a first for me.”

Well, okay then.

She takes me to the park where my son has run… NOT the school. She takes my son and groceries up to the school while I haul my butt into the city park to try and put pieces together. There are adults with walkie talkies strategically placed to prevent escape. Son is on top of structure with rocks. Husband is talking him down. Husband gets him down, they don’t need me to diffuse after all. All in all… Picture the crazy man on the top of the clock tower with swat in a circle ready to sniper… Now bring that down to an 8 year old level, and you’ve basically got the gist.

I do the mother things to calm Joseph down… Took his shirt off and soaked it in the water fountain in cleaned his face and put the cold on the back of his neck. When he has an incident he overheats. I talk to him to find out the triggers. I talk to the counselor and psychologist to find out what comes next. Mrs. X takes my husband home with Logan while I continue to talk so he can unload the groceries.

He’s uninvited from school until he goes to his therapist which is today. I informed the Psychologist at the school that I’m done with the lack of communication between them and the county therapist and that she is to talk to the therapist before Joseph’s appointment today. Period. Understand? She did. I then almost smacked her. Because she turned to my son and said, “Joseph, I’m sorry. I know that my office is your safe place. When you said you needed to talk to me, I was in the middle of something with another child and couldn’t. That will never happen again.”

They have been dealing with Joseph for 4 years!!! If he reaches out (which we’ve worked SO HARD for him to do) YOU STOP WHAT YOU’RE DOING AND HELP HIM. Otherwise you get yesterday’s situation.

All of it released the steam, and Joseph was fine, if a little drained and remorseful. My parents took him for the night to give him respite, which he needs. He’ll go to the therapist today, which he also needs.

Poe and I debriefed yesterday after everything calmed down. There were portions where he and I weren’t together (him talking Joseph down, and me talking to the counselor and psychologist) so we needed to put the whole picture together. All of a sudden, my macho former marine shaved headed tattooed husband broke down in tears. “You don’t know what it was like, Michele. I’ve never seen him like that before. I thought they were going to have to take him to a mental hospital. He’s 8! I thought I was going to have to commit my 8 year old son!”

And this is what we deal with.

We’re considering medication for anxiety. We’re considering homeschooling. We don’t know what to do. We’re going to impart our concerns to his therapist today, because I don’t know that ANYONE on his case takes it seriously enough. Oh, they take the CONSEQUENCES seriously. I don’t think they take his mental health seriously enough though. I can’t seem to get that through to them. The REASONS for the actions are what concerns me.

And of course while we deal with all this, we have Logan’s open heart surgery prosthetic extravaganza hovering over our heads like an ax. He turns 7 in May. That’s the age in which the doctors told us it would happen – but he’s holding his own so far, so it’s a wait-until-he-gets-worse game now.

I hate being a special needs parent. It hurts so very much. We deal. Of course, we deal. We have to. They’re our children, and we’re going to do everything in our power to help them grow and thrive.

There’s only so much you can do until you start questioning your every move as a parent and wondering if you’re the right person for the job.

Comment Question 3

May 12, 2008 By Michele 2 Comments

This is the last question asked in my question post.  If YOU want to ask a question, feel free.

Steph asked (and I’m not linking to the Steph I know who reads.  I figure if she wanted me to, she would have put the link in the comment, so I’m leaving it out on this one.)

Are your (extended) family and friends “there” for you and your special-needs children? Is their emotional support (or at least being understanding of what you go through with your kids) what you expected, hoped, imagined…

Let’s see.  Yes and no.  My parents…  Yes.  They try.  They try to understand what’s going on with doctors, and like to sometimes take the kids to their appointments themselves, because it gives them the opportunity to talk to the docs face to face.  Beyond that, they just love on their grandkids.  I try to stay out of their relationship, as they keep discipline consistent with us.  Beyond that – I stay out.  My parents live next door.  Each weekend (if my parents aren’t traveling) Logan spends the night on Friday.  Joseph on Saturday.  My parents can’t really deal with them together (they’re getting “elderly”).  This way everyone gets one on one time with Papa and Grandma, and the kids also get a break from each other.  And we get a break from the sibling fighting and noise.  I can’t really say anything about them other than they’re THERE.  No matter what.  When Logan was born, they had Joseph.  I picked up the phone to tell my mom about Logan’s heart.  I didn’t finish the sentence.  She had hung up on me.  Because she was on the way.  I think that’s the best compliment I can give them.  No matter what – they’re there when I need them, and they’re there when the kids need them.  Period.

I the other set is in denial, completely, and totally, and that’s all I’m going to say about them in this forum.  But OOOOOOhhhhh Yes, is there a story there.  Email me if you want the details.

Teachers are all great, because they’re in on all the IEP stuff for Joseph, and Logan has a team as well due to his development issues.  In the beginning we had issues with the previous principal with Joseph…  She wanted him expelled.  5.  in Kindergarten.  That wasn’t going to fly with this mother, and I didn’t toe her line, which made me her enemy.  Over the course of two years I think she finally came around.  ‘Course then she left.  We have a new principal, and the jury is out on this one.  In the last IEP she made this big deal about us not doing homework at home.  So – we’ll see.  She doesn’t seem to get that he can only take so much before he is D.O.N.E.

I think the biggest obstacle in other people NOT related to their cases is other parents.  Both kids are mainstream (although Joseph is in and out during the day for his special ed).  That means they play with “typical” kids.  So – to other parents, Logan is small, immature, and needy.  To the other parents, Joseph is dumb, rough, and mean.  Parents don’t want to take the time to find out WHY they’re that way.  That Logan presents as about a year younger than he is in all ways because of his development from his heart condition.  That he’s a preschooler rather than a kindergartner at heart (hence why we’re repeating it.)  They don’t care that Joseph has learning disabilities, and a psychological disorder.  They don’t care that at heart, all he wants is to be loved and liked with his whole heart.  And if they bothered to ask about anything he likes, he would give them and in depth analysis of whatever the subject is.  They don’t look past the first impression.  Why should it matter?  It makes it hard for my kids to make friends…  No playdates, because the other parents really don’t care to figure out my kids.  The social thing is really really hard on them, and that breaks my heart.

And finally, friends.  I don’t have many IRL.  Not really.  I have one close girlfriend.  If you ask how she is about them?  Well.  She’s the only one I trust, other than grandparents, to babysit.  Even Joseph will listen to her.  And she makes him deals.  Good behavior = zoo trip.  Again…  She just there.  She just lives it with us.

I think that’s the biggest thing.  It’s not their acceptance, or their actions.  It’s are they there?  Is it ever even mentioned?  Does it just exist?  Do they just live it with you?  Yes, my parents and friend will listen if I need them to.  But they usually just already know ’cause they’re already living it with me.

How to do K twice?

May 5, 2008 By Michele 2 Comments

So.

Logan is going to be repeating Kindergarten. It is the right move for him, and have no problems with this.  And he (and his brother) are adjusting well to that idea.  He is simply delayed and “younger” due to his heart condition.

Here’s my dilemma.  The STUFF.  For example, do I use this year or next as his K picture?   I have a cute schoolhouse photo frame for each of the boys with a slot for each grade through senior.  Which one do I use?

Or the projects?  Which ones to keep.

I know this sounds like a stupid problem to have.  But a problem nonetheless.

Opinions?  Which is his “Official Kindergarten” year?  Anyone gone through this one before?

Cross Posted at Special Needs Parent

Tired of the Fight

March 18, 2008 By Michele 3 Comments

Cross-Posted at Special Needs Parent as well

Do you ever just get really really tired? Tired of it all? Tired of the drama… Tired of being the “responsible adult…” or the “responsible parent…” Tired of dealing with all the kids issues, and having to be on top of it all, and realizing at a certain point…

My God will it never end?

And it won’t.

And I’m feeling it today.

So, my youngest son, Logan (he would be the one with the heart issues) is going to be held back in Kindergarten next year. He’s just not keeping up.

Bad news – He’s being held back.

Good news – He’s being held back.

On the one hand – developmentally speaking – he’s very very young. That’s just because of his heart issues… Smart as a whip – but more like a 4 year old (physically and mentally) than a 5 year old. Smallest in his class. As his teacher put it, there are no learning issues, there are no psychological or behavioral issues. He, quite simply, needs the gift of time.

On the other hand – he’s made friends. And now the kids, in school, will be three years apart instead of two.

And this was the one that I thought we’d have no school problems with – at least until it was time for his surgery.

I’m just…

I don’t know. I’m sad. I’m sad that he’s got extra issues too.

I’m sad – and actually crying – this is endless. Day after day. One thing after another. Constant issues. If it’s not their emotional issues, it’s behavioral, or learning, or too slow, or too young, or too small, or “not accomplishing his potential.” I’m so so tired.

I’m just sick of it all. Please excuse the rant. It might be a sleep factor – Logan’s been getting into bed with us -favorite position: on my head. And the wind kicked up around here, which wakes me with slamming things outside, and I’m not getting good sleep. I usually don’t physically cry about this stuff – I just do what needs to be done. Period. That’s my function as their mother, to make sure they have the best care, for the best reasons, with the best results, for their best future, whatever that looks like individually for each of them. I usually don’t get emotional about it. So. Thank you for listening and letting me rant.

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Wife. Mother. Daughter. Business owner. Please send coffee.

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