Sparks and Butterflies...

But aside from that, she's still completely normal

Paperwork Schmaperwork

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Red tape sucks. Bureaucracy sucks. Add special needs, parents, and other acronyms like IEP and AB3632 to the mix, and it’s frankly mind boggling. Perturbing. Chap burning.

Joseph’s therapist came to see Poe and I. At our house. Sans Joseph. May I repeat – HOUSE CALL. Which is exactly what she should have done. There was some miscommunication in terms of Joseph’s care – instructions that left Poe and I’s cartoon characters with little “WTF?!” over our heads. She needed to clean up the mess. I understand everything much better now. Let me correct that statement. I knew EXACTLY what was going on, and I just had it confirmed.

M.O.N.E.Y. Speaks volumes when comparing, “Of course we’ll get you in for a consult” and, “We no longer meet the standard of care for this patient.”

Standard of care my ass.

BUT. Once I usher along the people who need to take care of proper paperwork, we’ll be all set, I think. This is a good thing. Advocating works again.

This therapist doesn’t usually deal with me. She usually deals with Poe on a weekly basis. She got to be exposed to mama bear. The mama bear who knows her paperwork. It was a good thing. Most of the families she works with don’t have mama bears on the cubs’ side – so she was a little taken aback by me. On the one hand, I’m glad she was honest with me, and transparent. On the other hand, what a sad, sad statement on society that me, fighting for rights, privileges, and solid medical help for her son’s mental health is an ANOMALY. My advocating for my son is ABNORMAL.

I can see an uneducated or ignorant mother having issues communicating concerns. But “Help my son or I’ll keep coming at you until you do” is pretty much the same in any vernacular. So, me saying, “According to Joseph’s AB3632 this, this, and this service is required of you by the state of California. It has been properly documented by the Department of Mental Health. It has been cataloged in his IEP. When can we schedule it? Oh, really? Here call this, this, and this person, and then call me back. And if you don’t, I WILL call YOU.” Is the EXACT SAME THING AS “My son needs help, please help him.” SO. The fact that most of the mothers in this particular county do not say that? Floors me. So it’s not a lack of education. It’s a lack of caring. That scares me. I haven’t even gone into all of Joseph’s issues. But you know a lot of them. And a child going through that without a parent fighting for him? That crushes me. Poe told me today that when he goes in for therapy for Joseph, he’s the only parent there. In other words, getting out of the car, into the building, finding the receptionist, checking in, and then waiting for doctor to come get him. Children. Mental health care. ALONE.

I think I’m being judgmental. But I can’t help it. God knows I’m not the most maternal of mothers out there. I’m likely to kick you in the ass if you’re in trouble – not hug you. I’ll probably tell you to shut up so I can take your temperature properly. And you’ll drink those darn fluids when you’re sick if I have to plug your nose to get you to do it. Poe is the same way. But by God those kids know they’re loved (whether they like it or not), have proper clothes, supervision, shelter, education, and medical care. That includes staying with them unless they are properly in the care of another adult. NOT the receptionist. That includes making sure they get the care (and ongoing aftercare) they deserve to grow into functional, vibrant adults. That includes talking to their therapist and making sure they’re on track, and if not the next course of action. That includes taking steps to ensure that something happens if it’s not.

Ugh. Appears I hit a bit of a rant today. But when I find out that by being a proactive parent with my kids’ MEDICAL PROFESSIONAL I’m an oddity? That makes me angry on all those other kids’ behalf.

Thank You for Your Support

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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

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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.

Perspective

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Logans Missing Front Tooth

Logan's Missing Front Tooth

For all my recent cynical ramblings – nothing’s cuter than a 6 year old with a missing front tooth.

When Children Are Ill

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Perhaps you’ve noticed that I dropped out of site for like, a week.  And if you didn’t – well that’s just a blow to the ego so keep it to yourself mmmkay?

I was sick a couple weeks back.  And just as I was coming out of my fog and getting caught up with stuff at home and stuff at work, Logan became ill.  Very ill.  Picture 104 degree fever spikes, two doctor’s visits (plus copays), two prescriptions (plus copays), and lots of cold medicine and ibuprofen.  For a week.  Out of school.  The poor kid.  He had the flu, plus an eye infection, plus an ear infection.  The scary thing is – he showed NO symptoms until he spiked a fever.  No red eyes.  No stuffy nose.  No cough.  No tugging on the ear – or even any pain since he’s old enough to tell me.

A 104 fever at midnight is a scary proposition for any parent.  Couple that with a congenital heart defect.  And then couple that with the ONLY admonition the doctors have ever given you regarding said heart, “The only thing we have to worry about right now is infection.  We HAVE to stop the infection before it gets to his heart.”

So, I’ve been caring for him, worried out of my mind, and now that he’s better, I barely remember the last week.

The worry a parent feels – that deep down is this more than I think it is worry – is so very draining.  It sucks the life out of you.  If you could take their place, you would.  If you could make it go away you would.  You’re willing to become a horrible person in your kid’s eyes so you can make them better.  When they look at you with hatred as they cough down the foul medicine, or stare at you with wonder when you hold them down for a shot, a little piece of you dies inside.  Because they just don’t understand that you’re doing what needs to be done to make them better, whole, well.

You can only hope that they forgive you with their wide big hearts, and understand when they have children of their own.

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