My 7yr old with special needs.

L.S. He has a developmental delay and he is disabled.
He has Disruptive Behavioral Disorder/Oppositional Defiance Disorder (I realize they are 2 different things... you're usually first diagnosed with DBD, and it "graduates" to ODD... he's been formally diagnosed with DBD, and the psychiatrist said "He probably could be diagnosed with ODD, since they've seen it at his school"  however, it's not "recorded" yet.
He also has really bad anxiety.  About everything.  He's never been away from one of us, except for school, and that doesn't really count, since he won't go unless I'm there at school with him.  When he first started there, I HAD to be in the room with him.  Now, he just thinks that I'm in the "observation" room, which is a small room adjacent to his classroom with a double mirror that I can look thorough to see him, but he can't see me.  For a while, I did stay in that room... then I got kinda tired of sitting in the dark. Plus, the school auction came around, and it's really been fun for me to participate (whole nother post)
L.S. is in therapy @ Children's hospital once a week, although, as of last week, I think we may end up switching to a different place, to get more, better services.  Don't get me wrong, Children's is great...but they don't think that he's getting enough help, and they've said that there are services that he needs, that they don't have.  I respect that, but it took us SO long to get him into Children's...and we're just supposed to accept "ok, it's time to go."  I thought that he'd be there for a while... especially since his therapist and PCIT coach said that after PCIT, she'd be his therapist each week if we wanted.  I guess I'm just confused as to what's going on.  This started, because we wanted to talk to someone about medication for his issues.  The doc we saw told us about what he could use, but basically said that she wouldn't prescribe now, that he should try other things first.  Ok, I get it...  I'm sure there are other therapies to try... there are ALWAYS other therapies. You want us to try putting holy water on his head maybe?  Or, hey, I know...let's try duct taping him up to keep him from punching me.  I get that he should try something else for his anxiety...but what about the meantime?
L.S. also has sleep apnea.  He stops breathing during his sleep.  They measured it during a sleep study once, and they averaged it, saying that he stops breathing 11.4 times per hour.  This causes you to 'wake' from REM sleep, thus, you don't really get GOOD sleep.  They think that it's POSSIBLE that this waking up could be causing some of his agression/attention/anxiety issues.  Ok...I'm sure it is possible.  So now we have a consult with the Otolaryngology (sp?) to see about a adenoid & tonsil removal...  surgery, for my 5yr old.  I realize that it's a normal procedure, and when I was growing up, it seems that EVERYONE got their tonsils out... but looking at all of the information on the internet... if too much tissue is removed, it could change the sound of their voice, making them sound funny... if too little is taken, it could actually regrow, causing all the pain & suffering he went through during/after surgery, well, pointless.  They've also given him a CPAP machine (continuous positive airway pressure) which, for those that don't know, is basically like a backwards vacuum pumping air into your face constantly.  This forces you to breathe when you stop.  But... getting a 5yr old to wear it?  L.S.(big) has one, and it was so difficult to get him to wear it because of how uncomfortable it is.  At any rate, je's been sick lately, so we haven't even tried with the mask since we got it 2 weeks ago.  It seems just as he's starting to get better, he get's worse again.

So I said all this, talking about the therapies that they want us to try before medication.  Again, I understand the point they're making, but I really think that no one sees just how difficult of a child he is, difficult it is to deal with his issues...  It's not like we didn't struggle with the idea of medication.  We've gone through several years of his issues, constantly telling ourselves that medication wasn't an option.  Now, having reached the end of our rope, we're wondering what's left besides meds.  I do think that the CPAP and the CBT (cognitive behavioral therapy) for his anxiety will be helpful...but I also had high hopes for the PCIT, which, as of now, hasn't really changed anything.   But to be honest, if we don't keep trying, I don't know what's left, and I'm afraid that it'll end really badly.

L.S.' school, has been a wonderful wealth of resource, and I'm so glad that we found it when we did.  One of the main reasons why he was never in childcare, is that neither Ray nor I have worked since he was born (another post... I promise) and as such, we never qualified for childcare assistance.  We couldn't afford to pay out of pocket, so it just never worked.  I recently found out that since L.S. has a developmental delay & disabilities, and now, an IEP, he actually would have qualified for state 'school' at the age of 3.  I REALLY think that a LOT would be different, if we had known that.  So now, I plan on making sure that other parents of young children, especially those that show any signs of special needs, get that information.  I can only imagine and daydream about how different Schwoom would be had we had those interventions early on.  I also put a LOT of blame on his pediatrician at the time... When we first went to her about his issues, he was just over 3, and had recently stopped breastfeeding.   We'd explained to her how he acted, and what we went through.  Her response was that he "was a spirited child" and that we should say YES to everything we could, and "choose our battles"  that if it was about safety, we should stand firm, otherwise, give in.  She also went on to tell us that she had a child that was (if I remember correctly) 7 or 8 and she said that her child is the same way.  In retrospect, it should have given us a BIG clue, and eventually it did, but nearly a year later...which, in the end, was VERY unfortunate.  Instead, we followed her directions, read the books she suggested "the spirited child" and so forth...giving in to his whims, requests and so on.  Eventually, we got to talking to others about his issues, and realized that something WAS wrong, and the approach she had us using was not only not helping, but in fact, as we've seen in hindsight, really made things much worse.  We began seeing a general doctor for both mine and L.S. s health, and decided to switch Schwoom there.  We talked to him about his issues, and he said that we ought to see someone at Children's behavioral & psych clinic. So we began the wait.  7 months later, in September, we had our first meeting with what would end up being his psychiatrist for several months.  He saw her, alone, once a week, for "play" time... this consisted of them talking and playing about what "should" happen.  I understand the premise behind it, but still don't think that it had any impact on anything.  I think it was actually rather pointless.  It's not like it changed anything, and he already knew that hitting, biting, kicking, throwing, headbutting and so on was wrong... it's getting him to stop that's the problem.
Fast forwarding... he saw her for over a half a year, when we decided that it just wasn't working out well... and at that time, we found a 'school' that would give us a scholarship, we'd only have to pay $100/month.  So we went for it.  (That is again, another blog post)  That school turned out to be the worst thing we could have done, and caused him much more anxiety that we'd ever thought it could.
So now, he sees a therapist, and we're doing the PCIT, which, while it's not making a huge difference now, I still have hopes that, if nothing else, the teachings will be helpful eventually.

So now, I spend my days at his school with him, working on the school's auction, which in it's own right, is a sanity saver.