Wednesday, September 30, 2009

Food For Thought

Last week I took M to a new DAN! practice I had heard great things about. We have been patients of Thoughtful House for nearly two years now and I felt that it was time for a little different perspective as well as making the switch from a practice that was back on the mother ship to one that is local. I have great respect for the practitioners and work done at Thoughtful House, but unfortunately after following protocol there, we have not seen much, if any, change in our little guy.

I really liked the doctor I met with yesterday. I think the other half--who was notoriously skeptical of some of the suggestions at Thoughtful House--would have liked him too. It was sort of like Thoughtful House-light, which is probably good for us.

While he had many of the same beliefs as our old doctor, he also had one that sort of left speechless and with a lot to think about. At the end of our 90-minute appointment I finally got around to the current stage of Miles' developmental history; the part where we have an agitated, sometimes aggressive child on our hands. The doctor asked me what my gut told me is the reason for these new traits. I told him I believed it was his displeasure in a not-right-for-him school setting, to which he immediately replied, 'I put a lot of stock in parents' gut feelings. Take him out of school for three weeks and see what happens.'

WHAT?? Take him out? But...then that means that I have to deal with my lack of patience for starters. Or my inability to teach anyone how to do anything that doesn't come easily to them. I am acutely aware of my parental shortcomings and have overcompensated in areas of research and networking to somewhat make up for them. I'll be honest: I don't entirely know how to be with M 24/7 for longer than a week and I also know how very important things like speech and occupational therapy are for him. My first thoughts on this suggestion were that it could never happen.

But after giving it some thought, I think it could happen. And I think it could be very telling. However, I think since it's taken us 18 months to go down this hill, it is certainly not going to only take three weeks to go back up it. But if he's happier by the end of it when we check back in with this doctor, we may very well have ourselves a clearer answer of whether or not M's school is the root of his problems.

I have decided that in order to make this experiment a success, I need to set up an intensive private occupational and speech therapy schedule; like maybe 2-3 hours worth, three days a week. M always does well with his private therapists. They get him completely and the work seems like play to him. I think this is the only way we can take him out of a school setting without him losing skills and melting down even more.

I still have to get some other ducks in a row before this can happen. I have to figure out the best approach with the school district, and I need to figure out what three or four weeks make the most sense. The pediatrician flat out told me he would write me a letter saying that M was sick. Wow. This guy is serious!

I guess the biggest thing that concerns me is my fear that I am wrong about this school thing. What if I have used this as my go-to excuse for this regression when really I am just unable to see that this is who M was bound to become and I should accept it and move on? This is scary to me as I really believe that a happier child lies within the one I see before me.

I would love your thoughts on this proposed experiment, especially from you readers who have children with special needs.

Monday, September 28, 2009

Thank You & Sleep

I truly appreciate all of the love and support I got on the blog and off...means more to me than you could know.

I thought about updating you all on Saturday after a much-needed, too-long-in-the-making, really freaking refreshing night of sleep. But then, I was afraid to jinx said good night of sleep and decided not to mention it.
Well, apparently the inner workings of my brain have some connection to the jinx gods and told them what I'd been thinking, so the bastards went and screwed up our sleep for the next two nights anyway. Sigh...

M has NOT been sleeping for over a week now. We have no idea what is going on with him. I tried to blame it on starting a new probiotic, but I don't think that is really it. He wakes up every single night (except for that amazing Friday) and comes into our room. After that, it is as though he has restless leg syndrome. I can feel his leg twitch-twitch-twitching next to mine when he is actually laying sort of still. And the rest of the time is spent shifting, sleeping upside down and sideways. Oh, and let's not forget the crying and occasional kicks and jabs at our faces. It's clearly terrible for him, and in turn, terrible for us. We're exhausted and don't know what to do to fix the problem.

Sleep was always our check mark in the positive column. Kids with autism are notoriously poor sleepers, but not our M. Our M fell asleep with little to do and stayed asleep until we woke him for school. On weekends, he could sleep until 9 or 10 am. So this new wrench in his schedule has really thrown us for a loop. I have tried melatonin, which does seem to help him with the actual falling asleep part, but certainly doesn't help with keeping him that way.

Do any of you readers have any advice for us? Have any of you in a similar position experienced this sudden HUGE change in behavior and sleep patterns in your autistic child? M is six and I am wondering if this is some sort of hormonal or growth issue. In other words, I am hoping very much that this is just a phase and will pass quickly.

Pardon me...I am about to fall asleep on my keyboard. Time to set the ol' alarm and attempt to catch a few zzz's before I pick M up from school...

Wednesday, September 23, 2009


Dear God,

I know we don't talk as much as we used to. I mean, there's that whole me not attending a church thing and questioning organized groups who follow you.
But I really could use your help right now. I am really struggling. My whole family is really struggling. My little guy's emotions are all over the map and my 60:40 rate in favor of successful outings has taken a drastic nosedive to 70:30 NOT in my favor. The rage I feel over his rage is growing to match; a thing I feel enormous guilt over and realize is the absolute worst thing a Mom can offer her sweet child in his time of needing me most. But how does one stop reacting when each and every day...about five or more times a day...she is pinched to the point of bruising; hit, kicked, and addressed with a clenched jaw and a sound like she is about to be attacked? He may only be six, and he may have low muscle tone, but he is strong and he can hurt. And the worst part? When I reread what I have written here, I feel as though I am describing to you someone other than my child. Someone other than the old soul of a boy I know has the capability of being the most endearing, most beautifully enchanting child...the child who you may not understand, but who haunts you and makes you want to understand.

God, I am scared. I feel desperate to fix this, and yet I am not able. I want to blame it on how very unhappy I know he is in his school placement, and yet I am also scared at the possibility that it is bigger than that. That this is his new normal. Have we entered the point of no return? Is he choosing to more autistic and in his world because it is easier than being a part of ours?

And what is worse, God, is that I--the woman who bore this beautiful, confusing boy--am also the one who instills fear in him. I am the one who has started to not tolerate the 20-minute hysterical meltdown when it is not the movie he wants. The one who will put him in his room immediately because I have no more patience for him reaching for his little brother's neck...even when his little brother sometimes quite knowingly provokes him.
I am the one who yells and cries at him, and then lays next to him because he needs me to make him feel safe as he tries to quiet his body long enough to fall asleep.

If your own mother cannot accept your faults, then who can? Oh, the guilt is almost too much for me to bear.

Please, please, God. If you are out there and you are listening, can you help us? It is bad and I need help.
I cannot do this alone.



Thursday, September 17, 2009

I May Be Biased, But I Think It's Pretty Freaking Cute!

B is absolutely LOVING his new nursery school. The poor kid begged to go to school all summer and now he finally has a place to call his own after spending his entire 2.5 years being schlepped to and from M's schools and places for therapy. He attends preschool two days a week for 2.5 hours each time at this fabulous, old-school place right on the beach. It's absolutely perfect for him.

Today, he did a language arts exercise with one of his teachers, Amanda, who he has nicknamed 'Panda.'

Here is what he responded to the question 'What makes you feel...'

Happy? Doing Papers makes me happy! (Papers, he explained to me, was what he called doing this particular activity)

Sad? When I fall down!

Silly? My mouth!

Excited? My Mommy & Daddy go to parties! (I should explain here that we don't really go to many parties...we have been doing lots of pretend play where we act like we are having a birthday party)

Confused? Um...the grass!

Disappointed? Um...that truck right there!

Bored? Um...that....the papers!

Angry? When I falled and screamed at Mommy!

Loved? My Mommy! (Bless you, my sweet boy!)

Scared? Monsters! RAWWR!!

Damn, he's cute...

Sunday, September 13, 2009

Thankful Sunday (Because It's Cheaper Than Therapy!)

Today I am thankful for my village.
Have you read 'The Red Tent?' If not, you should.
We weren't necessarily meant to do all of this parenting alone, you know!

I feel so blessed to have made several amazing friends here...not just the kind that you drink wine with over a good bitch session, but the kind that you drink and bitch with over way more hours than you'd normally spend at someone else's house; hours during which you're perfectly comfortable to help yourself, rummage through their kitchen in search of the perfect serving dish, and have your children run around like banshees while your rear is planted firmly in their kitchen chair-because you don't have to worry that your children are going to dart into a street or take off with a stranger.

I was fortunate enough to have two such days this week and it was fantastic. Both families are quite different; one, a family whose son also has autism, and the other a family with three typical children who all have this fabulous gift of accepting M and all his quirks and still try to include him over and over again. I love that these friends don't care if their homes are spotless when I come over...or that they forgot to cook a vegetable to go with the chicken. I love that they take the initiative to put a borrowed t-shirt on B who arrived wrongly dressed for the hot weather in a long-sleeved shirt and jeans. I love that when M could not handle the movie I suggested we see, they did not feel short changed (even though I did!) and suggested instead we head back to their house to relax. I love that they told me how relaxed they, too, feel just hanging out with us.

It really does take a village. Let us not forget this and always cherish the good friends we have in our lives.

What do you love about your village?

Wednesday, September 9, 2009

Things I Am Currently Stressing Over

Bet you can't wait to hear, huh? Bet you can guess what they are, huh?
(Alright...anyone reading the above with an old-timey, Jimmy Stewartish voice, while mimicking tipping their cigar ashes to the floor? No?? Huh...)

Money: It is freaking expensive to live here. The other half makes a great salary by all accounts and yet we still worry. Ridiculous.

The Real Estate Market: This one ties in nicely with the first. Let it be said that Mama Deb has finally accepted her fate and realizes there will not be a chance to sell--and subsequently move out of--this house until, AT MINIMUM, Spring of 2010. The final realization came last week after learning that a comparable house to ours came absolutely no where near appraising. Damn. Damn. Damn.

Anyone care to take dibs on which one is next....

SCHOOL! Yep, you guessed it. Still stressing about M's school. He did fine during summer school (different teacher, one of the same aides, mostly different kids, different elementary school...hmmm?), but has already shown great displeasure with going to class each day. We don't struggle every single day, but we're only about eight days in and I'd say five of those have been really tough. But what is tougher is hearing that he is very agitated, showing a ton of self-stimulatory behaviors, or easily angered during the school day. And at night we have been dealing with a little guy whose emotions are so out of control that he is starting to show a bit of rage towards mostly me and his little brother. It is both scary, upsetting, and enough to make a person really pissed off. There is only so much being pinched or kicked a Mom can take :(

And finally...

The grand combination of money AND school! Because I have just received a delightful little note from the district saying that though they are pleased to see M back in school this year, they need me to understand that they will not be able to continue serving him without me signing the latest education plan. (These are those IEP things I have previously mentioned. It is not recommended that a parent sign these if they are not in agreement with them. Because these plans have outlined an education that is to be granted in a public elementary school as opposed to the private autism school M needs to be in, I have not signed. I did this fully knowing that we'd come to this point eventually where one of us would be forced to take that legal we go!) So I am scrambling for advice from some specialists whose opinions I value and I imagine our next move will be to hire an attorney or an advocate. Can I curse here? Because I really want to yell out, 'FUCK.' There. That's better. Thanks.

That is all!

Sunday, September 6, 2009

Hopeful Parents!

I'm contributing over here today.

Come on over, y'all!

Thursday, September 3, 2009

Highs...And Lows

I have been M.I.A. (no, not like the rapper) It's not for lack of subject matter, but perhaps more for lack of energy to write it all down and read it back to myself.
Since arriving home from our 13-day excursion, we have had some good days...and we have had some very bad days. If I can sit my impatient rear down long enough without a certain small person asking me to read one of his current three favorite books yet again, I'll lay it all out for you.

In the meantime, hope all of you out there in blog-reading world are fine and dandy!