Grieving for me

I'm tired. I'm tired of educating the educators. I'm tired of counseling the family. I'm tired of mediating and I'm tired of being the balance that holds up all sides of every problem. I'm tired of guiding the autistic teenager through crises while I'm handling these crises themselves. I'm tired of being in charge of seeking support so that I don't have to be so tired.

I'm tired of dealing with paperwork upon paperwork when a face to face meeting is called for. I'm tired of being ignored in meetings, listening to the implication that we're poor parents for the decisions we've made. I'm tired of handling Amigo's stress levels. He's entitled to be stressed -- it's all about him, after all -- but does it have to come down to me, the mom, the one with the counseling and mediation training, every single time?

When La Petite's favorite pet died in her arms, I was supporting her and handling the aftermath -- and preparing Amigo for this event. I worked directly with him, even as daughter was sobbing, using my I-messages and explanations at his cognitive and emotional level. I drove the car with tears in my eyes. I made decisions for getting the sweet little animal home for burial, cut up an old blanket and wrapped him up, carefully placed him in the trunk of the car, and got the beside-herself college student packed and in the car to come home.

When Amigo was nervous about taking a weeklong short course at the school for the blind, I talked him through the preparations: packing, discussing expectations, reviewing coping skills, and more. Then we got hit with a major blizzard on the trip to drop off the daughter at her apartment and then take him to the school. His anxiety was already up, and I could not deal with it directly because I had to focus on driving safely. The storm got worse as we got closer to our destination, and his anxiety rose, too. I had to make driving decisions, so Amigo's emotional needs ended up ignored. And the result - well, it wasn't pretty.

Before judgemental parents jump to conclusions, remember that Autism Works Differently. If I simply announce I'm done, no more assistance from The Mama, there will be a major autistic meltdown as the teen reaches his breaking point. These meltdowns are beyond the comprehension of a Perfect Parent or Sanctimommy. An autistic meltdown in the car during either of the above incidents would have made it even worse.

And before anyone blames my husband, stop. He is more than an equal partner in these dilemmas. I happen to have more training and skills in -- well, see paragraph one for details.

Yes, we take the kid and ourselves to professional counseling. No, the school district doesn't provide any help. "High functioning" is as much a curse as a blessing in this way. And before you bash me for bashing the district, I'll remind you that I work there. I teach in the same district that educates my children.

I love my children. Amigo is high maintenance, but he's generous and smart and funny and often the light of my life.

I'm just tired. Very, very tired.

Comments

[Ora]

I can sympathize. I'm sending you loads of big hugs. Sometimes I feel exactly the same way.

[Kathy S.]

You're right -- it does add up and you are tired. So, to take care of others we do need to take care of ourselves. I realize it's VERY hard to carve out time to do this but can you find a bit of space? You need and deserve it and it will make you a better parent. Sometimes it's as simple as a walk around the block, or a warm bath, or telling your kids that you're in time out and you need it so please do the best they can for "x" number of minutes. I don't know what will work for you and your household but I bet you do if you stop and think about it. Dealing with family (even when you love them bunches!) is tiring. I wish you the best and hope that you can find a little bit of a mental break.

[the planet of janet]

sometimes, you have to take care of YOU, too.

[Ilona]

Is there a light at the end of this tunnel? Is there a time you can look forward to, saying, "THEN it will start to ease up"? That's what I'm hoping for you. In the meantime, hugs and peace. You're doing so well, but, goodness, wouldn't you just like to go to bed till it's all done?

[Daisy]

Go to bed 'till it's over -- I'd like that a lot! the light at the end of the tunnel (if it's not an oncoming train) might be the end of school in June, or it might be Amigo's graduation two years from now. Graduation, unfortunately, might mean more issues. Sigh.

[Ali T]

Ahhhh Daisy. I feel for you. The endless demands are something I relate to. They. just. wear. you. down. At least I have the promise of an end in 5 years, and that it will get easier in 2.

Taking a break sounds idyllic, but it's not easily done.

If being heard helps, well,we're hearing you!

[MJ]

Daisy, YOU are AWESOME.

I've spent a lot of years working with people with all kinds of disabilities--it's my passion in life--but I get to go home at night and take a break.

I admire your ability to deal with all of the frustrations (more the dealing with "normal" people than anything else). I'd like to throttle the teachers giving you flak about YOUR SON.