“Hey, Laura,” said Eric, Matthew’s primary care-giver at Camphill, California,”if it’s convenient for you, I might need a little vacation.”

Since Eric is the second most patient person in the world (I’m number one) his request could only mean one thing. Matthew was having a setback that made him very hard to live with.

Matthew with my brother, Scott

Matthew with my brother, Scott

Setbacks are heartbreaking for parents of children with special need. We’re transformed from proactive optimist to frustrated cynic in moments.

“I wonder if he’d be any different if we’d done nothing at all,” my husband once said to me after we determined that a treatment we tried yielded no noticeable results.

After having Matthew home for a few days, it has become clear to me that he must need a medication adjustment. He started taking Risperadone about 4 months ago, and it was a miracle drug. Almost overnight, her became less volatile, less obsessive and more reasonable. He was happy. He gained a lot of weight, a common side effect of the drug as it stimulates appetite, but I told myself that I’d rather have him chubby and happy than thin and miserable.

The last few times Matthew was home to visit, he was less happy and reasonable, and this time, I’ve spent a good chunk of time (including a two hour car ride) explaining why he should own a gas powered hedge trimmer, “the Bush Whacker” model, to be specific.

Matthew has been home since Sunday, and I must say, today has been a pretty good day compared to the others. But the thing about good days (during a pattern of bad days) is that they make you wonder.

Does he really need a change in medication? Have I been over reacting?

Is it 5pm yet?

Then at 9pm, just when Matthew usually settles down for the night, her asked me to make him some peanut butter cookies, I said no, and he flew off the handle in a big way. I almost called 911.

After a very tough hour (even talking about what happened upsets me, so I won’t) I convinced him to take a bath and then go to bed.

Tomorrow is another day.

One thing I know for sure. It is not easy to be Matthew.

“Nobody’s perfect!” he’s fond of saying.

That goes for parents, too.

Read more about Matthew HERE.


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