"These happy golden years are passing by, these happy golden years." Laura Ingalls Wilder

Wednesday, June 03, 2009


... my youngest son has OCD (and is driving me nuts). I remember reading years ago that children with Down syndrome like to have order and routine in their day to day lives. Order and routine I can handle ... but OCD is taking over my son's (and my) life.

It started with a new blanket I purchased for his bed. It's very, very soft. He began taking off his bedspread and flinging it onto my bedroom floor every day after school so he could run his hands over the soft nap of said blanket. Then there's the dvd/cds that he strategically places on top of said blanket. A Spiderman ball has to be placed just so at bedtime on the floor, a night light, a white noise fan, the window and shade down until I sneak in at night to give him some fresh air. His toothbrush and paste placed just so, socks on feet at all times (OK, I admit, I have this same fetish), water cup on coaster placed just so at night, and his 'boom' (plastic toy shovel) that goes everywhere with him inside the house. He sleeps with it under his pillow at night (one hand on it at all times) ... Oh, and if you happen to laugh around him, it gives him a 'pain in the head or eye' ... On Monday I switched his bedroom furniture around because he dances in circles to music and I'm afraid he will literally wear a hole in the carpet. Boy did I get an earful for this maneuver. His obsessive compulsive disorder is getting worse as he gets older. I think it's time to attend OCD anonymous and get into a 12 step program.


Constance said...

Wish I had something useful to say but I got nuthin'!

I thought of you on Sunday when I read about a young man with Down's Syndrome in the Dallas Morning News who had just earned his Eagle Scout award. It was a beautiful story of how this young man has touched so many people's lives!

Anonymous said...

I just happened to find your blog today and I have OCD myself. I am sorry that your son has it. The OCFoundation.org has a ton of information and you can find therapists in your area that specialize in the behavior therapy for ocd. A great book that I gave my parents to read after I was diagnosed was Tormenting Thoughts and Secret Rituals by Ian Osborn-it really explained what I was going through very well. OCD is such an awful condition and I know it is frustrating for you to see your son deal with it too, and it is frustrating for family and friends to have to put up with as well.

I did have to take medication and was on it for a year (Luvox) WHILE I was in behavior therapy once a week. The medicine helped by reducing the ocd enough that I could learn the therapy and apply it. Of course, I was 29 when I went on the medicine, and you may feel differently since your son is a child.

I'm sorry if this seems like a book but I just wanted to say that ocd is painful. The anxiety he feels is very real and scary (as unresonable as it seems to anyone who doesn't have ocd).

You and your son will be in my thoughts and prayers. I hope he is able to find relief soon


Mrs. Darling said...

Tink has it too and Peter to a small degree. Tink only recently quit praying that she "wouldnt poop or pee" in bed. She added that to her prayer at 2 years old and now at 12 has finally been able to leave that part out. She has a part she says that she made up and then theres a part that Im suppose to say and then she says more and then I say Amen!

At night when she gives goodnight kisses I have to kiss her on both cheeks three times. Then she goes to Dad and leans toward him with the right cheek and he has to kiss her goodnight. She will come back and do this four or five times - BUT - on all the other times I have to kiss her on just the left cheek because I will erase Dads kiss and then she will have to start the process over again.

Its so frustrating but if you make her go to bed she will but then she will get up even knowing she will be in trouble and she will go right back to the ritual.

Theres gobs of things like that that are too complicated to explain and far too detailed.

Peter does things like saying something six times or three times in a row whatever he ahs determined is needed. If you interrupt him and tell him to stop he says he cant and that he just has to finish the count. His things are little things like that but still OCD.

I have no answers only sympathy.

Maria Stahl said...

So sorry. :o(

Love you, and praying. More.

Terry said...

aw mrs. mac!
i have a cousin with the same thing.
he has downs syndrome too and he really does put a lot of sloppy people to shame, myself included.
everything has to be at ninety degree angles and everything must be in the right place..

ha!... the little teenaged gift gave you an ear full did he!
i guess the guy knows exactly what he wants!
he will grow up to be a perfect gentleman mrs. mac.
you don't need any 12 step program.
you are a wonderful mother!!
by the way when my little cousin and his older sister who has MD, made a surprise 25th anniversary party for their mom and dad all on their own, all of the relatives and friends were just astounded!
and the funny thing was everybody was asking, "who IS this handsome young fellow who is making sure that everyone was sat in their proper seat and who had such a sweet enduring smile"?
that nathan is a good kid!!..same as our boy cousin..........love terry

Mrs. Mac said...

Thank you Karen for the book and group information. I'll check into both. Nathan has not been formally diagnosed with OCD ... but he has so many overlapping 'oddities' that share symptoms of different syndromes that it's hard to tell where one starts and one stops.

Last year he got stung by a bee up the shorts and he replayed the pain over and over in his head for days.

Today he wanted to wear winter gloves on his hands to play basketball. I thought he didn't need them (his hands were badly chapped this past winter so we let him wear them a lot) ... but it's nearly summer ... so I said no. He proceeded to play with some wood chips hubby had just made yesterday ... and got a handful of splinters ... that lead to an obsession of splinter pain of the microscopic level. On and on it goes at time. I'm glad he's going to a special ed day camp this summer or I might go crazy being his mom.

Terry ... you are such an encouraging person ... always finding something good about a situation ...

Mrs. D. I have read about some of Tinks 'quirks' before so I know you have sympathy.

Iowa Mom ... more prayers are always welcome.

About the only thing that makes him snap out of his funky mood is mentioning the 'little red headed girlfriend' of his. :)

Pat said...

Feel that? That was my hand on your shoulder, giving you a hug.

Diane said...

I have no experience or advice. I do know how to pray and I am doing that at every remembrance of you and Nathan. Our God is able and will supply ALL of our needs. I know He can meet Nathan's needs as well.

Much love and many hugs..........


Crown of Beauty said...

OH dear Mrs. Mac... my heart goes out to you and NAthan.

Will surely be praying for you...

Thanks for sharing.

Trish said...

Oh, Mrs. Mac...I suffered from OCD.
Counting words on billboards, commercials or whatever...Zoloft helps control my counting and my OCD.
Praying for Nathan and YOU. The P.A. that I see, explained to me that my counting, was my bodies way of naturally ridding itself of anxiety.

Mrs. Mac said...

Trish ... I'm glad you got some help. Yesterday at the drs appt for Nathan's 13 year physical ... she mentioned maybe by the age of 16 to put him on a med.

You count ... I garden ... to get rid of stress.


Felisol said...

Dear Mrs. Mac,
What other concern compulsory, may be a way of coping with new changes and anxiety.
Pills may not always be that right answer.
How, when and why are questions that might be asked and tried answered.
The older Nathan gets, the more he will understand he's not like everybody else, no matter how highly he's loved.
Communication problems is another issue.

We once had a wonderful empathic psychologist where I worked, and several kids with OCD.
He consequently forbade us to take any thing away from our children, unless we gave them a better replacement.
Sometimes we simply could not come up with anything better to offer.
We then let the child keep his "safety blanket."
The same psychologist would always repeat," Talk, talk, talk. You can never talk or explain too much, only to little."

I wish Nathan the best, and a wonderful summer for all of you. From Felisol in the middle of the night.
(Had a bad dream, and than I MUST take a trip to the bathroom and sit some minutes in front of my laptop before going to bed!)

Mrs. Mac said...

The med would only be used for aggression ... not the OCD. Some times from the stress of not verbalizing ... and ... the laughter from other people setting him off/giving him a 'pain in the eye' ... and not knowing when to stop an activity (such as playing tag) ... he can get carried away and aggressive. Most days he's OK ... but as he gets older it may be a concern. His special ed day camp will be incorporating a behavior plan to work with him over the summer. I hope the behavior modification works ... he's a great kid most of the time and I'd hate to put him on a med that would make him tired and not attentive.

Anonymous said...

So many supportive comments already...my little bit is that one of my close friends has a teen son with Down syndrome and OCD. She is a very good mom - like you - and I was so impressed with her openness to medication. I cannot account for why the physician set the age for meds at 16.

I'm so behind at reading your lovely blog! I have thoughts to leave on several posts, but it is late and I need to get to bed.

Glad to hear Nathan has a chance to summer-camp.