B.G.M.

My Mom had surgery for a bowel obstruction F night (now Sun night). Between some dementia already on board, surgery, morphin, anesthesiabeing 79 and lack of ETOH -she is confused. I have had patients in the past who were "fine" until they had a surgery and then never quite pulled it together again afterwards. I am concerned that Mom will not regain the cognitive skills she had. She already had a pretty significant short term memory loss. An example of her now- when asked today at dinner time how her incision was-she said she didn't have one. A tough thing to forget given the amount of pain it can generate.
The thing that is so strange is that her face looks great and she sounds so much like herself most of the time. I didn't fully realize before how much dementia is the robbing of a soul in the presence of an intact and beautiful package.
I hope that I will take her home from the hospital T, and fly to my home by the Bay next w/e (if all goes well physically for her). My gut tells me she will not again return to S. D. to live alone, as she will not be capable. I am sad and I am in the caretaker mode that is making me stay just above the murkiness.

Big girl Ki

I took Ki and we went and had lunch with the other SLP's at Special Hospital. We ate in the fancy dining room. There were white table clothes and a cloth napkin in your glass. Ki scaled into her chair and the waiter helped push her in. She then spontaneously took her napkin out of her glass to put it on her lap. She chatted a bit and pulled a piece of bread from the bread basket. She was perfectly behaved. She didn't even rip off one of her award winning burps! Really she can burp like 300 pound truck driver with no intention to do so. But my point is she is such a joy to spend time with lately. On M and W am's the last couple of weeks we have gone to Whole Paycheck in the morning and we get chocolate milk (her), coffee (me), and a banana muffin (both) and sit on the couch and read books. Such a sweet time. Also, I think it is that 4 is a great age. If most neurotypical (NT) kids were this easy-I would want more -if it weren't for the questionable gene pool and high risk factors Daddy K and I carry. But I digress. I feel a bit sad at times that this baby of mine is growing up. But I am so proud of her and the lovely caring soul she is.

Yeah!

Thanks to Mama L's suggestion I have now become a vendor for speech services for kids 1-3 years through GGRC. I love the little guys. Mama L has almost single handedly marketed and supported my business. At this point we are almost business partners! This will be a great venture.

Good Bye

On Sunday I got a phone call that my former boss at Special Hospital had died. I knew she was sick with cancer and no longer able to work, but I thought she'd be around longer. I guess most people thought she had a while longer. Just that day I had been formulating in my head-yet again-what I would say in the card I would send her.
I would say how much I appreciated her support when I was pregnant with twins and found out one of them was going to die. She told me I needed to do what I needed to do for myself and my job would be there. How I was able to take off 7 months with that pregnancy and the new life of Alex. How she worked with me to try and find a way to keep my job at part-time when it was evident I needed to resign to be with Alex. How she kindly tried to keep my pay level up when I switched to relief staff. How she was a good, fair leader. How she rememded me and others to be the best clinicians we could be. Somehow she managed to wade through the continual requirements for budget cuts and politics and still focus on evidenced-based practice. Her humor was great, her integrity strong. We swapped dog stories all the time- she had Gus I had Sierra. She told me I was different then any speech therapists she'd worked with before-and that was a compliment. I learned from her as a manager, she was my mentor during those years.
So sad am I that I never let her know all my thoughts. A life lesson I feel like I should have already learned-you just can't wait to let people know how and why you value and love them.

Dear K. I wish you much joy where ever you are. I will remember your clinical integrity, fair managerial style, easy-going nature and humor and try to incorporate them into my life in your honor. Thank you-

The Quirky Kids Tribe

Sometimes I wish I could just live in the tribe of Families of Quirky Kids.
When I'm alone with BA in our home, or the home of someone in our tribe, he shines as the beautiful, talented and loving little guy he is. He is appreciated and adored for the wonderful essence that is his.
This is true for all the quirky angels I love and work with in my life.
It is when we go into public, and they do their quirky not-quite-right things that their lovely essence is squashed and submerged below the surface.
How comforting it is to enter and be in the tribe of people who dig below the surface and unearth the angel with-in the quirky kids.

The Unsolicited Advocate

Strange thing. I sent the post re: train store to Iron Door list and special families list serve. Some unknown person of unkown group advocating for individuals felt the need to follow up with the train store. He called them and explained that the kid (s) had disabilities and some other content. He never contacted me, just put out some e-mail that he had called them. Very odd. I purposely didn't put in the e-mail that kid (s) had learning diffs, b/c this was not the issue. They were icy the second we walked in the door with kids. Kids who look "typical". I think I should e-mail him. Seems easier to let it go...mmm..

How I Know I am a Mother

I just brushed my teeth with watermelon-flavored toothpaste.

swimming in public

I'm heading out to take the kids to the pool at an acquaintances house.
Just need to bitch that I hate being my fat self in public in a bathing suit.
Coupled with the whole debate on how best to sheer the ever creeping pubic hair...

re-thinking post

Well I feel I should say that for anyone who has not taken antidepressants-they don't change your personality. I think I have always been easy going and flexible by nature. It is strange to describe ones own nature. I mean what if you have some strange, obscure veiw of yourself?
Anyway, a good description I heard of antidepressants was that they make the low points in life (big or small) not feel as deep. The subject of antidepressants was brought up at a support goup for parents of special needs kids once-80% (atleast) were on them.

ps thanks to friends who read and posted or e-mailed me

Vindictive?

I sent an e-mail about the train store people to over 80 local families. My friend is going to forward it onto other local list-serves she is on.
Don't mess with my babies.

"You always seem so calm"

People tell me that
Well, drugs can do that, make one look calm with a sense of composure.
Actually, lately I don't think I have enough anti-depressants on board.
I don't drink-but I can see why a parent would want to down a glass of wine around the witching hour before dinner.

Anyway-sometimes I feel like the Jeckle and Hyde of mothers.
Alternating between providing warm, supportive, educational interactions and then wanting to rip my kids head off. Really I think people would be shocked to know just how nasty I can sound. mmmm...

Ah but there is always the love of the community

My girlfriend and I decided to meet at the model train store in RWC with our kids. Her son, 4 , and my kids 4 and 6. Both of our boys are ASD type kids with short attention spans and a dear love for trains. A fun way to spend some time...or so we thought.
Immediately after entering the older couple who appear to own it asked, "What do you need." More of an inquisition than customer service. Instantly they were on us "to control" our kids b/c they have "very expenisive things there". At one point The gentleman yelled at little M,"NO running". We were there under 3-5 min. My Mama friend said to him, " You do not need to yell at my son, he hears fine." He retorted, "Oh, so you don't want me to yell at your kids if you can't control them".And in all actuality while they were not being perfect, they were doing well in the store. They even appeared "typical". Which is partly the frustrating part. Next thing we know the man opens his store door and asks us to leave. Our families then stood in front of the store talking. They then came out to ask if we wanted to see a picture of a child who had gotten hurt when she fell into one of there glass cases. (I guess they keep it handy for entertainment sake).I delned the offer. They were very agitated with the fact that we stood infront of the store and came out 2 times to further argue. There discontent with our presence there of course made us want to set up camp for the night.
Of course on the way home I then got to experience the pleasure of a meltdown on the part of my son who wanted to see the trains. Yet again demonstrating for me that I my kid is out of control. Now they did not know our kids were "special". I think if they did they would have stood in front of the door and barred us from entering even initially. "Those type of children should probably stay home locked in their room so they don't break anything or upset anyone." I can just see that as their philosophy.

The thing that really pisses me off is that I tie it back to A and his deficits and it makes me feel sad and lonely. Just like any event where he falls apart in public, which ironically he did not do here. I am angry at them for making the other Mama-or just me-feel badly about our sons. Of course given my prior post and the fact that my husband is out of town-I am not in the best of spots.

How ironic is it that ASD individuals (children and adult) love trains. I will not return to this store ever. And as I told the owner we will let others know of their hospitality.

I just have this feeling that karma will pay-off and one day I'll go to work at the hospital and the patient will be an older man who owns a model train shop who is now unable to speak because of his stroke.

I'm so #@&*^ pissed!

I just got off the phone with Shirley, A's aide from last year at school. She told me the whole process was based on seniority and # of hours worked previously. All union and ease driven. Nothing about the aide wanted other than some nameless description of a child " a boy in 1st grade at Roosevelt for a 6 hour aide". Certainly nothing about who the child is, their needs or who or what had worked for them in the past. I have always tried to stay positive with this educational system. I see parents who are jaded, negative and agressive. The "the school district (meaning all) will always try to screw you." I don't like that and I don't want to become that. But this is fucking rediculous. I hate conflict and I resent that they put me in this position again. I end up looking like the whining bitch. I know when I breathe deep that this may work out just fine, this guy who is supposed to be his aide-not that they notify me or anything-will work out fine.
I just hate the fact that you are already trying to deal with a kid who has difference and then you have to go throught this.

Baby A

Oh baby A
I love you
You're a good boy
It is true
You have big blue eyes
and golden curls
Oh A. I love you

B.A.-my song I sang to you as a baby and now

The Dream

As is often the case in the middle of the night, I was asleep in Ki's bed. "Mama," the said in a calm but slight ly excited voice. "I just had a dream about us."
"You did?" I asked in a now more alert state. "What happened in the dream?".
"You and I flew up into the sky."
The next day I asked her if she remembered having a dream and she said yes she did. That I was driving and I drove us upinto the sky. I asked if there were any other peopel or things and she said no. I'll haveto look this one up in the dream interpretation book. It's the first time Ki has ever talked about a dream.

Family

My friend B. is the wonderful mother of 2 boys, ages 5 and 20 months. The older son has special needs. Following a divorce that was not her idea initially she met a great guy who has 2 boys ages 4 and 6. All has been good and the 3 guys recently moved in. Yes, that's right 4 boys 6 and under. One with special needs and another who out grew a label. A repaireman recently dropped by and said "Nice daycare you got here!". Yesterday when we were over the oldest boy paid Alex, Kianna and I a compliment by saying that we should also move in, we just need to get more bunkbeds.

Sometimes you get a break

I have to say I am quite pleased! I got a call today that a woman is available to take care of the kids part-time this summer. This allows me to work at Iron Door and work at home without kids there. Also , gives me a break from kids and a chance for them to do more stimulating things than watch TV-especially Alex.
So get this-my babysitter/nanny/tutor has 2 masters, one of which is in speech therapy. You read that right AND I am paying her $12 an hr. She is Canadian and can't legally work until her green card arrives. Lucky me her dates correspond with mine. I will try and make it beneficial to her by letting her look at and copy any of my materials and perhaps observe some sessions with family/client approval, because I like to be nice and because I feel quilty. Oh sigh of relief...

Ki

Ki you are my joy. My 4 yr old girl. Just had an IEP and she was discharged from all services (speech/language and social skills). Most language skills now in 75th% for kids her age, up from the 25th% she lived at for her first few years of life, coupled with extreme shyness and social defensiveness/fear. The therapist saif as we were leaving, "She's going to be quite a woman." Yes she is, yes she is.

For all the mamas

I feel your worries, fears and fatique
...a new diagnosis...concerns about the sibling...another family member qualifying for regional center services...the label "retarded"...
It seems spring has showered your hearts with more concerns
I have had them and held them and also tried to shed them
I wish for you deep breaths and knowledge of friendships
and quiet peaceful moments here and there

Reasons to keep my fat belly

I keep it for my childen
They find great comfort and joy in my belly
It is the sounding board for their endless raspberry concerts
There is no end to the hunt for the treasure at the bottom of my belly button
There would be nothing to ooze out between the top and bottom portions of a tankini
I can mold it into various shapes and characters
Most of all, it is a mound of warmth often secured for snuggling