Thursday, February 25, 2010

Daddy is furry

Yesterday Kaitlyn saw dad taking a shower. She first asked him why he was "white". then she asked him why he hard dark spots all over him? Dad finally realized Kaitlyn was talking about his abundance of body hair. He told her it was Fur.

Kaitlyn then asked Daddy why he had fur. Brian answered it was to keep him warm doing winter sports like skiing and playing hockey. Kaitlyn then asked Daddy" "When I grow up can I have fur?"

This morning she spoke about Daddy's fur again, and asked me why I didn't have fur. Then she looked closer at my arm and saw my light blonde hair and told me: "mom, you have white fur, does it keep you warm too like daddy?"

Oh, don't you love the things kids say?

Wednesday, February 24, 2010

Kaitlyn loves to draw

Have I mentioned that Kaitlyn loves to draw! Here is an example of her art work. These were each done in 1 day. The scanner didnt' pick up the whole paper, they are quite large.

Its funny, I just noticed that she drew a lot of not happy faces, surprised faces too. usually she jsut draws happy faces.
Sh can sit for hours and draw (we actually have to distract her to do something else).
Did I mention also that she is writing her name!

Friday, February 19, 2010

SPD - please help in recognizing this disorder.

Many of you may not know that SPD (Sensory Processing Disorder) hasn't been recogzined as an official disorder, so it makes it VERY difficult for parents to get treatment.

By now, you may know that Sensory Processing Disorder (SPD) is on the list of conditions still under consideration for the DSM-5, the reference work that physicians and others use to diagnose mental health disorders and many developmental disorders.

Did you know the American Psychiatric Association (APA) is soliciting comments on recognizing these conditions?

The Sensory Processing Disorder Foundation is coordinating an international comment campaign to show the APA there is widespread, informed support for including SPD in the revised Diagnostic and Statistical Manual that will be published in 2013 (DSM-5).

YOU can help promote recognition of Sensory Processing Disorder by submitting a comment on the APA website!

To make commenting as simple as possible, we have created a web page that includes instructions for reaching the comment area of the APA site. You’ll also find topic suggestions/sample language for different groups of supporters (parents, OTs, physicians, diagnosticians, etc.) based on what we know the APA is considering in their final deliberations.

Use our ideas or use your own - it doesn't matter. What matters is commenting. The most persuasive comments will be the ones that provide concrete, evidence-based information and/or observation based on your own personal or clinical experience.

Every letter counts! The deadline for commenting is April 20, but please act now. Numbers matter. A mountain of immediate, supportive comments will make a significant impression on the committee.

And please help us pass the word! Forward this message and/or the link to our comment page to colleagues, physicians (especially important!), family, teachers, clients, friends - anyone in a position to make an informed comment on the value of recognizing Sensory Processing Disorder in DSM-5. If you have a website, blog or social networking page, those are great places to get the word out, too. The more people who comment supportively, the better.

For years, people have asked us, “What can I do to help get Sensory Processing Disorder into the DSM?” Now is the time when individuals everywhere can help and what they do will matter. Support the movement to get Sensory Processing Disorder included in the DSM-5. Post your comments today. This is our last chance to be included in the DSM until 2025!

Tuesday, February 09, 2010

Svetlana Masgutova Method

I mentioned this over a year ago, but wanted to post again about the Alternative Therapy that we have been doing with Kaitlyn.

After our Christmas melt-downs both Brian and I felt immediately that we needed to call in our expert, "Bou" as Kaitlyn calls her.

After treating Kaitlyn now for a number of weeks again, Kaitlyn has started dressing herself completely (she still needed help to get dressed) and is showing an independent streak that's never been there before. She's been much more calm, and to be honest, we haven't had any serious melt-downs now for at least a month.

Boutains work is so subtle, you sometimes forget that the change in behavior can be attributed to her work, and it's not just a fluke. Boutaina is always so good at checking in to see what improvements we've seen, as it's easy to forget once the bad behavior (or other things) are no longer there.

I truly believe that a lot of Kaitlyn's recent success over the last year has been directly related to treatments from Boutaina doing the Svetlana Masgutova Method.

It's called the Masgutova Method. We found the most caring, wonderful practiconer in this method (and she's trained in The Anat Banal Method and Feldenkris, Chraion Sacral work and much more).

She's located in the San Francisco Bay Area California (specifically, Marin County).

Here is her website:
She'll even do a free 30 minute consultation with your child if you are interested! Tell her you heard of her from me!

Boutaina Rosen

Friday, February 05, 2010

No name post

I didn't know what to title this blog post...

Have so many emotions running through me lately. Had a 'bit' of spare time, so figured I'd try to do a post! Then I said, what do I blog about....there's so much.....hence why I couldn't think of a blog title.

Wish I could say that I haven't posted because things are just so great I don't have anything to post about (as a recent commenter indicated, I've always posted in the past when I was feeling down). Then again, things are a million times better than just over a year ago when we were in feeding tube and vomit hell. It really comes down to a serious lack of time. Serious. I'm up to midnight and 1am every night just trying to stay caught up.

And apologies to those that have emailed me on a personal nature and I haven't gotten back to you!

I've been sick on and off for the last 2 months, which is really a bummer, the best news is that the kids have been fairly healthy since Thanksgiving. Kaitlyn has a bit of my crud thing, but amazingly she seems to be weathering it really well. Now that I type this I realize how big a deal that is. I had the stomach flu (which Quinn and Brian got) but Quinn was over it in a day, whereas it knocked Brian and I out for 4 days.

I never did Christmas cards this year. This is the first year I've missed since I started doing Christmas cards. Sorry everyone if you were waiting for your McCarthy Christmas card. I was so stressed over the h holidays with work on top of everything else, that I just wasn't ever able to get to them.

Christmas was very hard for us this year. It became clearly evident that Kaitlyn has SPD (Sensory Processing Disorder). K's therapists have always told us that she has "sensory" issues, but every book I read on the subject didn't really portray my daughter. I was trying to find Kaitlyn's strange behaviors in the books, and I saw her but never in any of the clear categories the books describe. She fit in so many different areas.

She seeks out a lot of sensory input, but is terrified of loud noises (vacuums, public toilets flushing). Thankfully she seems to be able to become de-sensitized over the loud noises. You should have seen the melt-down she had when I ran this little robotic vacuum once! Oh my! She rolls all over the floor. She can't sit still in chairs when she eats, or brushes her teeth, or when you try to fix her hair, or basically anytime (except for when she's watching TV). In busy/loud environment she goes a bit haywire and bounces all over the place. She is constantly running into things and falling down. her pain tolerance is so high nothing really bothers her. She throws things. she has fits if as she says "my hands are empty", she always has to have something in her hands. We cannot keep toys together, as there are always parts all over the house, from her carrying items. She won't leave the house unless she is holding something.

On Christmas morning Kaitlyn got into one of her moods and was totally overwhelmed by the whole experience. Now, I say this knowing that most 4 year olds get overwhelmed by the presents and all, but this was different. She hyper focused on a brown cardboard box that a gift came in and couldn't be bothered to open any gifts. She's been excited to open gifts in the past so this was a little odd.

It's been more than a month now so it's a bit hard to describe actually, but she became very withdrawn and wouldn't interact and became very upset if you tried to take her box to open a gift.

She also started having some really horrible behavior, which is totally new for her. Now it could be 4 year old behavior, but our sweet girl has never spoken back to us and this was shocking. One day (when my mom and I were shopping and Brian was watching the kids at my moms house), Kaitlyn went haywire. Brian tried to discipline her by putting her into time-out 4 different times, which obviously wasn't working. She was in one of her as I call it "overload" modes where she becomes not in control of what she's doing. Brian continued to think she was just misbehaving and needed discipline. By the time I returned, all hell had broken loose. she was swinging things and breaking Christmas Tree ornaments, she was a sobbing mess and Brian had lost it.

After that incident, I got Brian to read one of the SPD books I have and after reading agreed that discipline in those cases wasn't the appropriate thing to do, (I was sooo happy that Brian started understanding what I've been trying to say for along time.) He felt I was being lack on discipline. I've always said I can tell when she's just misbehaving and when she's not in control. They are very different.

We try putting a weighted vest on her, or a weighted frog. But she thinks this is discipline so hates wearing the vest, which is too bad as it really does help her calm down. I become a bit at a loss of what to do when she's in these moods. Especially if I'm solo and with both kids as Quinn is no easy little guy. When they are both going at it, I start sweating and trying to do everything I can to maintain the situation. It's horrible. And I'm alone a lot with Brian's work schedule.

I just got off the phone with Kaitlyn's Special Ed teacher. We spoke mainly about how Kaitlyn is learning to deal with her Sensory Seeking Issues. The teacher told me:
1. Kaitlyn never walk places, she sort of dances/prances
2. She has an extremely hard time sitting in a chair so the teachers use a "lap buddy" a weighted something (like weights in a sock, a weighted heating pad) or something like that.
3. She often rolls and seeks out sensory input, and always has to have something in her hands

But the teacher felt that in the small controlled environment of this special ed class, she was doing very well at finding ways to get the sensory input she needs. Kaitlyn is still getting services 2 days a week with special ed and goes to regular preschool 3 days a week. The issue is that as Kaitlyn turns 4 in October she's supposed to go to Kindergarten next year, which I'm not going to do.

I've kept her back a year and put her back in the 3 year old preschool class where she is doing so much better this year and does interact with her 3 year old peers (who are all turning 4 now). Remember that Kaitlyn was supposed to be 4 in January (instead of last October). She does not act like the kids that she was in class with a year before. She needs to be in the 3 year old class. I'm going to have to fight with the school district so she can continue to get the special services once she turns 4.

I do feel really fortunate, after talking to a lot of moms that Kaitlyn is getting special services at all. As SPD often isn't recognized as an issue that is covered. Kaitlyn's receives services through Pragmatic Speech needs. Although her language is great, it's in interactions with others and her inability to focus that are the issues. That my school district does see that she's has some issues that are better off being address and giving her the tools to self-cope so that by the time she is in Kindergarten she'll have a current report on what helps.

From my understanding SPD is a life-time thing. It makes me sad. YES, I'm happy she's doing so well! Everyone loves to remind me of how far she's come and what a miracle she is....and of course I feel blessed that she is thriving in so many ways...

Of course I am, but don't all want parents want healthy "normal" child? We as parents want to give them the world and I feel so bad when I see that she is so different than other children. It breaks my heart.

Her newest "issue" is that she's refusing (and having melt-downs) over wearing a jacket. Not a good issue in the winter to have! (I'm really hoping this is just a phase, as I know a lot of kids go through things like this).

Now as I said, it's not all bad, (I'm just doing a brain dump here), there are a lot of great things happening too:

Every day she is getting better at self-help skills. Like getting dressed. The last few days she's even started picking out her own clothes. I was really happy about this. Most 3 year olds have been doing this for a long time. Our little girl just takes her own sweet time.

Kaitlyn learned to write her name a few weeks ago! I posted a picture of it on Facebook. I was so excited by this! and proud!

Eating: Well, I wouldn't call Kaitlyn a great eater, but I was just away on a Real Estate Conference for a few days and I brought her back some Chocolate Golden coins. I LOVED thinking about the joy that I would bring to Kaitlyn over a food treat. Food. She LOVES sweets, and like most kids I'm sure, would easily bypass any regular food to eat cream or any other sweet.

I do remember the time (Not so long ago) that everyone used to tell me, oh just give her sweets, that will make her eat. It never worked for Kaitlyn when she was tube fed. Now, it's another story.

Kaitlyn is getting taller all the time and now weighs about 31 pounds. She's still very small for a 4 year old and wears size 3 pants around the waist, but they are way too short for her. I was a skinny kid, so I basically don't worry much about food at this point!

Just wanted to make sure you read what I just wrote: "I don't worry much about food at this point!" Can you believe it! I instituted a program in my house that she gets what is prepared for her but she doesn't have to eat it all. She can be picky and goes without eating (which is still actually REALLY hard for me to do, as she would eat a yogurt if I gave that to her and I know she can use the calories). Sometimes I break down. but I don't want to create a picky eater.

She still gags on occasion. I'm amazed that she doesn't vomit. Just the other day she had a huge gag on something, and I sat there stunned, my heart breaking for her, remembering all the buckets of vomit we used to catch. Wow, shes' come a really long way.

Quinn update:

Quinn is now 17 months old. He started walking around Thanksgiving. He still tries to stand on his tippy toes. But he wobbliness is getting better. The little guy is so funny. He laughs and giggles and smiles and can be the happiest of toddlers you've ever seen. Then a minute later he either wants food (but not what you give him) so he screams and screams like you can't believe. If he wants something and you take it away from him, watch out!

I call him "Extreme Little Man", as he's very extreme, either happy and laughing, or screaming. When he screams. oh my I just loose it. It's so hard. Especially when he wants food. My help leaves at 5pm and I'm not much of a cook. So by the time I realize he needs food, usually about 5:15, I'm just trying to come off being a Realtor instead of being a mom and now I have a screaming toddler to contend with. (and of course when he's screaming, Kaitlyn usually gets set off). SO I start scrambling to find something I can heat up NOW.

How do working moms do the food thing? I'm sort of new at it obviously with having a regularly (well very picky) toddler and a 4 year old who has only been eating for a year. How can I have nutritious food ready for them when I've worked like crazy all day and I usually haven't' had time to eat myself?

I'm totally at a loss of what to do about the food issue. Then when I get him food if he doesn't' like it, he'll scream. What do I do? I'm trying to to reinforce the fact that he gets his way if he screams, but I don't want to give him, and he's super tiny also and needs the calories. Quinn also much prefers sweets. I can never give fruit before other food, as he'll never eat the other food.

Funny to say this but I still hate feeding time. For different reasons than before, obviously, but I really hate it. I don't have time to cook. I try to do an occasional crock-pot, but I don't have time for that either. when am I supposed to do the cooking? I don't know how working moms do it. Maybe their kids don't have melt downs at 5:15 when you've just gotten off work. Maybe their phones aren't ringing as I'm trying to hold my sanity with a screaming toddler.

It's really hard.

Then after I feed them, spend some time with them, do bath time and HOPE and PRAY that Quinn is in a good mood, as some times the screaming goes through bath time into bed. (other times, he laughs and giggles and is a joy to be around). You just never know what type of mood he's in, and it is horribly difficult to deal with. Sometimes he goes immediately to sleep, other times it's crying on and off for hours. Sometimes he sleeps through the night, other times, he wakes up inconsolable (I think recently that's been from teething).

After they go to bed, I sit back at my computer at 8pm, deal with any open phone calls I need to have with clients, then start catching up on work at 9. I still usually haven't eaten dinner (hopefully i've had some left-0ver toddler food). I'm so exhausted, all I want to do is crash in front of the tv, but most nights I end up working until anywhere from 11 -1am.

Besides being a full-time Real Estate Broker I also have to try to catch up on all the other things I do to, like:
-March of Dimes Ambassador Family and Family Teams Chair (now thankfully co-chair as I found some help and delegated). The walk is coming up in April, so that's really gearing up again.
-President of Marin Womens' Council of Realtors. I have to run monthly board meetings, sit on committee meetings and preside over our monthly lunch meeting (as well as travel 5 times this year to conferences).
-Ca State WCR Technology chair (I helped redo the state chapters website) which was sorely lacking before.
-Founder and Moderator of Preemie Blog Moms (support group for micro preemies, I now have over 600 member globally!)
-Founder of Bay Area Twinless Twins (we try to meet 1x a month to support one another)
-Founder of Marinwood Moms (a local neighborhood moms group) where I plan a moms night out once a month
-Member of feeding tube support group for bay area (where I try to attend the monthly support group meetings, which was my sanity savior and are now some of my closest friends)

I have started saying no, I've resigned from my local Realtor association Technology Committee, I'm doping my best to delegate as my role of President (which I can't wait to be over just due to the work load, but I'm committed and can't resign at this point) and as much as the state chapter keeps asking me to take on more leadership roles next year I am saying NO!

Oh by the way, I just returned from Indian wells and was awarded a very prestigious award:
California State WCR Outstanding Service Award.

THAT'S why I haven't been posting lately. By the time I get urgent work things attended to, the last thing I want to do is type more and blog.

How do working moms do this?