Thursday, October 21, 2010

There's more?

Apparently, yes there is. We finally had the Occupation Therapy evaluation for my daughter yesterday. After 2 hours, we left with a definite referral for the actual OT for SPD, as she qualified in several categories for it. However, we also left with a referral for a Physical Therapy eval and an Ortho consult. There were concerns with my daughter's spine and asymmetries in her upper extremities and pelvic alignment. Or something along those lines anyways, I had trouble keeping up. Her muscle development is not adequate either. She also had some motor delays.
So, my poor baby is apparently going to have a lot of challenges ahead of her. On top of the psychologist we will continue to see, she will now have occupational therapy at least weekly once the paperwork is in order, and likely will end up having physical therapy weekly as well. As far as the Ortho referral, I expect that she may end up with x-rays at a minimum and possibly even an MRI.
On top of all that, we learned on Friday that my husband will be losing his job with the milit@ry by the end of February. He should be able to get a new position as a civilian, but it's going to mean a lot of changes for us.
Please pray for our strength in dealing with all of this, and for the health and happiness of my daughter!

Friday, October 15, 2010

New contenders..

So the doc threw out 2 new terms today - Fragile X Syndrome and Bipolar Disorder. Yay. We're still thinking Asperger's is the leader though.

On a much brighter note (I hope), we finally have Isabelle's OT eval this coming Wednesday. It should at least finally bring us some relief with an official diagnosis and a game plan!

Friday, October 01, 2010

Diagnosis...

... still unknown! Surprise, surprise, the doc says my daughter is such a complex kiddo that it's hard to pin her down! She fits portions of 4 different things, the primary one being the Sensory Processing Dysfunction. She also has characteristics of some OCD, some ADHD and some Aspergers. But she doesn't completely fit into any of those categories! So, what he wants to do for now is continue with the plan for Occupational Therapy and see how things go once we get the sensory stuff more under control. The theory being that if you remove the SPD from the equation, it will be easier to figure out what is causing the other problems. Because he is still convinced there is something else going on in addition to the SPD. He's just not willing to "put her in a box" without being totally confident with his diagnosis.

The leading contender right now is what he called "a complex form of Aspergers," but since that generally requires medication to treat, he wants to be certain before we go down that path. As long as we are willing to be patient, he wants to continue evaluating her. Patience is not my strong suit, but in this case I will do all I can because I want what is best for my daughter. If she needs medication down the road, then fine, but we don't want to jump the gun. I personally find it reassuring that this doctor wants to be absolutely certain before labeling my daughter for life, and that he agrees with us that medication should be avoided if at all possible.

So, that's where we are. Still waiting on the referral for OT, going back to see the doc in 2 weeks, and in the meantime I get to try to analyze my daughters relationships. As in, what are the triggers to her often thinking her friends are mad at her and don't want to play with her. Thus far it seems that all the other kids play like normal kids, but Isabelle has trouble inserting herself into the group. She does okay with one on one, but with a group it's like she doesn't know how to interact. Unless they are actively trying to include her, she takes it as that they don't want her to play. It's kind of hard to explain. But I guess an example would be the last time we were all at my neighbor's house - kids from age 1 through 7, and Isabelle kept coming into the kitchen, climbing on my lap, and telling me that no one wants to play with her. I'd tell her to just go join in, shortly thereafter she would be back telling me the same thing again. A couple of times I went and helped her get in with the group by asking the other kids what they were doing then suggesting a way for Isabelle to join. Shortly thereafter, she'd be back upstairs pouting again. When I'd go down it looked to me like everyone was playing together fine. She often seems to have trouble fitting in with the group, but I can't really pinpoint the problem.

Anyways, this got to be a lot longer than I intended! I basically wanted to say that we're really not much further than we were 6 weeks ago! I guess it is kind of nice to have an expert confirm what we've always known - our little girl is one tough cookie!

Friday, September 24, 2010

With any luck, you'll never know...

what it is like on a day to day basis, dealing with special needs. It's exhausting. It's extremely stressful. It takes a huge toll on your mind and body. It's non-stop all day long. And often there is no help, because who can you leave your child with when even their own parents can't take it?

Thursday, September 23, 2010

Coming soon...

the results of all the questions, forms, test, etc.! Next Friday at 1pm I meet with the doc to go over his findings. Our PCM also finally put in the referral for OT. So hopefully we will have some answers soon!

Monday, September 20, 2010

The looks

As any parent knows, when your kids act up in public, you get dirty looks. Generally, you can ignore these, because you know you are doing what you can to correct the behavior. What are you supposed to do though when your 6 year old acts just like a 2 year old and your 2 year old acts like a 2 year old on steroids? It seems no matter what I do, I can not control my kids. My 6 year old can not sit in a chair for more than 30 seconds at a time. She is up and running and jumping and talking no matter how many times she is told to sit quietly. My almost-3 year old refuses to sit, runs away all the time, completely disregards any possible danger, doesn't stop when yelled at or called, thinks it's hilarious when you have to chase him down, laughs when you try to tell him what to do or yell at him for bad behavior, and is just plain very loud and active all the time.
At the clinic today, my kids once again embarrassed the crap out of me. They were clearly disturbing other people with their loudness and constant motion, but nothing I did or said made any difference. I tried to hold my son on my lap and he fought me, screaming that I was hurting him! My arms were wrapped around his waist and the only pressure was from him fighting to get away.

We spent 1 1/2 hours total at the clinic, between seeing the doc, going to the lab for a urine sample (which is a freaking horror story of it's own) and waiting for medicine. By the time we left, I barely made it to the car before the tears started.

I get looks everywhere we go. I don't even understand why my kids act the way they do, so how can I expect others to? I would hope it is enough that I am trying to discipline them, calm them, whatever, the entire time we are out, but I know it's not enough by all of the looks I get that clearly say, "what the hell is wrong with you and your children?!"

We went to a Special Needs Information Fair this weekend. Once we get a diagnosis for my daughter (and probably for my son in the future, because he is getting horrible about things), I am going to take some advice and have cards made up that I can give to the people who love giving me "the look". Cards that explain that there is a medical reason why my child acts this way, and that it's not for lack of proper parenting.

In the meantime, I ask that we all try to be more tolerant of the kids who are annoying us when we are out and about. There are so many unseen and not obvious medical conditions that can cause kids (and even adults, to be fair), to truly not be able to control themselves. Try giving the parents a look of support and understanding, maybe even actually tell them you appreciate how hard they are trying to keep their kids from bothering everyone else. At the very least, don't assume that they are lousy parents and that their kids must just be wild, crazy, undisciplined animals. Because that parent may very well be standing on the edge, ready to fall into the abyss.

Thursday, September 16, 2010

Why SPD?

In case anyone is wondering why I agree with the SPD diagnosis...

My daughter has always been very picky about her clothes and shoes. The past year and a half it has really escalated. She has 2 pairs of jeans that she will wear, and on some days even those drive her crazy. When I take her shoe shopping, she will try on literally 20-something pairs at 4 different stores and still not find a pair that "feels right". She has to have her shoes on very tight - if she had her way, she's wear a size smaller than she actually needs. She has been wearing a size 12 for a while now. After much searching we finally found a pair of shoes for her this summer, that she rarely complained about. She wore those shoes out playing outside, so we went to find new ones. After many hours of searching, we finally ended up buying the exact same shoes she wore out, in the exact same size. The shoes are maybe a month old now and most days she completely melts down when she has to put on her shoes because they aren't tight enough. She stretches the velcro so tight all the time that the straps are too stretched out to fasten anymore, unless she doesn't pull them really tight, which she just can't handle.

She has been late for school once already this year because she had a huge tantrum over her jeans not being tight enough. The same adjustable waist jeans she has been wearing for the past 6 months or more, and have been patched on the knees because we cannot find new jeans that don't drive her absolutely insane.

I had to take her to the counselor's office once already this year with us both in tears because her shoes were "not tight enough" and after 20 minutes of it at home I finally had to get her in the car and drive to school with us both crying. She refused to go to class because her shoes didn't feel right - the counselor and I did get her to go, but she ended up going with her shoes unfastened until recess.

Oh, and when I say she melts down over these things, I mean that the instant she puts on the "offensive" item, she will start wriggling all around, whining, trying to fidget it into just the right spot so it feels right, to no avail, and she will quickly progress to screaming and crying. With her shoes she will stomp her feet and practically dance around trying to make them feel better. She will adjust them a million times. Most days she leaves for school still "grumping" about her shoes.

So apparently, this whole SPD thing would mean that these "tantrums" as we call them are not her being stubborn, they are because the shoes or jeans or whatever are literally driving her crazy. Her nervous system or brain can't process things properly so it can feel to her as if there are nails in her shoes or pins on her jeans. Let me tell you, it is so hard when she is having these fits, because there is nothing we can do! She has to wear clothes, and she has to wear shoes. We have no choice right now but to force her to wear what is obviously causing her extreme discomfort. If we do get the official diagnosis of SPD, she will go to Occupational Therapy and we will also likely be taught how to "brush" her to retrain her nervous system to handle different sensations properly.

Here's a site that has a lot of great information...
http://www.sensory-processing-disorder.com/index.html

Tuesday, September 14, 2010

SPD?

Our psychologist thinks my daughter may have Sensory Processing Disorder. She certainly does fit the bill for it in many ways. We're waiting on a referral to Occupational Therapy for a thorough evaluation.
He met with her today for the first time. I have met with him alone once and with my husband two additional times before now. Based on everything we have told him, and his meeting with her today, he does think there is something deeper to this than just her being stubborn about things. He will meet with her again next week. For now he will not give me any idea what he thinks it could be, because he says he would still be guessing at this point. Honestly, I'd kind of like him to guess so I can at least know what he is thinking!
I hate waiting, but apparently that is what we must do. In the meantime, we need to work on having more patience with the, uh, idiosyncrasies, because she truly may not be able to help herself.

Friday, September 10, 2010

Our new challenge

I realize I have seriously neglected this blog. Every time I try to get back to it, I fail! Due to recent events, I am anticipating the need to have a place to document events and feelings once again, so I thought now was a good time to stop in and let anyone still lurking in the wings that I plan to come back! It will all depend on time really.
We finally pursued therapy for the problems we have been having with our daughter, who just turned 6. We have now received a tentative diagnosis of Sensory Integration Disorder, which we will be having a complete evaluation done for once we get our referrals in place. We are still working with the therapist to determine what, if any, other issues are causing the problems with our daughter.
That's about it in a nutshell.

Friday, July 16, 2010

Yup

So, I'm pretty sure that my daughter has ADHD and/or some sort of depression or anxiety issue. This kid fits the description for the HD part of this to a T and has for years. Here's what Wikipedia says:
"
Predominantly hyperactive-impulsive type symptoms may include:[34]
Fidget and squirm in their seats
Talk nonstop
Dash around, touching or playing with anything and everything in sight
Have trouble sitting still during dinner, school, and story time
Be constantly in motion
Have difficulty doing quiet tasks or activities.
and also these manifestations primarily of impulsivity:[34]
Be very impatient
Blurt out inappropriate comments, show their emotions without restraint, and act without regard for consequences
Have difficulty waiting for things they want or waiting their turns in games
"

She also has serious anger issues and can be very mean and disrespectful. And the topping on this cake is that she honestly seems like she just can't control herself sometimes!

I've been saying I should take her in for an evaluation for years... I'm at my wits end right now and have been for months, so I think I'm going to have to break down and do it. I don't want my child to have to be on medication, or to have the 'stigma' of a diagnosis like this, but I honestly don't know how much more of her behavior I can take!

So, anyone out there have experience with these types of things? Any advice? I've tried cutting sugar out wherever I can (and not substituting fake sugars), we've tried just about every form of discipline out there. All to no avail.

It's interfering with our family significantly. My daughter will be 6 next month. My son will be 3 in December and is starting to pick up a lot of her behavior. I spend so much time disciplining my daughter that neither one of my kids gets enough positive quality time with me!

I don't know what to do.

Thursday, January 28, 2010

Freaking out just a little...

So... I've been sick. For about 2 1/2 weeks now. I'm getting better... probably because I started on antibiotics last Friday. Also got a good cough medicine that day and the DH and I actually BD'd for the first time in over a week. Haven't since because I just don't feel that good. So why am I freaking out? My period was due this week. Usually comes Tuesday night, Wednesday morning... every now and then it waits until Thursday. But it is rare, and it doesn't usually wait until this late on Thursday. Yes I am on birth control... but antibiotics can interfere with those. We all know I'm infertile because of the PCOS... but even us PCOSers ovulate now and then. What are the odds that having sex on the first day of taking antibiotics could get an infertile girl on birth control pregnant not even a week before her period is due?
I'll keep you posted!

EDITED TO ADD: It is 7pm and this is officially the latest I will have started... if I do! Yikes! At the moment I am still convinced it will come and that the antibiotics and other meds plus being sick probably screwed my system up a bit.

EDITED AGAIN: Whew! Got it this morning. Breathing a sigh of relief. I might like another baby, but I don't think we're ready right now!

Friday, January 15, 2010

humf

Yeah, it was inevitable. I have bronchitis - now Julian is coughing just like I started out. I knew it was inevitable because he is basically attached to me from 5am - 8pm every day. No matter how much I direct my cough away from him and wash my hands, I breathe on him all day long. This really freaking sucks.

Thursday, January 14, 2010

I am only one person...

and I am not functioning at 100 percent right now. I have bronchitis; my husband just had surgery. Neither of us is functioning at 100 percent, or anywhere near it. Hopefully together we can at least come close to getting everything taken care of.

Saturday, January 09, 2010

My miracles

I promised pictures, so here they are! I meant to put them up yesterday, but it was my birthday and I kept pretty busy.

Julian


Isabelle

Tuesday, January 05, 2010

Single parents? Military?

Okay, I need some sympathy here from those who understand because they have been there. We are a military family. Yes, we chose this life, but mainly because we would not have one otherwise since neither of us could find work when we got married. Anyways, we move every 4 years. We have no family nearby. My husband is sent out of town pretty frequently, usually on short notice. If I'm sick, tough, there is no one to help. My husband and I have been out by ourselves maybe 5 times since my daughter was born 5 1/2 years ago. He was also deployed for my past 2 birthdays, probably more I just can't remember. He was deployed for last Thanksgiving, our sons first birthday, and Christmas. When he is gone, there is no one here to help me. I do it all, without a break. When he is here, I still do it all, because he works long hours and there is no one else. My husband is having surgery next week and will be put to sleep for it. Will I be at the hospital in case something goes wrong? No, because I can't keep the kids up there for hours, so I will be home with them, waiting for the hospital to call me to pick my husband up. My daughter will likely be either late for school or miss it completely.
Why am I ranting about this? Because I am sick to death of certain people who have no idea what it's like telling me I have it easy. When these people have a mother living very close by who watches the kids for free whenever they want to go anywhere, be it an appointment, the store, etc, takes the kids to and from school when it is inconvenient for the parents, has the kids all spend the night so Mom and Dad can get a break, it seems to me that they are the ones who have it easy. They spend every holiday with both sides of their families. They have no idea what it is like to not have Daddy around for days, much less weeks or months.
So please, anyone else who has been in my situation, please extend a little sympathy, because I am so sick of hearing how easy I have it just because I don't (can't) work outside the home. I promise to return the favor!

Saturday, January 02, 2010

I'm back!

It has been a long time since I posted. Once I gave birth to my son, I didn't feel comfortable continuing with my infertility blog. Not to mention how busy having two kids keeps you! Yet, I have often found that I really miss having somewhere I can come and write about what I am thinking and/or what is going on in my life. So, the blog has been revamped! Hopefully someone out there still has me on their bloglines. If so, give a shout out!

My daughter is now 5 years old and goes to kindergarten in the afternoons. We really wanted to get her in all day (as did she), but we moved here too late and were actually lucky we were able to get her in at all at the nearby school. She loves school and is doing great. Unfortunately, her being so smart seems to come along with a terrible attitude problem. So don't be surprised if you see frequent posts about her mouth driving me to my wits end! She is beautiful and smart and lots of fun, but boy is she a difficult one.

My son just turned 2. He seems to be a bit behind on his verbal skills, but he definitely makes up for it with his personality! He's handsome and silly and a definite Mama's boy. I wouldn't change it for the anything! Lately he has been refusing to take his nap - I'm not ready for this! Hopefully his sister going back to school Monday will help get him back on schedule.

I love our new home in Colorado, but I miss my friends in Texas. I find myself feeling lonely a lot and have to fight off the depression that goes along with that.

So, that's a little bit of an intro. I'll be back soon!

Friday, September 11, 2009

A Tribute to Michael S Baksh

Although I abandoned this blog long ago, I wanted to take a moment to repost this for anyone who may stumble across this page.

A tribute to Michael S Baksh....
Today is the anniversary of one of the worst days in the history of our country. I'd
like to tell you about one of the victims of that tragic day 8
years ago. Michael S Baksh was a 36 year old man who loved music and loved to dance. His wife and I share the same first name. Fate took him from her and their 2 young children. September 11, 2001 was his first day as an insurance executive at a company located in the World Trade Center.

The little I know from my research on Michael tells me that he was a man who loved his family and truly enjoyed life. My heart goes out to his family and friends. Please keep the Baksh family and all others that were victims of that tragic day in your thoughts and prayers. Feel free to share your thoughts and feelings on this tragic event in the comment section. If you happened to know Michael Baksch, please share your memories of him - I, for one, would love to know more. If you didn't know him, google his name and you will find links to many tributes.

We will never forget.

Sunday, November 30, 2008

Gee, thanks

for nothing that is. I just need to vent a bit because the kids drove me insane today. Friday evening we had Thanksgiving leftovers with our neighbors, who have family visiting. Said family has a son almost my daughter's age. My daughter didn't want to leave because she wanted to play more with this boy. Boys mother proceeds to say perhaps they can play together tomorrow and asks me if she has a bike. I say she has a big wheel and this Mom tells my daughter that she and this boy can ride bikes together the next day.

So, Saturday comes... and I see them all pile in the car just before lunch. Okay, no big deal, they can play in the afternoon right? I call and leave a message. I have no idea when they finally came home that evening but I never got a call back. Same thing today - no call. So my daughter has been hounding me every time she sees this little boy outside because she was told they could play. And apparently it's not happening. In her mind it is my fault of course.

Today I spoke with another neighbor who asked how we were doing and if I needed a break. I told her we were doing pretty good, but that my daughter would sure love it if they would bring their daughter over to play for a bit. I'm told they have some plans, but when they got home after lunch we could all go to the park or something. Okay, cool. Thank God I didn't mention this to my daughter, because they never called me back either.

To top it all off, my son screamed his head off for the majority of the afternoon and evening. For apparently no reason. I swear I wanted to bang my head against the wall and knock myself out so I wouldn't have to listen to it anymore.

To sum it all up, I'm pissed off because twice this weekend I've expected a little help with entertaining my daughter and haven't gotten it. It's not easy being the only person who is here to do everything for both children, myself and the house. Yes, my husband and I knew what we were getting into with the mi1it@ry life and I have accepted the role of single mother for possibly the next 4 months and am okay with it. We generally do quite well by ourselves. But don't offer a playdate to my 4 year old and then not call. Please don't ask me if I need a break and then not follow through on our plans. It just serves to cause me more stress and unnecessarily upsets my daughter who is dying for more play time.

On the brighter side, both kids are in bed, the dishes are done, the laundry is almost all done, the cats are fed, litter boxes cleaned, and I am heading for a much needed hot shower. Probably followed by some De@dwood, on loan from the library. And some 0reos. Must have 0reos.

It's beginning to look...

... a lot like Christmas!

So I've been busting butt and I think I'm finally done with all the Christmas decorations. I still have lights left but I can't think of what to do with them since I can't get them in the windows inside the house. If I have a 'bright' idea at some point, I may add them.

So, here it is! I feel pretty good about what I managed to accomplish. Many other people in our neighborhood have put lights up this year too and we are really enjoying the decorations! It's great to see the holiday spirit!





Sunday, November 23, 2008

All work and no play...

... makes me a crabby Mama.

I've been trying to get the house in order since my husband left last Monday (he deployed to Q@t@r for 4 months). I've also been trying to get the Christmas decorations set up. The Christmas stuff is coming along, but the house cleaning is going very slow. I just can't seem to get much done during the day because of the kids and after they go to bed I just never seem to accomplish as much as I want to. Each task seems to take much longer than I had planned. It's stressing me out!

I'm also bummed because it has become clear to me that I can't even come close to what I want to do with the Christmas decorations. My husband and I go all out for Christmas and each year we add to our decorations. Last year the house looked pretty darned good and we had even bigger plans for this year. But I just can't figure out his share of the work. He was in charge of putting the rope lights around the posts on the porch, and getting all the lights along the eaves of the house hooked up right. I'm afraid of ladders (not heights, just ladders) so I can't do the eaves, and I can't seem to figure out how he does the rope lights. I also gave up trying to put the lights up in the window because my suction cups kept popping off and I was getting too stressed. I remember it being a royal pita last year and I'm not willing to kill myself over it this year.

I just really want to make this Christmas awesome for my daughter. She is a total Daddy's girl and she really misses him. She is loving the decorations I've put up so far, and I really wanted to wow her with the lights and all. I guess she won't really know the difference if I don't get everything right. To her it will be wonderful and exciting.

I have to go chase my cat out of the Christmas tree. I was hoping this year would be easier since the tree isn't real, but alas it has not proven so yet. The little rat keeps climbing it just like it's the real thing!