Wednesday, December 16, 2009

IEP progress

Jacob had his IEP meeting yesterday. What was a fiercely contested battle has slowed to a simmer. Now that everyone has gotten to know Jacob well there is far more agreement over what he needs. Finally even the autism consultant agrees he hates discrete trials and that Jacob is not "typically" autistic. The school finally agrees that while Jacob needs a lot of time his services do not require a large financial investment and have agreed to invest the small amounts of money necessary to have him remain in his current program. Jacob has gone from being viewed as a tremendous challenge educationally and legally to being seen as the impetus for a positive change. His arrival in this district has helped the school design its first comprehensive program for children with special needs. We still have a long way to go but we're headed in the right direction :)

Sunday, December 13, 2009

Dos Equis

We now have two out of three children with full mutations. Oddly the youngest was diagnosed first three years ago and in revisiting the Fragile X Clinic at Boston Children's we decided to have everyone tested. While its hard to hear the diagnosis I can't say that I am shocked. It answers a lot of questions about this particular child. (Which I have not named here because we are waiting to reveal the results to the children until after the holiday with the genetics counselor because she is so wonderfully sensitive to our children and how they feel about having Fragile X and having a sibling with Fragile X.

My mother who passed the gene to me is taking this quite hard. She described herself as a worm that infected her family. I think that is incredibly harsh, partly because if that is true of her than it would be true of me. She feels that if she could have known she could have prevented passing the gene along. I say you can't see this in hind sight. I went to genetic counseling before having my third child because one of the other children had learning and behavioral issues. I had all the genetic tests. All the ones they do if you DON'T have a mentally handicapped relative. Of course Fragile X was not among these. And in the end, the child with the learning and behavioral my only child who does not carry the gene at all. That child has 26 repeats. I have 92. The other siblings are fully methylated above 200 repeats. The is the child I was safest with, did all the right tests, ate all the right foods, and read all the right books for is the most affected. It's not something anyone goes looking for. Maybe it should be but honestly on my worst day, with everyone's special quirks driving me up the wall, my own included, I wouldn't wish it away. I would wish for life to be easier for my children, and would wish people to view them as the incredible, wonderful and amazing people they are without prejudice, but otherwise, I love every little oddness, every little uniqueness, everything that sets them apart just the way they are. Mothers of Fragile X kids see their children in a way that no one else sees them, not grandparents, not cousins, not friends. Its like Xray vision. We see through the preservative habits, the idiosyncratic speech, the temper tantrums to see angels. There is a light, a pure joy that surrounds these children. I pray for the day that medication is developed that helps my children succeed academically and navigate the world more easily but I also pray that it does not diminish all that is beautiful and special about them. My mother sees me tied closely to home and routine. This Friday she dragged me out to the movies with the kids, three out of four of them, the youngest home asleep. She says I need to get out. She doesnt understand that after a day in "real world' working in an inner city clinic that coming home to watching the same video for the 1oooth time this week, baking our gluten-free bread, giggling and laughing at the same joke that was as funny to one of the kids at 6am morning as it is at 6pm is as much my sanctuary as it is my prison.

Saturday, November 28, 2009


Since beginning the Zoloft Jacob has seemed more aware of the things around him and interested in a more appropriate way. Recently he has learned there are other itemsthat are not food to be found when shopping. Before taking Jacob shopping was only a challenge because he would get bored and act out by knocking over items or making noise. Lately this has been somewhat better, the noises are happy noises because he realizes there are toys and books and movies in some of the stores. On a recent trip to Walmart we discovered the beloved Buzz Lightyear action figure. Now his providers want me to have his vision evaluated for depth perception and distance but let me say he honed in on that Buzz Lightyear from two aisles over and then promptly grabbed my hand and gestured that I bring him in that direction. He pointed to it. I said "Do you want to go see Buzz?" he replied "yeah". Noticing Buzz was on sale for $20 less than all the other stores I asked, "Would you like to look at Buzz?" Another "yeah" I said "Would you like to take Buzz home?" I got an immediate "YUP" combined with the sign for please. Yesterday we went to a local discount store to look at Christmas decorations. I passed by a table full of items and Jacob dragged me toward the table. (He was in his wheelchair and he still dragged me) At the end of the table stacked on the floor were Christmas trains. (Jacob had previously broken our Christmas train) He grabbed the four foot by two foot box and placed it on his lap and said "I go, choo choo". From the glint in his eyes I could tell, "I go choo choo" really means, "I go home with choo choo" and "you're all done shopping because I really want to go home and play with this." Thankfully the train was ridiculously inexpensive. Other requested items were denied. My boy is fast becoming a shopaholic. I can see that our outings will be limited and there will be tantrums ahead as not everything can "I go" with us. While this all brings new challenges I am thrilled that he is understanding he has the power to request with words rather than tantrums and seems more aware of the process of shopping. He has also been handy in helping to load items into the shopping cart while grocery shopping. Its cumbersome to take him and be slowed down but we have always felt bringing him often helps him access the community and builds life skills. Hopefully we have not created a shopaholic of kleptomaniac in the process :)

Friday, November 27, 2009

Turkey Tracing

This morning Jacob got a notebook, a pen, and placed his hand on the paper and began to trace it. I imagine this might have been something done in school to make the traditional handprint turkey. The fact that school has been out for two days and Jacob initiated this one his own and enjoyed it is a HUGE step for Jacob. Previously he had no interest in writing or artwork of any kind, also he would rip paper, or make marks on objects such as the sofa, or newly painted walls. But this...this is GOOD...this is PROGRESS. I am so amazed and proud. Now to parents of a typical child, a turkey hand tracing by a six year old is just common place. But to those of us with Fragile children...this is just huge. Disclaimer....the pictured handprint turkey is not Jacob's we did not get this involved at the breakfast table.

Sunday, November 15, 2009

Conquering Textures!

Whoohoo! We conquered some textures today. Jacob has been on strike against any rice or noodle product for three years! I can understand the noodles now that we know he has Celiac. Maybe that was just instinctual but even when we make gluten-free noodles, he's resisted. And he used to beg for rice when we would go out to Chinese restaurants. Then all of sudden at three he began gagging and refusing certain textures. These included rice, pasta, vegetables unless they were pureed, scrambled eggs.

Today, VICTORY!!!

Jacob ate Golombki for lunch. Its a polish food that is hamburger, rice and onions mixed with a bit of tomato sauce and wrapped in boiled cabbage with a little more tomato sauce and a sprinkle of cheese. He ate two large golombkis. Maybe because the filling tastes like pizza his favorite food. I use a lot of garlic. Or maybe his polish gene finally kicked into gear :) Or maybe the Zoloft is helping with this as well. I tried giving him a piece of the cabbage with no meat because he has always like meat. He at it. I gave him a big slippery, stringy piece thinking for sure it would get rejected, fully expecting him to gag, and NOPE. Then hamburger that had a lot of rice in it, he begged for MORE. ??????????Go figure. Whatever has changed I LIKE IT.

Saturday, November 14, 2009

Having fun with technology

Jake's new Aug Comm Device can do so many things. I have to admit I have recently lost many hours after he has gone to bed learning how to change the screens, personalize it, import objects etc. Today I was able to add digital copies of video clips from When he plays an icon of Thomas the Tank Engine, he can now watch a clip of it. I also was able to record audio clips of Blue's Clues and make a page where he has icons of one paw print, two paw print and three paw prints. When you press them they will say "that's the first clue" or 'that's the third clue" then when he presses the notebook it plays the part of the song where Steve says "put it in our notebook" and then a picture of the thinking chair that now sings "sit down in our thinking chair and think, think think." It's been a lot of fun and a good deal of frustration figuring it out without having been given a manual or any training. The look on his face when he figured out he good sing his favorite song in the voices of the actual characters rather than the computer generated speech was priceless! I wish I could have frozen that moment in time. It was the look you would see on any adult who had just won the powerball! Awesome!

Sunday, November 8, 2009

What's new???

Well it has been quite some time since I have blogged about anything. In that time so much has been happening. Jacob has seen so many new providers since my last post. We are now using a high tech augmentative communication device on loan to us from the wonderful people at Easter Seals. We will be renting one from AMDi after the loan period is finished. Jessica our incredible SLP at Boston Children's has helped us program it and Jacob seems to really enjoy having a 'voice'. Of course with a 'voice' come new demands. Before there would be tantrums with an unknown cause. Now we have meltdowns when Jake has hit the "I want" and "doritos" button for the 20th time in an hour. Or at school when I neglected to keep the device from navigating to the "I want to watch a movie" and all of the "movie choice" icons while he is in school mode. So now reason is shown to be behind the protests. Now we can see the thought process. Now we have to realize that desires can be spoken and not all desires can be satisfied. Now we have to have a behavior plan.

And on that note Jacob has also started taking a very low dose of Zoloft in an effort to ease some of his anxiety. Now as a nurse I know it takes weeks for Zoloft to be therapeutic even at adult doses and his dose is near microscopic but I swear I already see improvements. Jacob seems to be responding to his name more quickly when spoken to. He seems to notice his surroundings more thoroughly. His eye contact seems improved in frequency and duration. He has always had good eye contact when compared to other autistic children but now seems even better able to focus. He seems less averse to tooth brushing, toileting and other sensory stimuli. I am not saying these have improved to perfection...or that Zoloft is the sole reason for this but I do believe it has helped. I cannot describe the difference I see in him other than that I see a 'spark' a 'flicker' under the surface that was dull and infrequent before but seems to be growing more constant and bright.

Life is now more complicated with a child who can 'demand' things, specific things and whose curiosity for life has now grown but I would gladly repeat 'no' a thousand times per day for his requests and erase the pen marks on my walls (he has discovered he can write) then to ever go back or dim this new spark. Now I have to convince the school staff that this new frontier of defiance and adventurousness is a good thing.

Wednesday, July 8, 2009

Sleep deprived.

Ok, I am a medical professional but I cannot understand why I need to further sleep deprive a child with a sleep disorder for an EEG that I am going to sedate him for 30 minutes before they attach the leads? The reason we are having the EEG is because he doesn't sleep and awakens during the night with bizarre laughing spells and strange leg movements. So my fiance has taken a nap, brewed a large pot of coffee and is being kind enough to take the night watch so I can sleep and attend work in the morning.
As a nurse I am praying that my son just secretly likes to torture me nocturnally and that they 'laughing spells" are not gelastic seizures but just pleasant hallucinations. His pediatrician tells me he could be having benign Rolandic seizures which he could outgrow however she does not understand Fragile X as well as I wish she did. The only children in my experience I have seen have the type of 'laughing spells" my son has have had encephalopathy or a hypothalmic benign brain tumor. Both of which totally freak me out. I have not met any other Frag X parents who have described this type of seizure. This will be the first EEG in over four years. The last one showed nothing despite a definite 30 minute absence seizure weeks before the test. I am keeping my fingers crossed that whatever is going on, sleep disorder, restless legs, seizures, that it will be seen so it can be addressed.

Thursday, June 11, 2009

New hope

Have you ever gone to some job interviews and you feel like you are digging down for any tidbit to drag out to showcase your talents and came up short? And then there are other interviews where it is like you are in a room where everyone speaks exactly the same language to the point that you really could communicate telepathically? Where the interviewers thoughts spark yours and yours theres and its like business sex. The give and take being so intense and fitting so perfectly well together that you cannot imagine yourself not being with this person, these people in some strange menage a mind-meld? That is what my interview was like yesterday. It was like going back to the womb and being accepted and welcomed and so entirely at peace. I pray I find myself going there and doing wonderful amazing things.

Thursday, June 4, 2009

And baby makes three...

No, I'm not pregnant! For goodness sake I have my hands full enough. But it got your attention didn't it. What am I talking about then? I'm referencing the fact that my daughter's newest educational evaluation shows she has learning disabilities. That makes three. Up until recently her school progress has been up to par in every subject but math. So..from what the evaluators explained her IQ has been sufficient to get her through previous years but now she is at a point where her IQ level is staying the same and the subject matters is increasingly difficult. Sigh....the saying we can't pick our parents comes to mind and I feel like I have failed my children genetically. Here I sit having graduated college cum laude and sigma theta tau as a single mother of three and my legacy to my children is a genetic defect that causes them to struggle intellectually in a way I cannot even conceive of. Now comes the task of learning how to help my child learn.

Tuesday, June 2, 2009

Sweet Serendipity

Well as hokey as that God shuts a door and opens a window saying is...I guess things like that do happen. Today I was just randomly checking my email after deciding the bills in my real mail were just too depressing to contemplate and Wahlah! It seems I applied for a job months ago when I was tired with the horrible schedule my job at the time offered. I never heard from them, and chalked it up to the economy, karma, what have you. I took a crappier job with a crappier but more regular schedule, left that job because it was insanely impossible and unsafe only to return to my good job with the crappy schedule. Just minutes before checking my email, I had passed by my refrigerator glanced at my incredibly life-sucking schedule and sighed and thought, I like the work, not the hours. I kept repeating that as my mantra. I like the work, not the hours. I am lucky to have enough work. I said it like it was a religious chant. And then came the Wahlah...a random email saying I had applied for a position, they had a hiring freeze, the freeze has thawed, can I come to interview in three days? For a job with a daytime Monday through Friday schedule working with other well respected medical professionals??? Hmmm, couldn't hurt to take a peak and see if the grass is greener or if life would find its way toward normal should I entertain their promises. My mind is wandering to days with a normal routine and my kids knowing when they would see me next spending weekends at home more often than away. Could this be seems so impossible. There must be a catch.

Friday, May 29, 2009

End of My Pity Party

Well I feel much better after ranting in my last post. I threw a fit yesterday (in my head at least) when my scheduler at work informed me she scheduled me for a 7th weekend in a row, six days straight and more than 50 hrs in seven days. My son has been pointing at my picture and saying "Ma Ma Ma Ma" just before his 7:00pm bedtime which most days I barely make it home for. This saddens me because just pointing at my picture and attempting to say my name takes incredible effort for him and he only does things like this when he is desperate for something. Its not that I feel I am neglecting him in any way. I spend every ounce of attention on him that I can when we are together, its just I feel we are not together as much as we would both like to be. Then I began thinking I am one of the lucky people who in this economy are sought out for more work rather than less and my patients and their families request more time with me than other staff for the same reason my son does, they enjoy my care. I should be thankful.

I think its harder though for a mother to go off to work and be the primary breadwinner of the family than it is for a father. I am not saying that there are not some fathers who are drawn to being home with the family and deeply miss their children while they are at work. I do think though that overall mothers feel more torn than fathers. My fiance happily stays home to care for the children but he says he does miss working outside of the home at times and he would not feel badly about going off to work if it meant providing for us. Whereas I feel torn between providing financially and emotionally for them. Both my fiance and I came from homes where our mother's worked. We grew up in the same era, same town, same circle of friends and yet we see this differently. He sees his mother as a strong, capable woman who choose to provide for their family and does not feel he missed time with her. I remember missing my mother deeply when she also worked as a nurse and her shifts were long, and weekend work was frequent. I also remember her handling the juggling of it very well. I simply never want my children to feel that deep sense of longing to have more time with my mother that I experienced and it is clear by my son's communication attempts that he feels this way.

But my pity party has ended. The situation is what it is. I can only learn from my mother's example to do the best I can with what I have and attempt to set some limits with my employer and hope that my children are not discouraged when we miss a few hours with one another.

Wednesday, May 27, 2009

Future Foreboding about the Fragile State of My Life

As it happens every time my little man goes to an eval I see the side of him I tend to ignore. I find myself so amazed every day by his progress and his true valiant attempts at normalcy that I often don't realize how exceptional (and I mean that in all the ways it can be meant) he really is. Most especially though the evals always point out just how severely affected by Fragile X and its accompanying mental retardation and autistic behaviours he really is.

As if the eval by itself weren't enough of a reminder of what an incredibly difficult road lies ahead for my youngest child I was sitting in the waiting room of the orthotists office later in the afternoon and saw a magazine on the table regarding Autism. The article was "How Autism Ages" by Karl Taro Greenfield from this month's Time magazine. Just to torture myself further I decided to read it. I say torture because previous to my career as a nurse I had worked in group homes and residential facilities and am well-aware that Autism is not a "childhood"disorder. The article pointed out something that has been running through my mind both as a mother and as a medical professional for some time now. If 1 in 150 of today's children is autistic and the baby boomers are aging rapidly what does that mean to my generation? What does it mean for the parent's of Fragile X children who have aging parents who may or may not even have Fragile X Ataxia? How overburdened are we as caregivers going to be? How can we provide financially for this burden? How can we prepare ourselves emotionally or even physically to be so depended upon? What happens if we get sick? Who will be there if when we are outlived? These are the "don't think about it" questions that are taboo to mention even to other parents of special needs children.

I sit here contemplating this while ill with what may be a ruptured ovarian cyst or something worse as I skipped my biopsy last summer. I sit here with no time off should I need surgery. I sit here with no short-term disability insurance. I sit here with no other income producing parent to assist me. I sit here here with no life insurance. I sit here with no medical insurance because I changed jobs and my new insurance has yet to begin. I sit here scared clear out of my mind!

Am I making it out to be the worst case scenario?...of course. Sure its probably just an ovarian cyst, not ruptured, caused by Fragile X Premature Ovarian Syndrome that is just making me sick and screwing my hormones up entirely while making me a miserable neurotic mess. But in my head I have already doomed myself to ovarian cancer. In my head I am thinking how the hell long would I have to be out of work if I needed chemo. In my head I have doomed myself for skipping last years biopsy because I didn't want to suffer through any more pain or time out of work. In my head I see my son shipped off to his schizophrenic father shortly after my funeral because his siblings are not yet old enough to care for themselves never mind a mentally challenged younger brother. I have imagined my fiance devastated, homeless, wanting to keep the children (who in every other way but genetically belong entirely to him) but having them taken from him because I did not provide better financially or legally.

Reading this article just threw me into a "what's the worst that could happen" tail spin. Because all it would take to pull the rug out from under my family entirely is for me to get ill for more than three days. That's the reality. That's the "fragile" state of affairs. That is the tight-rope walk I perform day in and day out. Don't fall, walk a straight line, don't look back, don't look down, keep your eyes ahead, focus on getting to the other side....without falling.

Saturday, May 23, 2009

Economic Awareness

Apparently the economy is on everyone's minds. Last night while having a campfire to roast marshmallows out in the yard a friends son turned to his brother after witnessing him dropping and scortching marshmallows repeatedly, "You know, you really shouldn't waste marshmallows in an economy like this." The marshmallow waster will be eight today. I believe the economist is ten.

Wednesday, May 20, 2009

The Unjustice System

Ok, bye now people reading this now that I am the mother of three children and one soon-to-be step-child from three marriages. While that sounds pretty strange I'd like to explain a few things. When I first married we were very young, we found we weren't compatible, we parted bitterly, and now that we are older and wiser have become friends.

Going into a second marriage one tends to be cautious and more committed because no one wants to make the same mistake twice or bring their children into a situation that may not be permanent. But NO ONE goes into a marriage to a person expecting that person to have a total personality change due to mental illness. But sometimes it happens. Schizophrenia hits young adult men suddenly from out of nowhere. And one year into my marriage I found myself with a newborn son who appeared to have a yet to be discovered disability (fragile X) and a husband who seemed to be leaving reality and sanity by the wayside some days. So like any caring wife I begged for my husband to seek help and of course he blamed each therapist for not having the right answer and not telling him what he wanted to hear. Each medication didn't work because it wasn't the high he got from stuff he sought on the street. He began to recall conversations that never took place, his behavior became erratic and dangerous, he lost jobs, committed crimes and when he finally became assaultive to myself and my oldest two children I had to end the relationship.

So here I am a few years later. At first he was granted no visitation, then supervised, then unsupervised for short periods of time and now he wants overnights. My ex has not improved much at all and is now requesting overnight visitation with my son. My son has had a guardian ad litem appointed due to the constant irrational and unfounded accusations my delusional ex has made against me. All of these of course have been proven false and thankfully the court is now aware of his diagnosis and discounts his outrageously delusional ravings.

June 1st I have to go to court at his request because he wants to spend overnight visits with my child. I ask you friendly readers of my rant...would you let a person care for your child if they were on social security for a psychotic disorder, had a criminal record of multiple assaults and theft, were a registered sex offender, were a non compliant diabetic who could slip into a coma at any moment because his blood sugar is frequently 500 and whose live in girlfriend caused your child second degree burns while working as his paraprofessional at school? I'm pretty sure every single one of you replied OF COURSE NOT! He is not even able to volunteer at my son's field day at school because he cannot pass the CORI check.

According to the court it is my ex husband's God-given right to overnight visitation with his child due to his "biological" connection to our son. I'm sorry but I hardly see how DNA trumps criminal and psychotic behavior? Maybe this country really does have too many freedoms. The guardian ad litem actually suggested I let him "attempt" overnight visitation and "fail" at it while under the "watchful eye" of the court. WHAT? What does "fail at it" mean for my son! Is the court's "watchful eye" going to be there when they find my nonverbal, severely disabled child who cannot express his needs dead because his father passed out and my son fell to his death? "Watchful eye!" My son doesn't need a watchful eye, my son needs constant one on one supervision by someone who can at the very least take care of themselves.

Monday, May 18, 2009

Fire and Water

No the title of today's blog is not a clever metaphor just simply the elements are they are. Why am I thinking of them at the moment....well today the basement had both fire (ok smoke signaling the coming of fire) and water. My fiance decided it was so nice the other day that he left the basement hatch open so our family room down there could have a much needed breeze and some sunshine. Well he closed the inner door to the stairway and left the hatch open, went to bed and then we had thunderstorms after midnight. The hatch remained open and water cascaded down to our carpeted family room. So today while using the wet vac to remove the remaining moisture I begin to smell sulphur. Hmm? I'm not using any sulphur, not using any fireworks or gunpowder so....should I not smell sulphur. I go outside, it smells stronger. I think Great! It must be someone else burning something with sulphur, and then I look to the sky! A giant black plume of smoke is coming from the chimney..(we have no fireplace). The smoke begins to get darker and darker. I call inside for my fiance to call 911 and turn off the furnace asap. We get to meet the entire town's fire department including the Chief and its two ladder trucks and some of the town's police staff too. Its a small town. And I've already been told our moving here has cost the town thousands in special education...I can only imagine this added more to our tally. Apparently my landlord decided it was ok to skip spending the $100 to clean the furnace so he could risk hundreds of thousands along with our lives by not cleaning it. Thankfully today was my day off and I was here to see and smell it before the house caught fire!

Saturday, May 9, 2009

Family Dysfunctions

Today was my first Saturday off in the past four months. Of course my family decided to plan a picnic for Mother's Day and my grandmother's birthday and my fiance had to attend an out of state funeral so it was not the peaceful sleep in idylic day I had been longing for. (Ok Frag X Moms go ahead and laugh out loud at the sleep in part of that..its a given) Needless to say this left me alone with my two teens and my five year old Xman. So I recruit my mother.."If I go to this shin dig, will you help me keep an eye on Jake?" "Sure she says, I'll give you a hand as much as I can." So I've agreed to attend and she's agreed to help. Great.
Then I get a call from my uncle.."Your Mom has the flu again..and won't be coming." This phone call immediately parlays inferred guilt and really means, "she's out, are you still in?" So since I blew off the last family shin dig due to work and severe exhaustion, overly busy children and the fact that I live out in the middle of nowhere...I foolishly agree to attend sans my mother.
I suddenly want to switch bodies with my single, childless brother who lives a six hour flight away and is probably enjoying a lovely hike or a beer. But I agree to go.
Going to this event involves getting everyone up and dressed and out of the house to drop off my fiance in one town then driving 20 minutes to their bowling tournament, hanging out with my little Xman for an hour biding our time during the tournament and then driving another 30 minutes to the park for the picnic. Did I mention we live in the middle of nowhere...where cell phones don't receive messages about picnics being moved to the community center of my grandmother's assisted living facility due to a passing shower????
Arriving at the park, I see no one. I look down at my phone that does not have service at the park either and see my uncle's number as a missed call and three voice mails. THAT I CAN'T ACCESS due to lack of service! I say WTF to both myself and out loud in front of my kids. And my teens reply SERIOUSLY Mom WTF how inconsiderate they know Jake can't take all this running around. They're right. And once at the park we CANNOT leave without the promised train ride for being such a good boy waiting through all the driving to get at least that far. So my daughter takes Jake on the train, then I take Jake on the train. We watch some cool Morris Dancers in the park for a few minutes and drive off to the assisted living facility.
I call my uncle once I have cell service again. I say I didn't get the message I will be there at started at 12. I have some of the food so I feel terrible thinking everyone will be waiting because I have some of the food or that they will have already eaten so what's the point when I could have stayed at the park and had a nice Saturday with my kids.
We arrive only to find that my Aunt has been there and left to pick up my 15yr cousin from dance class two towns over and no one has eaten and everyone is waiting for her to arrive. Jake is freaking out, he has never been to this place, he rarely sees my relatives and Wallah we are stuck sitting waiting for over an hour for my aunt. Meanwhile my grandmother whose party this is has to take off in an hour to attend a 50th anniversary party!
What the holy heck! These people have seen Jake enough to know what a day like this entails for he and I. I think there should be some sort of sentence for people who pass on this lovely genetic windfall and then close their eyes, and ears and throw common sense to the wind when planning a gathering with them! Maybe they should be forced to spend one week alone with my Xman, go everywhere he goes, do everything he does, be awake when he's awake, watch the same video twenty times per day.....
Any thoughts???

Thursday, May 7, 2009

The Today Show...

Today I was having my coffee and watching the Today Show, just moments ago and there was a woman who had written a book about motherhood in response to some negativity she received after a comment she had made during a previous interview. Today's interview focused on how mother's tend to judge other mothers and the pressure we put on each other to be perfect. OMG I thought just yesterday I dealt with this. I have a bumper sticker on my ugly, dented, blue minivan that is filled with spilled goldfish crackers, randomly thrown sweaters and forgotten toys rolling around on the floor. The bumper sticker reads "I love my rotten ungrateful children." In general this bumper sticker gets nothing more than chuckles, thumbs up as I drive by or people just shaking their heads.

Yesterday however one of the physical therapists I share a patient with asked if the van in the driveway with this sticker on it was mine. I said yeah of course it was mine, she knew who the only other car in the drive belonged to. She rolled her eyes and said, "really you're children are rotten and ungrateful. Well mine never were. I guess its because they were raised poor with nothing and are thankful for everything they have." OMG I wanted to slap her. I don't know this woman from anything other than the 30 minutes per week she spends with my patient. I reply, "You have heard of sarcasm haven't you??"

Holy Moly! Obviously this woman has no idea that previous to my adequately paying career (she earns equally as much!) I was in school in my mid thirties finishing my last semester on welfare, divorcing a husband with a psychiatric condition that presented itself in my third year of school just six months after my youngest child received a Fragile X diagnosis. My children are far from privileged. What gives people the right to assume things about another? Really what are they ungrateful for the ten year old dented and somewhat broken minivan the stickers are applied to? Or are they ungrateful that their mother spends her time caring for other disabled children so they can eat and have a roof over their head while she has her own special needs child at home? I wanted to scream and slap her across the face. Instead I simply said, "Really, its not literal, I tease them, and unlike others they get that its a joke!) Just like the bumper sticker along side of it that says, " I like poetry, long walks on the beach and poking dead things with a stick!" Like I have time to go around and poke road kill!

Saturday, May 2, 2009

One job down!

Whoohoo! My honey got a new job and I finally said enough to my crappy job all in the same afternoon! Life is good :) Maybe now he can get the out of the house interaction he is craving and I can get the at home time I am craving and all will be well ;) Hopefully our schedules find their way around each other. I can't wait to be home even if its to do the laundry! Also I really enjoy seeing more of my pedi patients and their families. I've missed them the past ten weeks. Wow it seems like so much longer.

Friday, May 1, 2009

Guilt..guilt and more guilt.

Well...they tried to get me to stay at my night job and I attempted it...and it made me sick. So is it wrong to leave if the place is making me sick?? Really the only reason I stayed is to help them out...and they have been shmucks. Why is it that carriers of Fragile X have that guilt that comes from nowhere? My mother has it. I always thought it was just from being raised Irish Catholic but then reading up on Frag X I found that female carriers have a common issue with guilt. I mean feeling bad about something that no one else but you would feel bad about. Like leaving a job thats treated you like dirt or feeling you are letting your coworkers down when more than likely they will forget you before your car is out of the parking lot. Or thinking you aren't doing enough for your family when really you do so much. Any other Frag X moms out there every experience such a thing.

Monday, April 27, 2009

Just when you think you're out...

They pull you back in!
So goes the saga of my leaving the nighshift at the nursing home to go back to full-time at my day job in pediatrics. I was told it would be so easy. No problem. You wanna come back, sure, according to us you never left. Heck you still are on the payroll part time anyway, we'll just work up your schedule, give us a week....
Sigh..... If only it played out like that.
On the other side...."I am leaving, I'll be done by the end of the week. I cannot work here under these conditions and do it safely." And then.."Well your coworker will be out for another full week, can you stay just one more week."
And so goes the saga of not enough hours on the dayshift and too many on the nightshift....
My solace...I have daytime appts all next week :) And I have been promised day shift by the middle of the month.
So I will continue to blog in a sleep deprived daze wondering how the career that I thought would be so wonderful and fulfilling finds me wishing I could live on the salary of a burger-flipper. "Would you like cheese on that?"

Separation anXiety

Well April Vacation is over and today the little blue bus came for Jacob while I was still away at work on night shift (three days left and counting). Apparently Jim put him on the bus and there were big tears and drama. Its two hours into the school day and no calls home but I can only think my sleep will be interrupted by noon so I have yet to attempt it. Jim is off on a job interview and I wish him the very best even though it means big changes for our routine and I can only hope Jake will tolerate the change. He's done so well with all of our changes lately, a new house, a new school, and now "dah-di" will be going off to work. Here's to hoping the "dah-di" will be here in the morning and the "Momma" can find someone in the afternoon. Childcare for special needs children is few and far between. There are only two dedicated special needs child care facilities that I have come across in our state and they are both more than 30 minutes away.
As a pediatric private duty nurse you would think I could find a good respite provider..but no.

Someday... maybe I will start a special needs before and after school program or even a daycare. Then I can tell tales about the "old days" when children were discriminated against because people did not understand their behavior or were thought of as a liability.

Someday ...parents of special needs children will no longer have to give up their jobs and financial stability and their careers because they can't find anyone to assist them in caring for their children.

Someday... the state and government will realize that it is far cheaper to assist in the care of a group of children than it is to supply parents with subsidies to stay home, subsidies that no one could comfortably live on.

Someday... parents won't be working opposite shifts at work and opposite shifts at home caring for their children in an exhausting tag team match because there will be a place they can turn that is safe and reliable, understanding, and trustworthy. Until that day....parents will continue to do the amazing.

Friday, April 24, 2009

Small Wonders

Today I got an IM from my fiance that my son Jake who has been diagnosed as "nonverbal" said "more daddy" clear as a bell. He apparently wanted my fiance to replay the credits of the movie "The Incredibles". For some reason he loves the credits.

This may seem like no big deal to some but for Jake this is huge! When Jake was 18months he had an appointment with a pediatric developmental neurologist who after examining Jake sat down with his father and me and actually she actually said, "I'm sorry for your loss. This will be a grieving process for you as you come to understand the loss of a "normal" child and you accept that your child will be profoundly mentally retarded and live in an almost vegetative state and require life-long care!"

I looked at the doctor and said as my son was tearing up her waiting room and running all about, 'Thanks for your opinion but it appears my son is very much alive and having been told that his older brother was not going to survive to be born and then would never speak and is now a 10 yr old who loves sports, has no medical issues and will never shut up, I will have to take your opinion as just that."

I left her office thinking that I will grieve for the fact that people will view my son this way but I will never be sad when I look at this child and I will never give up believing that there is something beneath the surface in my son that cannot be examined." There are sparks of genius seen in my son when he can problem solve to meet his needs. When he sneaks quietly up the hallway looking to see if he will be caught stealing a snack from the kitchen by attempting to sneak the peanut butter, the knife and the bread out in multiple trips and hides them in his room, I know, there is much more going on beneath the surface. Just because it is hidden does not mean it does not exist. Just because someone is silent does not mean they cannot be heard.

So today when he speaks even briefly as clear as a bell I want to shout as loud as I can.... "shove it up your *** medical science! Grieve this! My baby has something to say and knows exactly what he wants!"

Off to work!

Going to work at the job I actually love today. Will attempt to post from the laptop since the cell phone is dead.

Thursday, April 23, 2009

A new intervention

Today we take Jake to Woburn to get his new orthotics. The wonderful therapist at IAM orthotics and prosthetics was able to fit Jake in just minutes with some nifty foam rather than casting his feet. Today we'll get his orthotic inserts for his sneakers to help with his pronation of his ankles and the dropping of his arches. Jake has the prader willi phenotype of Fragile X which has caused him to be overweight. Seriously he doubled his weight once that part of the syndrome kicked in. So the added weight plus his perpetual bouncing has really not helped his feet. I am hoping these help to correct it. A new house with a big yard and a pool will hopefully help the weight gain. Orally stimulating chew toys have helped his obsession with eating. I can't help but think that for the last two years in our old apartment he was like veal! Truly kept in a small space with no way to work off the food he is drawn to. Having such intense social anxiety he wasn't able to enjoy activities at parks or playgrounds. Now that we have conquered the fear of uneven walking surfaces and can even walk on grass barefoot I have big hopes that this spring and summer my little chubba bubba will slim down :)


I'm learning to twit. Is that an oxymoron?

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Wednesday, April 22, 2009

Taking care of me...

In response to my previous post I have decided to stop my whining and take care of myself!! I can't expect anyone else to care about me more than I care about myself right! Sooo....I have decided that the best way to take care of myself is to tell my current employer to stick it!

Don't panic the only working member of my family I am not just going to go jobless! Holy hell that would be nuts! I'm just going back to the job I had full time before I went temporarily insane and went part time there to go full time at a job who could care less about me. Sometimes the grass is not always greener and sometimes leaving a job you love to make more time for your ex husband (who you anything but love)'s B******t is not the best move. Seriously what was I thinking, work night shift to spend time in court with that fool????

So here I sit contemplating life...deciding to take care of myself and go back to a less stressful job, with better health benefits...and somewhat less cash because well, they were my second job, which will now be nonexistent. My first husband found himself laid off last second husband is on disability because he really is certifiable..not by my say so but because the federal government has deemed him nuts..and my wonderful fiance who left his job to care for my son has found that a budget freeze in this wonderful economy of ours prevents him from working at his previous job. And still I think I need to take care of myself...spend time with my family..and live with less.

So we have crappy clothes, we stay in rather than go out, we watch from the sidelines as friends and family go on marvelous vacations..and we stay home and live happily ever after with smaller tales to tell, fewer miles on our tires and bigger smiles on our faces.

Taking care of those who take care of others

Ok, the other day I was convinced to work midnight until noon due to someone's scheduling mix up. Now everyone makes mistakes and I am willing to help out my coworkers when the need arises if I can. I had been fighting a cold and with April vacation I have had less than adequate sleep so a 12 to 12 shift was not ideal. 11:30am I could not hold up my head and could barely see the medication I was giving. Dangerous right! So...I go home and stayed awake so I could see my children....because it was my birthday and that's what makes me happy on my birthday. So now I am sick with lymph nodes the size of golf balls under my chin, a fever and coughing blood. But can I take a day of to nurse myself? No. Can I go to a doctor to get medication for myself? No. Why in the world not you ask? Well because the skinflint that owns the company I work for doesn't give sick time or health benefits to the staff of his facility until they have been there 90days and I am at 80 days! So I spend my days caring for those with pneumonia and holding the hands of my dying patients but can't even get a cheap discount antibiotics because I cannot afford to privately pay for the ten minute appt with my doctor to get a generic antibiotic! Why not give those who care for others the resources to help them stay strong and healthy enough to continue to care for others???What a system. Where is universal health care. God I would take a pay cut as a nurse to know I wouldn't work shorthanded or work sick ever again!

Monday, April 20, 2009

Too nice to blog

Well Spring has sprung and with the warm weather I just couldn't be bothered to sit and blog. Yesterday after working all night I still could not come home and sleep because it was GORGEOUS outside. Plants are blooming out in the yard and being our first spring here there is just so much to discover. So much is buried on the debris of last fall that I have to dig around and see what is popping up underneath. So far I have found daffodils and day lillies out by the stonewall with the row of forsythia a bright gold behind it and what looks to be periwinkle along the back fence. There are various rose vines here and there. Trees are budding and blooming everywhere. It took some pruning to get a few of the trees and shrubs to look respectable. They had begun to wander and looked unruly after a year of no one keeping them under rule. I felt the sun baking my skin just slightly and it felt so warm and toasty and left me with a nice pink glow. Kids are on vacation this week and I plan to recruit them like miniature park rangers to help with the rest of the spring clean up outside :)

Thursday, April 16, 2009

The Computer Age

All throughout history there are stories of the older generation not understanding the younger generation. In the sixties it was rock and roll that baffled and confused the elders. What was this noise, this rebellious sound that echoed like a cry of freedom that streamed from every muscle -car window and high school gymnasium? Today the stange new language is quieter but no less foreign. Instead of screaming, "turn that racket down" parents today seem to be saying "turn that computer off!". Our children have become glazed over like zombies living in a virtual world, playing games where they live out virtual lives and communicating with people they have never seen and having virtual relationships. My teenage son speaks to me in a language that I cannot decode. OMG, LOL, etc etc. He speaks not only the language of text messaging but the language of his obsession the World of Warcraft this foreign chatter invades our dinner table conversation. "Hey Mom, I respecked today!" "My boomkin is beast!" "My level 87 tank was nerfed!" What in the world? How could I possible connect with this creature who lives in a world entirely separate from me. Tonight after many days of the kids asking if they could roast marshmallows out in the fire pit I agreed. The spring zephyrs all week have made that impossible until today. I figured they would be excited. Finally some time to hang out on my only night off after a beautiful spring day. A clear cool spring evening to go out and sit by the fire. Not so! I get "Hey Mom can we do the fire now?" At 3:30pm? Why I ask. The response, "I am meeting my guild in a dungeon at 7pm and I can't be late!" The virutal world apparently has deadlines. It has schedules and time lines and appointments. Now after living many years in the real world I can say that if I was choosing to escape into a virtual fantasy world night after night it would not be one with deadlines, schedules and demands upon my precious spare time. Nor would it take me from the joy of spending what few free moments I have with the family I work so hard for. So in an effort to connect with my child, I have disconnected the keyboard.

Wednesday, April 15, 2009

Splish Splash

Well today the warm weather inspired me to attempt to fix our hot tub. I know wah wah poor girl with a hot tub. We moved into our house that had been vacant for about a year in February when the entire yard, hot tub and pool were covered in about two feet of snow! We were told by the realtor it needed to have the heater replaced and were given the part by the owner. Now most folks would have called the nearest spa repair place....not us. We're broke from the move and well as nice as it is to have a hot tub, its not nice to pay to fix it. We're intelligent people I thought. We can do this. How hard could it be. Hmmmm, 1. out old heating element, 2. enter new heating element, 3.reconnect. 4.Find power source, 5.fill tub turn on. And then the moment we've all been waiting for, the whoosh of the jets that would signal that sweet massaging relief would be close at hand. And then it happened... up from the ground like a geyser we have a new fountain on our deck. Yep fountain, the kind you see at Disney world with the ten foot shooting arcs of water spraying in every direction. Maybe I should just figure out a way to time it to music and strobe lights and go with it. It will be like a giant water feature on our deck. One small little "o ring" seal turned a beautiful spa into the worlds biggest sprinkler. Note to self...always call a professional because sometimes a repair guy with plumbers crack is a genius.

Tuesday, April 14, 2009

Its the Little Things

Life is good! After a 10hr overnight shift full of chaos and pending death. (I'm a nurse so its not an exaggeration!) I drag my tired bod home discouraged, exhausted and entirely wanting for nothing more than my pillow and I walk in the door to find my dog ecstatic to see me and my man painting the living room at 9:30am after getting all the kids off to school on his own just because he knows how happy it will make me ;) Unconditional love of a man and a dog. It's the little things that make it worthwhile. A little breakfast, a little Melatonin, and off to my lair for a much needed rest.

Monday, April 13, 2009

Deja Who?

Working the overnight shift can be disorienting at best. Today I received a call at work from home stating, "Hey, Umm, the kids have school today. I thought they were on vacation. One of the buses just went by."
Ok, I thought so my daughter missed the bus, but my son's was yet to arrive. Great I thought! Working nights, I sleep like some vampire, my life depends on the bus arriving, the children leaving and silence descending upon my domicile. So needless to say school vacations are not kind to my slumber. So two kids out of the house, one who attends in another district still on vaca, one homeschooled who will whine not to do his work since there is still one at home to district him. Thankfully the two at home are as nocturnal as am I staying up all night to attend to their addiction to the soul stealing game of World of Warcraft. I am safe, there will be silence, and I can awake to the sound of the door slamming as my daughter's bus arrives and the sun streaming in the bedroom window through the layers of fabric draped upon them to block the light from my lair.
But no! Not today. The day does not go as planned. I awake a half hour before my daughter slams the door, to find my better half still missing. The two teen night raiders are just rousing themselves to the shower after waking at 1pm! He left six hours ago I think. No note! There's always a note! No indication of his plans to return. Our only working vehicle missing from its oil stained spot in our driveway. I think of the past week and the times when he has had trouble breathing and chest pain and think "Dear God, what if he dropped dead at the Walmart?" My better half being a large (and by this I mean huge) statured man. I picture the manager getting one of those scooter things and attempting to scrape him from the cold beige tile. Then he calls for backup! The forklift arrives and they carry him barely breathing to the customer service desk and desperately search for the AED. They ask what they can do to make him comfortable and he calls for some Mt.Dew and is revived! Dew runs through his veins like lightening and he is recharged, renewed and home to meet the bus! This scenario plays through my head as I dial his cell and hear him answer and say "settle down I'm around the corner . I was home, I even came in and spoke to you, you answered me. What did you think happened to me?" I blush and remember the previous dream sequence and snicker. "Oh nothing, I thought you'd been out all day and I was glad I woke on my own to meet the bus in case you didn't make it back" I say.

Eggstra Special

Hunting eggs Easter Sunday with Jake was Eggstra Special. Of course it wouldn't be Easter in New England if it were not freezing cold with whipping wind and a yard that looks like a pro football game occurred during a down pour just moments ago. It also wouldn't be April without the springtime colds and giant gobbs of green boogers that accompany them. So after much nose wiping, and dressing Jake in what appeared to be Eskimo gear we head out to search for the elusive plastic egg filled with goldfish crackers. Yes thats right crackers! Jake being autistic has his idea of delicious and sadly it does not include chocolate, or ice cream or any of the other tasty treasures that make his mother's hips so comfortably soft. After witnessing the contents of the first found egg Jake's eyes lit up. Could it be that some great being descended upon the front yard and deposited my life sustaining food choice??? Each egg found after that was pure nirvana with the ever nonverbal Jake mustering up a "Wooooooooooow!" Of course not trusting that the universe would be consistent Jake opening each and every subsequent egg to be sure the contents would be the same. This continued until the green goo eminated from his nose reached his chin and he was sufficiently shivering. And with that a basket full of opened eggs, a heart full of pure joy, and a mouth full of crackers, Jake's egg hunt was complete.