Easter 2011

Good Friday

Actually, she did take a few

This is an addendum to the Fun in the Sun post below. Ciara was able to get a few pictures at the Arboretum before her camera batteries died.

Another morning at the Zoo

Brendan and Mom spent the morning at the Los Angeles Zoo to kick off what is sure to be a rather boring Spring Break for the lad. It's been about 12 years since we didn't have any little sisters with us!

The zebras and Brendan go way back. He was happy to see their return.

Don't you love my attempt at taking a picture of the two of us? Clearly my arm isn't long enough.

Following the Zoo we picked up our Easter ham, went to the grocery store for a few items, and got some lunch. A good day :o)

Fun in the Sun

A couple of weeks ago, Ciara spent the day with Aunt Eliz and Eileen aka Little.
They had a picnic together at the Los Angeles Arboretum.
Ciara's camera batteries died, so no pics.

Áine and Amy

I hadn't taken a picture of Miss Áine Clare and her speech therapist, Amy, in a while.
They were too cute to resist today.

Crying over spilled tinkle

Yes, you read that correctly. Let me start off this blog by stating the obvious. I am a woman of faith. I am a blessed woman. I appreciate all that the good Lord has seen fit to bestow upon me. I cherish my husband and my children. I have never questioned the myriad special needs that fill our home and our lives. I treasure the very few friends I have. I value those who walk their talk. Now that all that is out of the way, I feel I must put into words as some living, breathing, tangible manifestation of what comprises my day to day living over the past 18 years. Don’t ask why, just accept my inexplicable reasons for needing to do this. It’s not a pity party. Not by a long shot. I don’t know quite what it is, but it’s something I feel the need to do and should you wish to read no longer – the few of you who read this blog – no worries. Just know that I thank you for not judging. And I thank you for knowing the true me and for knowing that while I need to share this now in my low spot, it is a far cry from how I usually am. I am strong and I was blessed with an inordinate amount of patience for many things and an inordinate amount of impatience for many trivial things (hence my more than typical amount of road rage). I am compassionate beyond measure and empathetic, but sometimes there are periods when life is just a little harder to manage than I would like and the call of a nice warm bed of my own is strong and I don’t think that’s too much to ask for, but it seems that it is.

The love for my children goes without saying. I appreciate every milestone they are capable of reaching. They make me laugh, they make me cry, and they are undoubtedly three of the cutest redheads to grace this earth. (Hubby, too.)

In the past 18 years, the following diagnoses have hit my family… moderately severe classic autism, epilepsy, bipolar disorder, panic attacks, asthma, OCD, developmental dyspraxia, visual and auditory hallucinations, intractable epilepsy, intra-uterine stroke, hemiparesis, neurological visual impairment, dysarthria, post status hemispherectomy, growth hormone deficiency, mood disorder, impulse control disorder, failure to thrive, food allergies, heart disease, diabetes, hepatitis C, Barrett’s Esophagus, fibromyalgia, Wenkebach arrhythmia. I think that’s all the diagnoses. It’s enough to make someone think there is some Munchausen by Proxy Syndrome going on. Rest assured, there isn’t.

In those 18 years, there have been multiple hospitalizations for varying reasons… miscarriage, feeding tube placement, botched feeding tube placement, second feeding tube placement, removal of second botched feeding tube placement, recent third feeding tube placement, orthopaedic surgery, heart attack, stent placement, meningitis, lengthy EEG stays, sleep studies, multiple psychiatric hospitalizations. Then there have been no less than 10 calls to 911 resulting in ambulance rides to the hospital. There have been multiple trips to the ER for stitches for slicing a finger with a knife, stitches for splitting a head open during a seizure, casting of a challenged leg, casting of a broken heel (twice!) because of banging it against the wall one too many times.

There have been the multiple reactions to now known food allergens. There has been the hit or miss of finding the right formula over the last 10 years.

There is the newfound fun of finding the right incontinence (and BM) protection after years of being able to wear child size products. We have been through 10 different brands at this point and have yet to find one that works. This of course results in no less than 10 soiled leggings every day, multiple sheet changes, multiple loads of laundry every day. And don’t even get me started on the realization that this child bound to pull-ups will, in a few years, start getting a period. PMS, cramps, etc? I cannot even think of it. And yet I do.

We have been through more couches, beds, carpets, chairs, doors, and mattresses than I can count because of either excessive urination, defecation, or the gentle giant thinking he is 3 years old and “plopping” on the furniture. None of it fixable and all of it needing to be replaced. This doesn’t come cheap. And I am not talking about normal wear and tear that a normal family goes through.

We also have had more televisions, computers, VCRs, DVD players, radios, CD players, CDs, computer software, video tapes, and DVDs broken than there are stars in the sky.

Every food cupboard must be locked and I was finally able after all these years to find an effective lock for the refrigerator just last week (thank you Amazon!) after years of middle of the night raids. And I don’t mean someone getting the munchies or girls at a sleepover “raiding” it. I mean honest to God actual clearing out of all food in the refrigerator multiple times a week.

Two of my children cannot sweat. Therefore electricity costs are high in our house. And when the power goes out, it’s not a pretty sight. Mass panic ensues for a multitude of reasons.

There were years of crushing meds just so and hiding it where no one could find it, but it was always found. There were years of making enough grilled cheeses to feed a village, but it had to be a certain brand of bread and a very particular kind of cheese.

In the past 10 years, there is LITERALLY not one minute of the day when all three children are asleep at the same time. Not one. And I am not talking about parents of newborns or toddlers who have the sheer audacity to bitch and moan and whine that their child only sleeps a few hours at a time. What the hell? Didn’t you READ the baby books? That’s what babies do. It’s not what 18 year olds and 10 year olds do. And your problem will pass. Ours won’t. Get over it.

And while I’m at it, I don’t want to hear from parents of toddlers whinging that their two year old isn’t in big boy or girl undies yet. You can vent away when they are 18 and 10. You can vent when you still change upwards up 12 pull-ups a day. You can vent when you deal with non-baby poop multiple times every day. I have spent years wiping non-baby poop off walls, windows, floors, carpets, wood floors, bathtubs, out of hair and fingernails.

There are the tens of thousands of hours of various therapies over these past two decades including speech therapy, occupational therapy, physical therapy, augmentative communication therapy, feeding therapy, aquatic therapy, music therapy. There has been an almost equal amount of hours spent at hospitals, ER, doctor waiting rooms, clinic waiting rooms, therapy waiting rooms, on hold with insurance companies, attending doctor appointments, going to IEPs, going to IPPs, calling regional centers, following up with doctors, therapists, school personnel, regional center staff, insurance companies. Hours spent convincing schools and/or programs to give your child a chance.

The constant, never-ending, bone tiring above and beyond the norm vigilance for their safety and their health.

The locked doors and windows and the harnesses. I will never forget the summer we moved to our current house 13 years ago. I was pregnant with the middle kidlet and the oldest kidlet was at the height of his lengthy elopement phase. (That’s the fancy word for being a runner.) He broke through nailed in screens to run out of the house and across the street multiple times. We had to install locks on every window and we had no air conditioning. Lovely.

There was the time at one of his last schools before being homeschooled for five years, that he escaped from the classroom despite having his one-on-one aide seated next to him, ran the length of the school, out of the unlocked gate and across 5 lanes of traffic on one of the busiest streets in our area just so he could go to the car dealership which had booming announcements over the P.A. system which he could hear in his class. And the school staff had the gall to tell me he knew what he was doing because he was laughing. Heaven help me.

There have been many times I have been told I am over protective by various members of various school districts, but my fave by far was the first year Brendan was diagnosed and had to enter the school system. He was just three and I was informed that they would bus him to and from school. A trip that would take me 15-20 minutes by car, would take 90 minutes each way via bus because of other pick-ups and drop-offs. I politely declined. Over-protective Mom that I am. I wouldn’t put my neuro-typical three year old on a bus for 90 minutes with strangers twice a day, but I am overprotective for putting my son who is non-verbal, autistic, and epileptic on a bus? Color me overprotective then.

The stares and whispers which bothered me 15 years ago for a snippet of time, go by ignored. Or if I must address them I remember the words of my then sweet 3 year old (now my sweet 12 year old) who said to the gawker in the grocery store, “Do you have any questions about autism?” She stunned the woman into silence. I almost did a happy dance right there in Vons. I understand my children are peculiar at times. But then again, aren’t most of us? (Like my across the street neighbor who has to be in early seventies and insists on wearing nothing but very small bicycle shorts as he tends to his yard.) Get your glance in and move on.

Some things (most things) you can laugh off like the tinkling on the floor of the Pasadena Courthouse by the littlest kidlet while her brother unknowingly loses all his basic civil rights to his parents and the decision by the littlest kidlet to become a partial nudist (the lower half) during her Spring Break this week.

Some things you can’t laugh off. Like getting beaten by your son in the throes of a panic attack right in front of a massive medical building while your two year old cowers behind the stroller which holds her 6 month old sister and it’s over 100 degrees outside and your minivan won’t start and no one, NO ONE, stops to help despite screams for help. Sigh. That was a rough one.

There was the near fatal reaction to a medication that resulted in the oldest kidlet’s loss of most functions including walking, sitting, eating, two psychiatric hospitalizations one which included the policeman stationed outside our door at the ER in case my trembling, unable to walk or stand boy went ballistic.

There was the “behaviorist” sent by the regional center many moons ago who greeted me at the door to my home by saying, “My name is Tiffany and I studied to be a dog trainer.” I promptly sent Tiffany packing. The sad thing is that years later, at the last public school Brendan attended, a teacher with what he thought were impressive initials after his name told me that there wasn’t much difference between how he trained his own dogs and how he worked with his autistic boys. And it was there that my precious boy was called a “whale” by an adult aide. The cruelty of the world is mind-boggling at times.

Our house is filled with chronic health issues. Not the sort of temporary diseases where Churches and communities and friends rally around to raise funds for treatment or offer respite until treatment is over and/or the person is cured or recovered. We have the chronic issues that don’t work like that. We have the sort of issues that aren’t wrapped up neatly. Respite is a virtual impossibility at this point because of the various ages and stages and sizes of our kidlets. I almost need 2 or 3 people at once to care for them and that’s just not going to happen. My children are physically demanding on the body.

I am constantly being given advice from the well-intentioned non-readers of my blog, who strongly encourage me to contact local agencies because “help is out there”. Really? Where? Just recently our regional center bestowed 30 hours a month of care for Aine. Sounds like a lot, eh? It comes out to one hour a day. I can literally get nothing done during the hours she is home. And she is home a lot. So I haven’t pursued the one hour a day. It’s just not worth it to me to let a stranger in my home and explain Aine to them for an hour a day. And now I find out that because she has a feeding tube which is used solely for medication delivery by Mom every morning and every night, she has to have a nursing respite worker. Nice. All I want is a baby-sitter like most other families have to come hang out and play with her. I am not asking for the moon. And even if utilize the hours, I still can’t leave the house because there are still two other children to care for. Because, you see, that respite worker is only for Aine. Makes a lot of sense, doesn’t it?

Now that Brendan is 18 years old, we have entered a whole new world. He has only 3 years left in school and then that it’s. No more services on that end. His current “socialization” program won’t take him after August 6^th of this year. What’s a Mom to do? He cannot live his adult days with us. He needs a life beyond us. When we die, he has to know some type of existence away from us.

I cannot even delve into the issue that the middle kidlet has no outlet whatsoever outside of this house. So not good. She is becoming a hermit like her Mom which is something I never wanted to happen, but between finances and time I don’t seem to have any option. And she desperately wants to go to a particular high school after she leaves 8^th grade next school year. In fact it’s all that is getting her through her remaining time at her current school. I have to figure out at what point I tell her it may just not happen. The choice would be her tuition or the 28 prescription co-payments. What a choice.

I have one child who hasn’t slept more than two hours a night in 14 months and is immune to all means of sleep medications.

The boy will only sleep sitting up which causes swelling in the legs, older sister can’t sleep in her own bed in her own room because of the non-sleeping younger sister. I am on the couch to monitor the night activity.

And yes I am grateful to have beds, a roof over my house, and sometimes sufficient food. That’s not the point.

I am fatigued to the bone. My spirit is fatigued, my mind is foggy. The daily stressors of my life at times feel like they are going to drive me straight to a nervous breakdown. At least I could sleep in my own bed in the psych ward, right?

Collectively these challenges financially level a family and come very close at times to leveling a person.

I mean no offense in this stream of conscious blog to those who have helped out over the years. Those who know me will not find any offense to be taken. And I suggest that if you are reading this and taking some offense, you may not be one of those people who know our family.

I don’t know why I felt the need to post this publicly on my blog, but I did. I may delete it at some point, who knows.

If you’ve made it this far thank you for taking these words for what they are. An expression of my feelings at this time and this place. Nothing more, nothing less.