Monday, January 23, 2012

Bee-ography Monday

Monday, Monday, Monday... brings another bee-ography. This week's story comes from mommy to one handsome little bee, Andrew:

Andrew was born on Wed, July 24th, 2002. My husband and I were told we had a less than 1% chance to get pregnant, so we adopted. We adopted Andrew 18 hours after birth in New Orleans, LA. Andrew was considered a very healthy child from birth. After the adoption we found out his birth mother had never had prenatal care. We were able to bring Andrew home to Tennessee from Louisiana on August 6, 2002.

On September 5, 2002 we took Andrew to the doctor for a little cold and my mother noticed his head started to get bigger by the day. Once we took him to his pediatrician he immediately took a flash light to his head and noticed he had Hydrocephalus. We were instructed to go directly to Vanderbilt Children’s Hospital to the neurology office and speak with the neurologist. The neurologist immediately scheduled Andrew for a shunt placement on September 6, 2002. We had the shunt placed and after many days in the hospital to recover we got the most horrifying news we could have ever gotten. We found out that our son Andrew was living off of his brain stem and had very little to no brain. I begged for a transplant but they said they do not do that type of surgery here in the US and if I did go through with such surgery that he would not survive. The doctors also told us that Andrew would not be able to do many things such as walk, talk, smile, etc. . . . The doctors told us Andrew had 12 to 15 months of life. The name of Andrew’s diagnosis is currently Hydrocephalus and Hydrancephaly. 

Andrew has gone through many surgeries to give him the quality and the quantity of life we hope for. Each surgery has proven to help him each time.

 Andrew needs 24/7 care. Andrew is tube fed only and has been since he was 3 years old. He takes many medicines that I have to keep a book on and keep current. He has frequent seizure activity and is wheelchair bound. We move Andrew from side to side and to his belly. We have applied for 8 years for help on medical care for Andrew from the government and been denied each of those 8 years. My husband and I live paycheck to paycheck. When you think things will get better medical wise it seems there is more and other expenses along with it.

When I was young I never knew that there were many special needs children. In fact, I ran into them rarely. When we had Andrew everything changed in our life. The way we live, how we live, the adjustments that need to be made, where we would live and how we were going to take care of our beautiful little Angel on a day to day basis. 

When Andrew started school at the age of 3 we looked at a basic public school, a private Christian school and Harris Hillman Special Ed school. After much research we fell in love with Harris Hillman. When we walked into this school it was everything Andrew needed and all the kids were like Andrew. The teacher/student ratio was 3 to 7, they had nursing care, and you’re PT, OT, Speech and Vision therapies. This school was amazing. My husband and I cried leaving the school and thought this was the perfect place for him. We lived in Rutherford County at the time and had to live in Davidson County to get him in this school. The same day we called our realtor and had the house on the market. We sold several months before school started the next year. We thank God for that. 

You can say Andrew has changed our lives and for the good. Andrew has showed us so much about love, patience, and most of all brought us closer with God than we had before. 

We never even thought about blaming God for Andrew’s condition. We felt God gave us Andrew for a reason and knew we would do whatever possible to take care of Andrew. Andrew is a true blessing in our lives and wouldn’t change it for the world.

The things that doctors told us about Andrew that he would not do that he does now is smile and live as long as he has. In fact, a few doctors that we no longer see because of their unsympathetic and personal views told us that “we should let him go and not hold on” and “that we don’t need to do this surgery because he won’t live long enough to need it”. I am very disappointed at these doctors and because of God we have Andrew living today.

Andrew enjoys music, love, touch, and books read to him. When Andrew hears a familiar voice he will smile real big. He knows his mom, dad, brother and some friends and family. It is amazing on what he can remember.

Andrew is currently 9 years old and we live everyday with the worry of how long we have with him. Each birthday party for each year is something very Blessed to have so we celebrate it with all our friends and family because we don’t know how long we got and we are going to cherish them all.

Sunday, January 22, 2012

Bee-Worthy Share

I read... ALOT. I have an online file chocked FULL of stories, information, and lovely readings to share. Here is one I stumbled upon this morning; one that as parents to children with extreme medical necessities, living with hydranencephaly, we can all relate to. For those of you who cannot fathom, please read this... it is mostly for you:

Choices and words of wisdom (ahem)
Posted on January 18, 2012 by Musings and Chatterings...of a busy mind.

I am a Mum. A mum who is 40 years old, who is getting more grey in her hair, who is carrying a couple of extra stone. I’m a mum who loves red wine and chocolate, who loves to chat to friends, who loves to read and write, cook and garden. I have one child, my adored daughter Fionnuala who is 4. Sometimes I can scarcely remember a time when she wasn’t in my life. She is my absolute pride and joy and at times also a complete headwrecker. Just like most 4 year olds!

Fionnuala has a significant level of disability. She cannot walk yet or talk although she is very vocal and has a couple of words she uses correctly. She crawls and bumshuffles and can pull to stand at furniture and cruise along. She can get up and down the stairs on her own. But she is still in nappies and can’t use cutlery. She has regular appointments for physiotherapy, occupational therapy and speech and language therapy. She goes to a local pre-school two mornings a week and in September she started at a special needs unit 2 days a week. That unit is 23 miles away and there is no transport available, so that’s more driving for me.

Her condition inevitably means she requires more hands on care than other children her age and she has lots of appointments for various therapies and to see various medics. I have never been ashamed to admit that at times I find it very hard, somedays overwhelming. But most of the time I can cope fine.

None of the driving and travelling to collect nappies or make appointments or pick up equipment bothers me, its just a part of our lives now. Since Fionnuala was born – in fact since we got the bad prenatal diagnosis over 4 1/2 years ago – we have found that our outlook on the world has changed. Inevitably we have greater awareness and understanding of disability issues, of the problems that people with disabilties face trying to access services and just to live in this increasingly busy and stressful world. Like so much else, this has become part of our lives.

But one of the things I have NEVER gotten used to are the probably well-meant but ultimately hugely annoying comments like “God only sends special children to special people”, “‘You must be a saint, I couldn’t do it”, “She was sent to you because you can cope with it”…… and many more of the same type.

Now, I fully accept that most people – thankfully – have no idea what being a parent to a child with special needs is really like, and I hope they never have to find out. BUT what do these people think they would do if it happened to them? Hmmm? Leave the child in a hospital? Hide away from the rest of the world? I’m sure that these kind of instances do happen. But I bet they are extremely rare.

My real gripe in all of this is the notion that I’m some kind of saint for managing Fionnuala’s condition and needs and appts. Eh no. I’m a mum, a busy, sometimes frazzled, sometimes impatient, occasionally snappy Mum. I’m a mum whose heart breaks a little bit every day when I see another challenge for Fionnuala or when I dwell on what her future holds and the life choices that will not be open to her.

Like every parent of a child with special needs, I do have days where I feel unable to cope. And at those times in particular it really doesn’t help when people go on as if I’m doing something superlatively wonderful – I don’t have a bloody choice.

I’ve ranted about this to friends before and some have asked me what suggestions I would make to people who don’t know how to respond or react to a child with special needs. Well, all I can offer are these few thoughts- and this is really aimed at casual acquaintances and people we meet out and about (not at friends who know us better):
Don’t tell us parents our situation is a tragedy (yes, that word has been used).
If you don’t know what to say, thats fine. And its ok to just smile or to say that you don’t know what to say.
If you have children with you and they want to know why the little girl is in a wheelchair, don’t shush them and look embarrassed. Just tell them that she needs help getting around. If they want to come look at her wheelchair with the big orange wheels thats ok
If you see a harassed, stressed parent whose child is screaming or having a meltdown, please don’t tut-tut and mutter something about bad behaviour. Our children can’t help it.
A smile and making eye contact does wonders to lift the spirits of a parent who might be feeling especially sad or worried or tired that day.
Above all else, accept that people with special needs are part of the community. Don’t go out of your way to make a big fuss, but please be understanding that we might need extra space in a coffee shop, or that if you occupy a disabled parking space “because I’ll only be a minute” that means we might have to drive a good bit away from our destination to find a space we can easily use.

And thanks for taking the time to read this x

Friday, January 20, 2012

Flashback Friday: Bee Inspired

Flashing back... this post, in particular, felt like I had just written and shared it. Yet, it has definitely been nearly 2 years since I had. Enjoy!

Another Great Read
By Ali Harper, Small Portion of a Life's Journey, February 4, 2010

After a couple of weeks of meeting new people while trying to gather new necessities for my 'lil man on this crazy journey with hydranencephaly, I needed to slow down and read something from someone who has felt the same way I have felt... especially after defining my son's condition to far too many people who act like I MUST be pronouncing it wrong as I spell it out slower than I would spell it for my 4 year old to write down. A few days of struggling to not knock out the possessors of the curious stares... I know he's amazingly adorable in his blue glasses, but let's be a bit less obvious ok? The moments of pondering whether to tell the other curiously inquisitive mom the truth about his age, that he is nearing 20 months and no he cannot sit or speak and definitely not run around with your child who is 13 months old (can you sense my tad bit of frustration?). I found this at the Moms in Common Facebook Fan page (which is no longer in existence), it is:


My friend is expecting her first child. People keep asking what she wants. She smiles demurely, shakes her head and gives the answer mothers have given throughout the ages of time. She says it doesn’t matter whether it’s a boy or a girl. She just wants it to have ten fingers and ten toes. Of course, that’s what she says. That’s what mothers have always said. Mothers lie. Truth be told, every mother wants a whole lot more.

Every mother wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin. Every mother wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly. Every mother wants a baby that will roll over, sit up and take those first steps right on schedule. Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class. Call it greed if you want, but we mothers want what we want.

Some mothers get babies with something more. Some mothers get babies with conditions they can’t pronounce, a spine that didn’t fuse, a missing chromosome or a palette that didn’t close. Most of those mothers can remember the time, the place, the shoes they were wearing and the color of the walls in the small, suffocating room where the doctor uttered the words that took their breath away. It felt like recess in the fourth grade when you didn’t see the kick ball coming and it knocked the wind clean out of you. Some mothers leave the hospital with a healthy bundle, then, months, even years later, take him in for a routine visit, or schedule her for a well check, and crash head first into a brick wall as they bear the brunt of devastating news. It can’t be possible! That doesn’t run in our family. Can this really be happening in our lifetime?

I am a woman who watches the Olympics for the sheer thrill of seeing finely sculpted bodies. It’s not a lust thing; it’s a wondrous thing. The athletes appear as specimens without flaw – rippling muscles with nary an ounce of flab or fat, virtual powerhouses of strength with lungs and limbs working in perfect harmony. Then the athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler. As I’ve told my own kids, be it on the way to physical therapy after a third knee surgery, or on a trip home from an echo cardiogram, there’s no such thing as a perfect body. Everybody will bear something at some time or another. Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, medication or surgery.

The health problems our children have experienced have been minimal and manageable, so I watch with keen interest and great admiration the mothers of children with serious disabilities, and wonder how they do it. Frankly, sometimes you mothers scare me. How you lift that child in and out of a wheelchair 20 times a day. How you monitor tests, track medications, regulate diet and serve as the gatekeeper to a hundred specialists yammering in your ear. I wonder how you endure the praise and the platitudes, well-intentioned souls explaining how God is at work when you’ve occasionally questioned if God is on strike.

I even wonder how you endure schmaltzy pieces like this one saluting you, painting you as hero and saint, when you know you’re ordinary. You snap, you bark, you bite. You didn’t volunteer for this. You didn’t jump up and down in the motherhood line yelling, “Choose me, God! Choose me! I’ve got what it takes.”

You’re a woman who doesn’t have time to step back and put things in perspective, so, please, let me do it for you. From where I sit, you’re way ahead of the pack. You’ve developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule. You can be warm and tender one minute, and when circumstances require intense and aggressive the next. You are the mother, advocate and protector of a child with a disability. You’re a neighbor, a friend, a stranger I pass at the mall. You’re the woman I sit next to at church, my cousin and my sister-in-law. You’re a woman who wanted ten fingers and ten toes, and got something more. You’re a wonder.

~author unknown

Thursday, January 19, 2012

Bee-Worthy Share

There is a poem going around the special needs communities on Facebook that is just beautiful... though, unless you are faced with the situation of parenting a child with complex medical issues, you cannot really and truly relate. I know this because oftentimes I'm told how full my hands seem and how difficult my days must be... neither really are.

Rarely will a parent to an extra special little one, regardless of how long they bless the earth with their presence, say they wish they had not had that child despite the difficulties... the blessings that come with parenting special children, far outweigh the negatives. I, for one, am eternally grateful to have been chosen as Brayden's mommy... and I can only hope that he feels the same, equally blessed to have me as his mommy. 

This poem speaks just that:

I Still would have chosen you - By Terri Banish

If before you were born, I could have gone to heaven and saw all the beautiful souls, I still would have chosen you... ... ... If God had told me, "This soul would one day need extra care and needs", I still would have chosen you

If He had told me, "This soul may make your heart bleed", I still would have chosen you

If He had told me, "This soul would make you question the depth of your faith", I still would have chosen you

If He had told me, "This soul would make tears flow from your eyes that could fill a river", I still would have chosen you

If He had told me, "This soul may one day make you witness overbearing suffering", I still would have chosen you

If He had told me, "All that you know to be normal would drastically change", I still would have chosen you

Of course, even though I would have chosen you, I know it was God who chose me for you.

Tuesday, January 17, 2012

Toy-FULL Tuesday

Another week, bringing you toy/equipment ideas that are tried and tested by our own little bees... and proven to be huge hits.

As this week my own household has welcome four new household members with fins, I was reminded how much Brayden LOVES aquariums. We have always had memberships to the local aquariums and frequent them often...

...even small, decorative aquariums are quite intriguing for him. It's been on his wish list for a while now, but with moving almost yearly it hasn't been gifted yet...

Our handsome little bee Ethan and his mommy, who is also our foundation's secretary and web design extraordinaire, shared an amazing alternative to a real fish aquarium.

Here are some easy-care options for the fish aquarium experience (click on the title below the image & the order window from will open up):

Product Details

Product Details
Underwater Garden Motion Lamp

And the ultimate wish list item if you're feeling like you have the time to spend in caring for a true aquarium (not to mention the money to invest on this, with a whopping $6500 price tag):

Monday, January 16, 2012

"Bee"-ography Monday

It's everyone's favorite day of the week, with another installment of our "bee"-ography series. This week's story comes from our bee-angel Sarah's grandmother, Peg:

It all started in June for us. We were on vacation when we received a phone call from our son Ben who told us that Courtney's mom had called him with news that she had given birth to a little girl and he was the dad. He was frantic, didn't know what to do. They wanted her put up for adoption. Here Courtney was 27 going on 13 with mom and dad calling the shots. We told him we would stand behind what ever he decided.

Ben went to the hospital, took one look at Sarah and wanted her. 

So we, Ben's family, had to wait until Courtney, Sarah's mother, was discharged before we could see her. After 2 days we got the call we could finally meet our granddaughter. When myself and Charlie, Uncle Andrew and Kate got to the hospital all the nurses were waiting on us to see the family of this wonderful father who didn't want his daughter put up for adoption. They put us in the family room until they brought her to us. 

They brought us this little package and my hands were shaking so bad I could not hold her, but she was the prettiest little girl I have ever seen and she was ours for what time we had with her. I felt blessed that God gave her to a family who would love her.

After a week she was taken to Perrysburg Hospice Center to stay. Since her momma had signed a DNR (do not resuscitate) which meant they were unable to give a shunt, they didn't think she would survive past a month. We were there to love and care for her as long as we could. After working 8 hrs we would drive 1hr and 20 mins every day to spend time with our granddaughter then drive home and do it again, day after day. 

She beat the odds! Sarah lived longer than expected and the day came after 3 months that Ben got to bring her home. After training we knew what meds to give and at what time. Between the 3 of us she would have 24hr care at home, family also kicked in and helped. Sarah came home and she got all the love a parent and grandparents could give a baby.

But after about 6 weeks Ben found a job in Dublin Ohio in what he had gone to college for and had to move, so Sarah had to go back in hospice care again. It was a sad day for us. Losing the opportunity to come home and hold her for as long as I wanted as grandma would be the death of me. 

Sarah was so special. She knew who was holding her, she knew when you talked to her and played with her, and she just new she felt loved. She sensed it all from family and friends who spent any time with her. So she went to Defiance Hospice Center and since we have to work, there was nothing we could do to avoid this sad day in our lives. But it was the happiest day in their lives with death all around them. They would receive a package of joy.

Their first baby ever, Sarah was very welcomed. All of the nurses were great, they all loved her while giving us our space when we visited her. Since Sarah didn't have a shunt the older she got the more her head swelled up and discomfort grew. When she had a bad day or night they would have volunteers who would come day or night to do what ever they needed. When it came to Sarah everyone wanted to rock her or sit by her bed and rub her or just hold her hand.

Everyone loved her there and many times she could be found at the nurses station or someone was always somewhere holding her. In a place of death she brought joy.

I think it was around the first week of December when Sarah stopped eating and we had a couple of close calls with her body clearly shutting down. Sarah went 2 weeks without eating and on December 24, 2009, when we always have Christmas, we took it to Sarah since she could not be home with us. Sarah had a tree in her room. We brought ham, scalloped potatoes, corn bake, rolls, and cookies which brought our family and the staff together as a family for our Christmas. We had enough food to feed everyone who was there and for who ever came in, even a man whose wife had come in to a closed cafe. Also, Father Tim, who had visited Sarah every single day.

It was December 25, 2009 that we got the call Sarah had died. We all met, said our goodbyes, and I held her for forever. All of the family was there: Great Aunts, Great Uncles, cousins Andrew and Kate... everyone Sarah knew was there once Sara grew her wings and flew home.

Friday, January 13, 2012

Flashback Friday: "Why doesn't he have to..."

From my original blog, Small Portion of a Life's Journey, we are flashing back 2 years ago with the following post. While I wrote this so long ago, this topic is still of strong resonance in my life. Juggling normalcy for my family while living quite the opposite of a life hasn't proven easier, but instead we've conformed to a different definition of normalcy.. our own. The following post is extremely long, but also an extremely worthwhile read if you have other children in your household:

Why Doesn't Brayden Have to Do That?
By Ali Harper, Small Portion of a Life's Journey

Hydranencephaly, or any terminal or not-so terminal diagnosis in a family, affects all involved and not only the person (or in my case, child) involved. I know the emotions I feel as a mother to a child with extra special medical needs, and am even coping better with the roller coaster of emotions that guide me through my days. What about the rest of the people in my household, especially my two daughters who sacrifice in many ways, or my husband who spends many hours outside of the home to financially support? I struggle as the mother of two "typically" developing children, and one little one who requires much more time and energy. It is difficult to find the balance in making it work fairly for everyone involved, sometimes it is next to impossible. And although I find solace in the thought that my girls are experiencing struggles that will only strengthen the positive aspects of their individual characters, I worry that they will also feel a sense of resentment towards the circumstances they are growing up in.

Here is a noteworthy paper addressing these issues from a family psychologist's perspective, and an actual study she did on this very topic (can you tell that I am a psychology major?):

Mother, father, siblings and children adapting to disability
Elizabeth J. Bruce. Ph.D. MAPS. MNALAG. 

Daunting is this parenting experience - for while fending for their children's optimum development, many parents themselves are operating in an emotional abyss. What is the reality of the family ? What are the realities of its members? Originally, my doctoral study in the early 90's confirmed the presence of a type of chronic grief which paralleled this parenting experience. But examination of the scores on an instrument commonly used to assess traumatic symptomatology convinced me that it was more complicated than this - some parents, particularly mothers were experiencing traumatic symptoms. Specifically, these mothers were unable to psychologically process this life experience. Fathers were sometimes experiencing the same dilemma but experiencing it differently. With some mothers and fathers at their emotional limits, it was not surprising that a child who was disabled would tell me that he or she could not tell their parents what was happening to them at school because "they [the parents] would get too upset". A similar story emerges for some siblings. Their parents did not know how frightened they were of their sibling who had all these strange behaviors. The title "Elite Parenting" is borne out of the need to recognize the enormous psychological challenge parents have - namely, to recover from their trauma and manage their chronic grief so that they are as able as possible to hone a skill base to parent their children. From this perspective, this lecture examines the realities of mothers, fathers and their children and introduces some possible important directions for early intervention.

Before I started my Ph.D, I spent a long time with a large literature base devoted to stressand parenting a child with disability. Research on levels of stress in caregiving is one of my bugbears. One does not need to be Einstein to surmise the stress involved in parenting a child with disability. Of greater interest to me was a very small literature base to do with parental grief - a few parents, some - come academics wrote about grief "for the idealized normal child". This made sense. One might surmise this also. However the principles of grieving related to bereavement were being virtually translated indiscriminately across to this particular experience of grief. Parents emotions were being "jammed to fit" a stage model of grief which Kubler- Ross (1969) had extrapolated from observations with the terminally ill.

A paucity of academic study around grief as a construct allowed this practice to continue. The upshot was that parents who did not move sequentially through to a stage of "acceptance" were considered to have "unresolved grief" - an almost pathological connotation ! This was despite two important articles introducing the term "chronic sorrow" by Olshansky as far back as the 1960's. Basically, Olshansky argued that parents "should" endure a realistic sorrow - it would be a 'given' psychological undercurrent of parenting a child with disability.

My thesis was spawned from this fledgling field of literature. It emerged from a belief that grieving for parents of children with disability should be considered a 'normal' reaction to a "complicated loss" (Bruce & Schultz, 1992) and that notions of acceptance should be viewed as inappropriate - too tall an order. In fact I have never used the term acceptance with parents since a mother way back became extremely angry when I asked her about acceptance. Amidst her angry tears she asked me; " Why should I accept this ? It is unacceptable that this should happen to my child!" I agree - it almost feels disrespectful to accept such tragedy. And the same might follow for parents of children with disability. My work with parents centers around not having to accept- not having to "get over" their grief- instead we talk about what must be put into place if one is to "adapt" to this life experience. This shift seems important- but its timing is crucial- it must be an early rather than later shift in thinking.

Chronic grief- a normal condition
My PhD study was a monumental task. My husband formulated the study design - I would be out at night for three years interviewing families - I agreed ? What would I need to do to show that grief was a normal psychological condition for parents despite the age of their child. For 3 years I, with the help of a trusty colleague, Harry Zable revisited up to 60 families with varying ages of children (6 cohorts of children aged 3,6,9,12,15,18 - tracked over three years ) and talked to them about their lives - and they generously jammed into their unbelievably busy schedules, the filling out of the same set of measures each year ( Bruce, Schultz, Smyrnios, and Schultz, 1994; Bruce, Schultz, & Smyrnios, 1996) . What came out of this ? Grieving was academically shown to be an ongoing feature of rearing a child with intellectual disability - given the ongoing and dynamic nature of the loss - "entirely normal".

Partnerships at risk
Mothers scored higher than fathers on all measures to do with emotional distress in this study. This was not to say that fathers they did not cognitively take on board what had happened, for on a Wishing scale, there were no differences between mothers and fathers wishing for "what might have been". What seemed to be happening, although one could not clearly decipher whether this was about just about male grieving style, was that mothers were being 'forced 'to face their loss. It was symbolized in every normal child with whom they came in contact. But not so for the fathers. They were at work.

Mothers were being overdosed to their loss, and fathers under-dosed. In fact they were sharing different realities. Dad would come home at the end of the day, and Mum would drop the bombs which had been threatening and hurting her throughout the day. Needless to say, without aligning these parents realities, the Mum, herself, becomes the bomb which sometimes needs to be avoided. And along these lines, I have seen several men who do not want to go home purely because they have been under-dosed on the loss and have not incrementally learnt some psychological coping strategies. Marriages and partnerships at risk!

Trauma and grief
One of the instruments I employed in my study was the Impact of Event Scale (Horowitz, Wilner, & Alverez, 1979). It has been commonly used as an instrument to measure traumatic response, and in the assessment of Posttraumatic Stress Disorder. Essentially it measures intrusions, often re-enactments or images which represent the traumatic event, and avoidance- the need to ward off such images. At the time I had been writing copious Victims of Crime reports - teenagers in Pub brawls, assaults - even black eyes were being considered potential for this relatively new diagnosis of PTSD.

It had been staring me in the face - and it could have been surmised - but it was caught up, hiding behind all this focus on stress. There was trauma here. Putting together some of the parent's responses to diagnosis and their life, the scores on the Impact of Event scale and the criteria in the DSM-IV for the diagnosis of Posttraumatic Stress Disorder.... ["... Traumatic events that are experienced directly include serious injury experienced by a family member - or learning that one's child has a life-threatening disease. The likelihood of developing this disorder may increase as the intensity of and physical proximity to the stressor increase..."(p.424;DSM-IV)] , it became apparent that in some cases, parents had been traumatized by their child's condition.- grieving as a process had not even started.

Attachment at risk
Grieving is a complex psychological process of adjusting to a new version of the world and one's place in that world. It is made more complex if parents must turn full circle to embrace a condition in their child which has been traditionally feared. This process of working through is actually constricted if one is traumatized. Individuals are generally 'lost' in this process. They operate on rote. Routines are a "can-do", but complex, emotionally demanding tasks are a "can't do". So how were these parents going to fare in their parenting. In most cases, parents had not even been debriefed. Mums and Dads returned home from diagnosis in an emotional abyss. How would an "attachment bond" suffer in the aftermath of this trauma.

At around this time, I began talking both individually and in groups with parents of children with disability. Groups of mainly mums and I, talked about grief, trauma and attachment.

For most mothers, their child represented a vague and frightening experience - a challenge like no other they had before. Some mums were suffering from the fear that they could not attach to their child, guilty that they could not "feel" for their child - and then overcompensating to try and hide a "numbness". Not surprisingly, a pall of silence would surround the mum who said that she sometimes wished her child would not make it through the night.

Parenting tasks at risk
Throughout this time I was seeing siblings of children with intellectual disability and autism. I was also seeing children with mild disability who were integrated into mainstream schools. Two things stood out. Both were being traumatized by their experiences and neither were able to debrief with their parents. Parents were emotionally overwhelmed and unable to take any more emotion on board. Not their fault - but lots of things were falling apart. Often I would be reeling off a number of things that could be put into place to a mother who was simply exhausted. Over time, optimism had incrementally seeped out of her. The fact that the sibling of the child with autism was traumatized by their brother was too much, too late.

The skill base of Block and Tackle Groups
Two years ago, I began my group skill- workshops for parents - 'Block and Tackle' groups. The skill base introduced in these groups gathered quite a bit of momentum from some work I did with elite athletes of the Victorian Institute of Sport. These athletes were being given a bucket-full of psychological skills to enable them to mount attacks on negativity, practice perfecting their approach to vaulting, debrief from losses on the running-track and grieve losses of identity should their athletic self have to retire from sport. All of this attention focused on the physical ability of one person.!

This skill-base should be given to parents. A notion of building a concept such as 'Elite Parenting" - actually respecting the extra distance involved for these parents seemed a useful building block.

"Block and Tackle" groups turn attention to legitimating the psychological condition which parents will necessarily experience, and then offering them a bucket-load of education and re-framing skills. Naming the psychological context which surrounds this life experience - calling it what it is - 'It is trauma. There is chronic grief. This is normal" is an integral start.

In fact, it is this very realization which allows parents for the first time to let themselves off the hook of guilt. For when we talk about the serious psychological adaptation which is challenging them, the fact that they "are traumatized- that they should be grieving" - suddenly, this parenting experience can be reinterpreted. Specifically, it is reinterpreted from a personal failure in "embracing" this parenting experience, to a respect for what they have been, and are endeavouring to master.

In respecting the grief and its hold, the skill-base begins. How will they process their emotionally grueling experiences so that they can parent this child and their siblings ? What must they learn to parent this child? How will they get their child to a point where he or she is set up- should anything happen to them? .

Conclusion and some outcomes
Recently in one of my Block and Tackle groups, I had been talking about a 40 plus woman who had come to see me. A relationship with a male-friend had just finished up. Her life at forty-plus seemed to be "running out, tapering off". She was not married, had no children and was in a job she disliked. Like many people these days, she was on anti-depressants. I asked her if it was worth looking for another job ? She replied "What's the point, I'm too old?" I asked her whether she might seek a friendship with a man- whatever ?." She replied. "What's the point, I'm too old. No-one would want someone this old !" I spent a terribly laborious session trying to help her find a road which led into her future. A group of Mums, and one (as always!) Dad in the Block and Tackle group were discussing what this parenting experience had offered them. One of the young mums with two boys with autism had no problems finding a word. The word was "purpose". Block and Tackle groups are about the coaching and harnessing of this purpose.

From all of this, some mandates for early Intervention might be summarized :.

1. Legitimate grief and trauma -
Early Intervention cannot be late with the task of debriefing and legitimating the emotional reaction to this life experience. Parents need to be aware of how grief and trauma subvert emotional feelings of attachment towards the child, love towards the spouse and the like.

2. Psycho-education
Mothers and fathers need to be alerted to the complexity of adaptation. Their learning of their emerging reality- life with a child with disability- must be aligned as closely as possible. From here the partnership has a chance to be strengthened.

3. Skilling
Parents need to be taught skills - about managing the chronicity of the grieving so that they can manage the emotional states of their child with disability and his or her siblings. Parents must be taught to set goals to delineate a life experience which often they feel has no markers.

4. Purpose needs to be harnessed and normalized
Parents need to be helped with a plan which can guide their parenting- Disability or not, any parenting is about developing a child who can survive without us. 

I didn't previously recognize the impact this circumstance would have on my two older children. I have always been completely open and honest with them about the situation from the beginning. When I was pregnant, they knew Brayden wasn't growing properly and may go to heaven before we got to meet him. This was sadly, better understood, at the passing of their own cousin to an unknown cause which led to her still birth *RIP Zoey*. After Brayden was born, they also were prepared for the notion that he may not get to come home with us. It broke my heart that not only I, but my other children, would have to say good-bye to him after meeting him. Now we have overcome the initial prognosis and shock, and come to terms with the idea that every second is a blessing and we don't plan for a set expiration date. My daughters know Brayden's fate, and we pray that God will keep him with us for as long as he is meant to be. They know that he may wake up as an angel one day, and although will be undeniably sad, they are okay with that.

Now that he is getting a bit older, living with hydranencephaly is a bit more noticeable aside from his looks alone. Children are wonderful, they don't notice the stares and glares that I do as a mommy. We have gotten those all along, and we faced confrontations from people living in ignorance head-on in a politely aggressive manner (when I indeed would have found greater peace in punching them out, then kicking them while they were down). But now the questions are beginning to be more difficult to answer. Global delays, more intense therapies, new equipment that looks fun and exciting to unknowing little girls, and more attention to be given to the little boy who is no longer a sleeping baby during long periods of the day. All of these notes make for an immediate focus on greater time management skills, for the purpose of squeezing it all in to a day in an equally effective manner that will benefit all parties involved :)

Here are some guidelines I am attempting to follow to be more successful in adjusting to a difficult family situation:

~Since my children are nearing the ages of 5 and 8, the details can be left out of the precise fate of their brother. There is no sense in getting too technical, so I keep it age appropriate when answering questions as they arise. I, at the same time, try to be proactive in addressing concerns or issues they probably don't understand from their viewpoint. I can't rely on their little minds to understand what is happening, or why, when I don't even have a grasp on that.

~I acknowledge the moments when they feel left out or even jealous. Although I try to include them in activities with Brayden, there will inevitably be those times when extra care is what he needs and they just cannot help with that. There are many things that they can do safely together, and even duties they can be put in charge of to make them feel of value in the situation. It strengthens the bond between them and their brother which isn't being formed through "typical" play, while allowing them to be included in caring for his needs as well.

~Since Brayden's older sisters are both little social butterflies in and out of school, they both have many friends in and out of our house. Kids are always inquisitive about any unknown situation they encounter, and will often ask sensitive questions. I encourage my kids to ask me anything, and am sure to help them develop a strong level of understanding of hydranencephaly and the differences that there are between them and their friends, and the little brother.

~Although I always address any questions, concerns, or emotional meltdowns as soon as I'm able, I also don't wait for them to always come to me about these issues. Once in a while, especially when they are displaying some erratic behaviors or an excess of meltdowns, I will talk to them about how they are feeling and why. Sometimes it concerns their brother and the challenges we are facing as a family, other times it is something as traumatic as so-and-so said they weren't their friend for this hour :) Either way, it is good to have an open line of communication...and I think they know it's perfectly fine to be upset, and to show their emotions. I know that they always feel better after addressing them....

~Although they are both eager to help, I never want them to feel obligated to do so. Caring for Brayden is not a chore to them, if they want to help they can and if they'd rather play with their friends then okay too! I never want them to be burdened by their brother's inabilities to care for himself or do the things the other children are doing.

~Since I know that Brayden requires extra care, and the girls are in school during the day, most of that extra care that can be done while they are away they never even see. More intensive therapies, doctors appointments, baths, stretches, exercises, and etc. are all done before they get home, leaving time for us to all do things together. This is a great opportunity for play therapy, interaction exercises, visual therapies, etc. (the fun stuff).

Brayden may not be able to run and play with his sisters as their friends' little siblings do, but he brings us a different kind of joy that cannot be explained. A greater understanding of differences...for example in this posting (this sounds like my own household, in fact):

by Patty McGill Smith,
Acting Assistant Secretary Office of Special Education and Rehabilitative Services U.S. Department of Education 

I have a daughter named Marianne. She is 14 years old and so pretty. Marianne may giggle constantly, and then sometimes grow very somber. She is a fantastic young lady of whom I am so proud. She plays soccer and basketball; she can cook and clean; and she has sensitivities far beyond her age. Several trophies line the shelf in her room, and she recently won a scholarship for high school.

Yes, Marianne can do all kinds of things, and she is in and out of love every other week. While so much she does is so normal, there are some other things about Marianne and her life that are unusual.

Marianne was three years old when her sister, Jane, was born. The next two years in Marianne's life are a blur in my memory. Yet, I can recall vividly what happened to Jane during that time. You see, Jane was born with a disability. We did not confirm her disability until she was 14 months old. Those first 14 months were filled with apprehension, concern and crying, and the fussing and fretting of a demanding little baby. The next 12 to 14 months, the months after the diagnosis, were filled with more concerns, confusion, distress, dismay, and heartbreak.

I wonder where Marianne was during those two and a half years. What was she thinking during that time and what was happening to her?

If you don't have a child with a disability in your family, you can't imagine the impact this event has upon the entire family. So much of family life -- the emotion, time, and concern -- is focused on the child with the disability. After that, parents are consumed with coping and survival. There is so much to think about: medical treatment, another opinion, insurance, money, weariness, and wondering why it happened to you. There just is never a convenient time to consider the Mariannes of the world.

It was difficult or impossible at the time to see the situations in which the siblings were being slighted. The slights were not intentional and there was no lack of love. When Marianne and her older sister, Patricia, were four and five years old, respectively, I enrolled them in dance class. This was one of the first realizations I had as a parent that they were not getting as much time, energy, and effort as their little sister with a disability. After that, I can recall making a conscious effort to change things. I remember how important it became that their costumes for the dance recitals were all that they should be. I remember sitting the children down and saying, "Jane takes more of Mommy's time and energy. It isn't that I love her more; it is just that she needs more. You see, she needs more car rides for her doctor visits and evaluations, and more time for her programs. So it ends up that she gets more of my time." Do you suppose that Marianne, her sister, and her brothers who were older were able to accept those kinds of ideas? I don't know.

I do know that at some point in those early years things did change. Gradually, all the children became involved in assisting with Jane's programming. It was great fun to see members of the family join in to help. When Jane began to respond to their teachings, the children taught all the harder. I remember when my oldest son, Mark, taught Jane to "give me five." I remember telling teachers that our household had become a household of speech therapists. "Watch my lips" must have been uttered a hundred times a day; everybody was trying to get Jane to continue to develop her speech patterns. All these things were done in a light and joyful way that made them lots of fun. I, however, look back and wonder if it was too much for them? "How was Marianne being affected?"

I think about other things, too. I remain amazed by the enormous difficulty of motivating normal children to do their best when so much time and effort goes into the development of the child with the disability. What a disappointment when the grades of the siblings come home and they are not all A's. You know they could all be A's, and yet, how do you motivate the normal children to work to their full capacity? I didn't know then, and I don't know today. Then there was the overemphasis on the accomplishments of the child with the disability. Were the accomplishments of the normal siblings similarly heralded? I don't think so. Yet, my Marianne and all the rest seemed to be happy children.

What about the resentment when Jane was learning tasks? It never seemed as though she kept up. Jane, as well as the rest of the children, had assigned tasks around the house and yard. Yet, wasn't it easier to get the older kids to do a job than it was to have Jane do it? I think so. What about the time I gave to teaching the older children skills? Was equal time given? I don't think so. I remember the summer we taught Jane to clean her bedroom. It had been Marianne's job to teach Jane the finer points of room cleaning, but Marianne didn't want to do it. Do the normal siblings become resentful? Does this resentment create other troubles? I think so. Will Jane ever catch up and be able to fully meet the family's requirements of its members? I don't think so.

Is having a child with a disability going to adversely affect the development of the children who have no disabilities? Each family needs to consider this possibility and work to avoid inadvertently hurting the ones we love.

Have I personally ever gotten an answer to this question? Indirectly, yes, for despite all the uncertainties, my children have grown and matured into adults of whom I am proud. However, Gene, my oldest son, gave me what was perhaps the most direct answer I am sure I ever got to an unasked question. When he left home for college, he wrote me a letter. In this "lonesome" letter, in which he expressed his longing for family and friends, he spoke of all his brothers and sisters. Of Jane he said, "... and Jane, well Jane is probably the greatest blessing to us in the world."

Did he mean that he was glad that she was born with a disability? Quite the contrary. He was saying that Jane and her needs had brought us together as a family. It was true; Jane had been a focal point around which we all rallied. We worked as individuals and as a family to help her. Jane had become a total family effort.

Over the years, as a family, and as individuals we have had many successes and some setbacks. Yet, we know none of us has to be alone. We know how to pull together as a family, to love, support, and share -- something we learned how to do a long time ago with Jane.

I can only hope that our journey along with Brayden produces the same outcomes as it did for Jane's family. May they have a greater insight on his condition and similar conditions, maturity from successfully coping with their brothers needs and the struggles he faces, pride in the abilities he has while recognition of the small things as well, loyalty toward the people they love, and appreciation for their own good health...may not one thing be taken for granted, health or otherwise.

There are also federal programs being established for the siblings, which was completely unbeknownst to me. Here are some of the opportunities available to siblings:

Like their parents, brothers and sisters appreciate opportunities to meet others who have had similar experiences, discussing their common joys and concerns and learning more about issues and services that affect their families. Understanding this, agencies are more frequently creating programs designed specifically for siblings by providing some of the following opportunities:

To meet other siblings in a relaxed, recreational setting. The chance to meet peers in a casual atmosphere has several benefits. First, it can help reduce a sibling's sense of isolation. Participants quickly learn that there are others who share the special joys and challenges that they experience. Second, the casual atmosphere and recreational activities promote informal sharing and friendships among participants. Third, the recreational setting helps make the experience rewarding to attend. If a brother or sister regards any service aimed at siblings as yet another time demand associated with the child with special needs, he or she may find it hard to be receptive to the information presented. Sibling events should offer activities that are personally satisfying for the participant, so that he or she is likely to attend in the future.

To discuss the joys and concerns common to brothers and sisters of children with special needs.
Siblings need opportunities, such as sibling support groups, to network. Through these discussions, siblings may realize they have many common concerns and experiences. These support systems can help decrease feelings of isolation and provide an opportunity for ongoing support. Serve refreshments and incorportate fun activities along with more serious discussions.

To learn how others handle situations commonly experienced by siblings of children with special needs. Brothers and sisters of children with special health and developmental needs routinely face problems that are not experienced by other children. Defending a brother or sister from name-calling, responding to questions from friends and strangers, and coping with a lack of attention or exceedingly high expectations from parents are only a few of the problems siblings may experience. Special events for siblings can offer a sibling a broad array of solutions from which to choose.

To learn more about the implications of their brothers' and sisters' special needs. Brothers and sisters need information to answer their own questions as well as the questions of friends, classmates and strangers. Siblings want to know how the disability or illness may affect their brother or sister's life, schooling and future.

To give parents and service providers opportunities to learn more about the common concerns of the siblings. Because parents and service providers often are unaware of the range of sibling issues, activities can be conducted to try to help them better understand "life as a sib." For example, a panel of young adult and adult siblings might relate what they appreciated in their parents' treatment of the children in their families and also what they wish their parents had done differently.

Wednesday, January 11, 2012

Bee-worthy Cause

After Joe and Ann Britz found their lives touched by the diagnosis of hydranencephaly for their daughter Carina, who joined the angels at the too young age of 21 months in March 2009, the desire to create a nonprofit organization in support of chronically ill children and their families at Akron Children's Hospital. 
If you would like to learn more and possibly support this organization and their efforts, please visit their web site at:

Tuesday, January 10, 2012

Toy-FULL Tuesday

Featuring a new treasured, bee-tested toy or piece of amazing therapy equipment every week...

This week, after being inspired by our friends Heidi and Junior at the Adaptions 4 Kidz blog, features I-Toys. Back in 2010 Heidi shared how much Junior loves his i-toys as they light up and interact with little to no involvement:

Some of our kids' favorite things include something soft/cuddly, lights & music... so if you can wrap those things up in to one thing, you have a winner!! 

Acase Black Diamond II 3D Ambience Dock for iPhone 3G 3GS 4 4S

The Woogie
There are hundreds of different interactive toys, from dogs to lights to strange little unidentifiable creatures:
Fijit Friends Newbies Figure - Deep Blue Mila -  Mattel - Toys"R"Us
Fijit Friends



I-Pod docking stations are a great option as well... since many are full of colorful lights with sound, and you can play your little one's favorites, and some of your own too! 

iPod Laser Light Show Speaker

Excalibur Photon Lightening Ball

And this one even rocks out along with the music:

KNG Animated Docking System

You can even stream pics of your family & friends, partnered with an aquarium affect:

iAqua iPhone Dock

Sadly, no bumble bee to be found... if you find one, make sure we are the first to know!