Let's Get Real

Special needs parenting does indeed have its gifts.  It teaches us patience and resilience.  It forces us to be better people.  It forces us to find our voices, so we can advocate for our children. It opens the door to friendships with people we may never have ordinarily crossed paths with.  Every time our child learns something new, the pride we feel is immeasurable. No "milestone" is taken for granted.  We get huge  amounts of joy from the smallest accomplishments, things that other parents may take for granted.

But there is another side to the story. One we are sometimes shamed into not sharing. One we are supposed to "suck up" and hide away, because some people are uncomfortable with hearing our pain.

So let's get honest. In many ways, special needs parents get a bad deal. My husband was fired from his job (with a Disability Services provider!) largely due to taking too much time off to attend Sophie's appointments. They refused to accommodate part time work. I've had to take more than two years off work (and am at possible risk of losing my job)  because of depression and anxiety largely resulting from a traumatic birth, chronic sleep deprivation in Sophie's early years and high stress around Sophie's extra needs.

Make no mistake...I am FULLY aware that there are plenty of parents who have kids with much more devastating issues than Sophie. But I'm sick of minimizing what we go through. And today I'm going to be brutally honest.

As parents to a child with special needs we fight. All the time. We fight for access to services. We fight to be heard. In Sophie's first year I was accused of being "paranoid and delusional" by one pediatrician, an "over-concerned" mother by at least three other doctors, and other unmentionable things by more doctors than I can remember. All because I thought my daughter had a genetic condition, and they thought I was imagining it. They were wrong, I was right. They shamed me and made me question myself, because they would not look outside the square.

A doctor at the sleep clinic at our local children's hospital refused to listen to my opinion that Sophie's chronic waking and screaming were pain related. He said she was waking because I was depressed and we had poor bonding, and if I was just prepared to let her cry it out then she would sleep. Would you let a child in pain cry it out? I wouldn't. We healed her pain (through the GAPs diet) and she started to sleep through the night.  If we had listened to that doctor's advice, she would still be living in pain.

Special needs parents fill in paperwork. All the time. We can't just enroll our kids at daycare or school or ballet classes or soccer and be done with it. We have to have special meetings, and write up information on our children's challenges, educate the teachers and carers in how to help our kids. Check in to make sure that our instructions are being followed. A teacher at Sophie's special needs kindly fed Sophie gluten (which she can't tolerate, and the teacher knew) and she had the hide to tell us she "figured it wouldn't kill her". Sure, it didn't, but was the teacher the one who had to get up in the middle of the night when Sophie was screaming in pain afterwards? I think not.

We have to hold our children down while they scream as they have blood drawn. Cradle them in our arms as they are anesthetized. Cook special meals for them because their systems can't tolerate a "normal" western diet. Console them when they tell us they asked all the kids in their class if anybody wanted to come to their place to play, and they all said no. Console them when, at just four years old old, a child in their class spat on them. We have to trek around and sort the wheat from the chaff when it comes to medical professionals and therapists. We question ourselves ALL the time...are we doing enough? Are we doing too much?

We have to teach our kids basic skills that come naturally to "normal" kids. We have to watch on while they are rejected by their peers. We have to face the shame of seeing that our own kids are so much braver, more positive and more courageous than we are.

We love our children without doubt...deeply, endlessly, honestly. And at the same time we sometimes hate the things we have to do every day. We hate the endless list of doctors and therapists. We hate the fear of wondering when the next thing in the list of issues associated with our child's diagnosis is going to raise its head...for us, with Kabuki... epilepsy, kidney failure, chronic immune deficiency, hearing loss, joint replacements and more. When our daughter complains of sore legs and asks to be carried, we have to wonder whether we are indulging her, or whether she is having legitimate joint pain associated with her disorder. We have to face the stares of parents who watch us carry our child into the water while she is screaming...because they think we should wait until she is ready, and we know she will only ever be "ready" by being pushed past that barrier of fear. We berate ourselves for looking too far into the future, and question whether we have looked far enough into the future to provide the assistance they may need to help avoid some issues.

As grown adults, who have been used to being financially independent for years, many of us (yep that's us) have had to accept financial help from our parents. Which we are so utterly extremely grateful for, but that makes us feel small and beholden and inadequate. We won't deny Sophie the therapy that our parents have helped us to afford, but we feel guilt that we can't do it all ourselves.

Generally we minimize it all. Almost all of the time. We write and talk about the positives, the pride, the joy. Because the average person doesn't want to know, they want to tell us to be positive. And because we are SCARED that we will lose friendships if people know that these deep and dark thoughts are within us. And yes, positivity is needed, and a great thing to strive for. And positive reinforcement is invaluable. But sometimes we just want to be heard. We want to cry for our children's difficult life path. We want to be held in our pain, and allowed to process it, rather than being told to deny it.

I love my daughter. More than words can say. I hate my weakness. And here, today, I am choosing to share it. Not for pity, not to be judged. Just in the hope that other special needs parents might not feel so alone.  And perhaps that parents without children with special needs may read this, and get some insight into our lives. Special needs parents can't hold it in all the time. We are human. We are not "special people", chosen because we have "special gifts to offer". We may perhaps end up being "special", because we have to travel this path. But it is not one I would wish on anyone. Parenting is a challenge for anyone. And sometimes, as special needs parents, we need to grieve and moan and cry. Not all the time, that's not what I'm saying.  But if we are heard, and understood...it is THEN that we can accept the well-meaning advice to "get on with it" and "see the beauty" and fully move into the role we have been called to fill.



Check out Kathy's blog if you would like to follow her journey with daughter Sophie.

I Hate the Term 'Special Needs'

I hate the term "special needs." I mean, hate it. Can't stand it. I don't want my son to be labeled as such, and I refuse to be called a special needs parent.

That label is reserved for sick kids-- severely sick kids. My kid isn't sick. He's not. He's... not. Right?

That was me, from the minute my son was born, and we knew he was different. My husband could see his right arm, and his smaller, out-of-proportion-from-the-rest-of-his-body, sweet hand flailing about as the nurses cleaned him up after my c-section.

He whispered, "There's something wrong with his hand," and leaned his forehead against mine as I lay on the operating table, slipping in and out of consciousness from the extra dose of anti-anxiety meds I suspect the anesthesiologist pushed through my epidural just then.

Those few days in the hospital were a daze. It didn't feel like we had just welcomed a precious new addition to our family. It felt wrong, off... like a dark cloud hovered over us in the recovery room. The nurses could feel it; they could sense the shock we were still in.

Once we took him home, though, it seemed to get better. To have him occupy the spaces we had been anticipating seeing him in for so long-- in the swing, on the changing table, in his crib with the carefully selected bedding-- it changed our perspective, slightly. The shock still hung in the air, but it was wearing off. The hand would be dealt with, but in the meantime, he was still our precious newborn, and that giddy, new parent feeling began to emerge.

Twelve days after he was born, right as he was starting to get a routine down, we noticed how fast he was breathing... nearly three times that of a normal newborn. We rushed him to the ER, and from there he was flown to a children's hospital two hours away.

It was then that they began taking inventory of all the things wrong with our baby we didn't know he had.

• One non-functioning cystic kidney.


• Two heart murmurs, one of which was quite large and disturbing.


• His small hand.


• A large inguinal hernia.


• An immature 7th nerve, resulting in paralysis of his left eye and eyebrow.


• A partially-collapsing airway.


• Aspirating his foods, which required the installment of a G-button.

All of these anomalies together, according to the geneticist, gave him a diagnosis of VACTERL Association. It is not a chromosomal or genetic abnormality, rather just a name for an observation of body system malfunctions that are often seen together. At this time in the research, it's thought to be due to environmental factors, or lack of blood flow at a certain point of development. Thankfully, thankfully, it's not often associated with any mental deficits.

It was in the middle of discussing with a nurse about us needing a medical supply company for his g-button equipment that I realized... these are special needs. This is what a special needs conversation sounds like. This is his life, and our life, now.

Special needs is not derogatory. It doesn't mean he's defective, or wrong. It doesn't mean he'll be special needs forever... or maybe it does. It just means that right now, there are some things his body can't do on its own-- like, close his left eye, or swallow formula, and he needs extra help, from doctors, nurses, specialists, and his parents.

It's not about the label. It's about getting those extra things, whatever they may be, to help your child grow and thrive.

Jackson is a special needs baby. I embrace that now, and it doesn't scare me. And, my husband and I are special needs parents. New ones, nervous ones, but also determined.

However, above that label, Jackson is our baby; he's the final piece to our family. He, along with his sister, complete our lives.