Epilepsy, Autism, Rare Disease – How Special Needs Change a Family

How Epilepsy, Autism, Rare Disease have Changed us All

Any diagnosis will change the family dynamic, because you are dealing with more than a word – you’re dealing with the loss of a dream in some ways–yours, the dreams for your child, the ones you had about your family.

But you gain so much more.

The special needs family begins without diagnosis, but with love

Diagnosis and the Special Needs Family When Jim and I met each other, eighteen years ago, we hit it off immediately, it was definitely an opposites-attract kind of thing. Why?

Because where I love to meet people and make connections, where I enjoy being around lots of different people … Jim can’t stand it. Undiagnosed at the time, Jim is today diagnosed with Aspergers, which explains some of the severe social phobias we dealt with in those early years.

The thing is, I didn’t fall in love with him because he was shy and quiet, I fell in love with him because he is so sensitive and he truly cared about me. I met him after a particularly hard time and he helped me heal. I called him my angel–he made the bad things slip away for a while.

And then we got married, and we suddenly were expecting our first baby, and we had all these soft, late night conversations as we thought about what our kid would look like, what kind of future we wanted him (I think Jim always wanted a boy first, I never admitted it but I wanted a girl) to have, and how we were going to prepare for that future.

We were full of grand plans and hopeful dreams. And then, within moments of delivery, our world changed. We were no longer looking at a distant future and planning on dreams of that future–we were looking at it.

Diagnosis is never fun – the Rare Disease Roller Coaster

Within moments of Bobby’s birth, the room was way too quiet as I heard one nurse tell another that there was something wrong with my baby’s eyes. I always remember that moment as the life-changer. Never had we been more concerned with the here and now, never had we forgotten so many of the future hopes and dreams, as we did during that first month of Bobby’s life.

My first time holding my baby, my sweet and beautiful baby boy with the head full of hair  and soft, fine skin, I wasn’t counting the fingers and toes, I was watching for him to open those eyes so I could see what was wrong with them. And when he finally scrunched his little face up and those eyes opened a little further I could see … something. His eyes were almost completely white across the iris (the colored part of the eye).

I remember that first month as a frantic whirlwind of appointments and disappointments. No one could tell us why our baby was virtually blind. After almost a month to the day, we walked into the specialist’s office and sat down, thinking it would be like the many visits before. But it wasn’t.

You see, that day we received our first diagnosis. Our son had a rare disease, disorder, syndrome, something. Something was wrong with him, and we weren’t expecting that. We were expecting surgery, and even preparing for blindness, but a rare disorder? A genetic one? How … why … the answers to questions I couldn’t even formulate would begin keeping me up nights, anxious to find answers.

Fast Forward – Diagnosis through the years

I used to think it wasn’t possible for one family to experience so many diagnoses. I found out, over the years, that it is indeed possible.

Child by child, we added more diagnoses, answers to developmental delays and vision problems, eating difficulties, muscle tone … answers that ended in some diagnoses, and more questions. Instead of enjoying those early years, spending time learning to be a mother, I was learning how to be a therapist, caregiver, nurse, wife, and mother all in one. Instead of simply being a daddy, Jim was dealing with the same, added to the guilt of carrying the genetic condition linking the boys’ various conditions together.

We’ve dealt with the Axenfeld-Rieger Syndrome, autism and epilepsy with all the guys, while we’ve dealt with other neurological disorders, severe vision impairment, cerebral palsy, dyslexia and way too many more to list.

Epilepsy, Autism, rare disease … oh my!

But, really … What do so many diagnoses mean? What have they meant for our family? Do you want to gut-wrenching, keep-me-up-at-night truth or do you want an inspiring song-and-dance?

The easy answer:

The many diagnoses our children have, the many different special needs that they share, don’t define them, and are both a blessing and a challenge at the best of times. They’ve made me appreciate the little things in life so much more. I’m so blessed.

The gut-wrenching, keep-me-up-at-night truth

While the easy answer is truthful, it isn’t all the truth. Why? Because the truth isn’t easy. It isn’t pretty. It’s downright painful sometimes.

  • The truth? Is that I worry, endlessly, about whether I’m a good enough mother, if I’m good enough to be their mother, would someone else (someone w/more money, more energy, more time) be able to help them more?
  • The truth? Is that Jim and I have struggled, sometimes daily, to keep our marriage alive. Those differences that drew us together make running this kind of special needs household difficult. Jim’s severe shyness means I do most of the specialist appointments and advocacy. While he is supportive, he can’t handle it. My issues with depression and fibromyalgia mean that some days I nap, or I go through the day in pain.
  • The truth? Is that our house is a minefield of doors torn off hinges (Logan), bathrooms I am NOT wanting a guest to ever lay eyes on (Bobby, visual impairment, need I say more?), and housework that never gets done (who has the time?)
  • The truth? We have billing agreements with folks who know us better than some acquaintances … or we at least talk to them more often (I kid you not! Totally true *grin*). Bills? Are never-ending and hard to pay when you can’t work outside the home (Jim’s disabled and I always end up losing my jobs to one emergency or another)
  • The truth? We live from one crisis to the next, whether that’s a seizure or a meltdown or learning issues …

But we don’t talk about these things most of the time. This is what multiple diagnoses do to a family, how it affects a special needs family to constantly be in a state of stress and flux … but we don’t talk about it. Because the truth is, that it isn’t that simple either. Why?

It’s all a matter of perspective. If I take the time to tell you all the above, and I fail to mention that there really are good days, even weeks … then I have missed an important part of the puzzle. It shouldn’t be easy to define what a special needs family is … what the additional needs of our children have done to us all.

Because there are some benefits, blessings, and joys that come from having children with special needs as well.

  • True appreciation for every little smile or action, milestone and step
  • An understanding of the fragility of life
  • The smile or laughter on the face of a child you were told wouldn’t laugh
  • The first step of a child you were told would never walk
  • The first time your severely autistic little boy tried to hug you in his own special way (we call them “Bobby hugs”)
  • That second after a seizure has ended and your child takes their first breath, all over again
  • Snuggles that are rare but filled with giggles and sunshine

Having children with special needs has made this family tougher, stronger, and harder to beat. But it has also shown us that the world isn’t always out to get us. We’ve experienced incredible moments of true giving, blessings in the form of gifts, favors, food … empathy. Our world is different, of course, because we’ve had three kids with special needs.

But different can be a beautiful thing sometimes. And that’s something our amazingly awesome kids have taught us too.

What about you? Do you have a child, or children, with special needs? Have you found that the truth isn’t so easy to define in your house either? Have you dealt with epilepsy, autism, rare disease, or something else? 

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Katrina Moody

Katrina Moody

Graphic Designer, Wordpress Addict, Blogger at Kat's Media & More
I'm a special needs parent before just about everything else in life, but also a passionate advocate for my three boys and husband, who all have a bit of awesomeness about them. Awesomeness = Axenfeld-Rieger Syndrome, Autism, Epilepsy, Dyslexia, Cerebral Palsy, and more. It all adds up to some awesome kids and an amazing family.
Katrina Moody
Katrina Moody
Katrina Moody

Latest posts by Katrina Moody (see all)

  • http://littlemammasaid.blogspot.com/ Em

    Oh Kat, I relate to so very much of what you have said. You are an amazing woman and mother and wife! Thank you for being so honest and for showing that it isn’t always easy but that the difficulties aren’t the whole truth either. Thank you for showing me that it’s Ok to have days when you feel you can’t cope-it doesn’t define us and doesn’t mean we love our children any less. X

    • http://katscafe.org Katrina

      Thanks Em – I’m usually very upbeat. I’m actually a very positive person. And normally I am able to handle everything just fine … but reality is a monster when you have children with special needs. And reality is something you deal with all the time. Every day. Late at night. You get the good with the bad, and recognizing that both are possible, necessary, and okay to experience and talk about, are important for staying sane and dealing with the complex emotions that come from this kind of stress. Thanks so much for visiting and I’m so glad you found the post applicable to you as well. *hugs*

  • http://www.savette.com wendy

    Kat you are absolutely amazing how look after your family and do everything required. I hope someone looks after you , you are a true inspiration. I hope people read this very heartfelt post, i along with others will be able to relate to it.

    thank you

    wendy x

    • http://katscafe.org Katrina

      Aw – thanks Wendy! I’m nothing all that amazing, though I’ll agree my guys are! This was a harder post to write, for some reason. Maybe because we become so used to telling folks what they want to hear that we lose a bit of ourselves in the process.

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  • http://www.amberrisme.com Amberr Meadows

    No matter what the dianogsis is, they are wonderful, special kids who just have more complicated needs that are met by wonderful, loving parents. Big Hugs!

    Happy Halloween ;-)

    • http://katscafe.org Katrina

      Absolutely – our kids are amazing. And the parents I’ve met are pretty darn amazing as well. *hugs* I count you among them! We had a grand time, hope you and yours did as well!

  • http://www.skybadger.co.uk Naomi

    Hi,
    The same. It’s bl@£dy horrid sometimes! It’s the endless fighting for his rights, for his school, to keep his friends. I wouldn’t even talk to my husband about this, but we’re getting worn down.
    Max’s great and so is his little brother-almost forgot about him again! The future (if he has one) is too damn frightening, so instead I’ll stick with the fight. From the outside I’m as tough, happy and positive as they come-inside…well that’s a very different thing. Smile-fake it till you make it.

    • http://katscafe.org Katrina

      Isn’t it amazing how worn down you can become, too? I never thought it was possible to be this emotionally tired sometimes. My guys are remarkable and extraordinary, and awesome … and sometimes thinking about the future scares me a great deal as well.

      I’ve become very good at ‘putting on the face’ – the one everyone else sees. But sometimes I feel like it’s chipped around the edges, and I just want folks to understand that no, it isn’t easy, it isn’t like a novel – – you don’t get do-overs and take-backs or to choose another adventure. But what you do get, the sometimes hard to describe greatness that you do get … makes up for it. Most of the time, and enough of the time.

      *hugs* I get that.

  • http://specialmomspace.com Michelle

    I know your struggle and in spite of it all I know that you nor I would not replace them for anything in the world.

    My CJ’s diagnoses are cerebral palsy spastic diplegia, epilepsy, mental retardation, developmental delays. WHATEVER. Like you said it doesn’t define them.

    • http://katscafe.org Katrina

      It’s hard trying to explain that to someone who hasn’t seen the good with the bad. The diagnoses might be many … but in the end our kids are ours to love and cherish in spite of them all! *hugs* to you!

  • Lisa Hirsch

    Hey All,

    I need advice on support groups, virtual or otherwise for parents of special needs kids. I have a twelve year old, deaf/ autistic/ incontinent son. I have asked myself many of the same questions as Katrina? I think somebody goofed. How did such an amazing, joy bringing, frustrating, challenging, child with so many confusing and awe inspiring, let’s not forget the sometimes self injurious behaviors, end up with me a, single bipolar woman with normal pressure hydrocephalus. Christian has a deadbeat and me. I have a strong support system through my sister and my mom, but they have no more experience with autistic children than I do. Never mind ASL. That is very difficult to learn and my son all but refuses to sign anyway. My main objective is to keep him from hurting himself or others( my 5 year old nephew lives with us, his mom too, whole other topic about too many heads of household) but I digress. At best I can keep him safe and calm, but isn’t there more? Isn’t it possible for us to thrive rather than just survive. I’ll take any advice.

    • http://katscafe.org Katrina

      Lisa … I feel for you!

      It is so easy to feel like we aren’t the perfect person for our child (children) because at the end of the day we are only human, and we have the limitations that being human brings to the party. I’ll let you in on a secret – I’m diagnosed bipolar type two. I don’t really advertise that fact, mostly because the doctors aren’t really in agreement about it, and I don’t know if I agree with it or not. I do, however, struggle with depression and I do have fibromyalgia. I have, often, faced that “I am really not the best person for the job” kind of thought.

      One of the primary problems I have found in finding any support group is that my children’s problems stem from multiple diagnoses – so usually one support group just doesn’t cut it. How can it? I can recommend a great support group for parents of kids on the autistic spectrum and I think you would find it a great place to find some support and information online. I would also suggest finding a group for your son’s deaf-related issues, as they might add a different set of symptoms, concerns, and more that you might not find addressed in a group dedicated to those with children on the autistic spectrum.

      I have a few friends in the deaf community here locally and would be happy to put out some feelers as to good online support forums you could try. If you would like.

      I highly recommend the following Facebook Group (are you on FB, if not let me know and I can refer you to the group owner’s site directly): https://www.facebook.com/groups/realityautism/ I do know of a few other good groups on FB if you are interested. In any case, welcome to the Cafe – you’re welcome to stop by anytime, and please feel free to send me a line on FB as well – http://fb.me/moody.mommy

      *hugs*
      Kat

  • Lisa Hirsch

    Thanks for your quick response. It feels good to not feel so alone. I don’t know much about bipolar two. I have the first type the type that’s hereditary. Just one more thing to worry about passing on to my son. I also feel responsible for causing his deafness through cytomegalovirus. Sorry I didn’t mention that first post. I contracted CMV first week I was pregnant and my son developed against the virus. Nobody will say he’s autistic because of CMV because that would mean they know at least one cause. That’s just one other part of parenting I can’t seem to get right. How do I discipline the person paying the bills, even if he doesn’t know he’s paying. How do I stop guilt parenting when it’s my fault he’s deaf and I’m the one who picked him a deadbeat dad? It’s not like every movie and stuffed animal he wants is going to change his situation. I can’t stop buying him stuff. Anyway. You are so brave for putting yourself out there to show others it’s possible no matter the circumstances. I won’t give up. I am on FB. You can look me up if you want. I live in North East Philadelphia(Mayfair) we have a brand new school opening near me, but there’s a list already and Christian is on it somewhere. My major area of concern is nights and weekends. School days seemed to be covered by his school team. I even had an idea for a rec center for families with special needs, but I can’t form a board because I’m broke and so is everyone I know. That’s why I was hoping to create a Community Arts and Recreation center for families with special needs to promote financial freedom through the arts. That’s where I hit a snag. I also wrote a screenplay in which I copied and pasted my and my son issues to fictional characters. BTW. Sorry I forgot to review your blog. I got so sucked in by the subject matter I forgot why I started reading it initially. Great blog for other parents with special needs kids. I can’t speak for typical parents, but you got me as a fan. Thanks again, Lisa

  • http://www.annalaurabrown.com AnnaLaura Brown

    Kat, this is such a well written post. I’m single without kids but I have high functioning autism myself and I look at what my family went through for me when I was young and it’s never easy but I really admire my parents for all they did for me and now I am committed to doing whatever I can to help parents who need some hope and support.

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  • http://www.facebook.co.uk kara jacobs

    i have epilepsy and autism too so i love your story and i live with my mummy and daddy and they love so so so so much and

  • http://1000giftideas.com/ Naxysch

    Katrina you are truly marvelous! You are so full of inspiration! How you have put together your family, how you are handling all their little needs, its just amazing! I have a friend whose elder brother has some rare disorder, the mother really loves him and takes the best care of him but the siblings never want him around! It becomes so difficult for the mother to make all her children happy and the family is mostly in trouble… I think they really need to see how well you are doing it all!

  • http://potsdisease.org Andy

    Such an inspiration and great post.I can sympathise, I myself have an autonomic nervous system rare illness called Postural Orthostatic Tachycardia Syndrome, which is a debilitating illness, not sure if you have heard of it?