Friday, May 31, 2013

What I Want You to Know

I'm pretty sure you all have no trouble understanding that being a special needs parent can be tough.  Many of the ways our life is affected are perfectly obvious for all to see.  But I have been realizing that sometimes the biggest issues are the ones no one sees.  Or they see it, but interpret it as something else.  And just don't fully GET it.  And I know that those of you with special needs families in your life really do want to get it.  Those of you who care about a special needs child or their parents and siblings really do want to know how our lives work and how you can best be a part of it.  With that in mind, I polled some of the special needs moms I know and asked them, "What is the one thing you wish you could tell people about your life?"  The answers ranged from a few words to whole paragraphs, so here I will try to paraphrase the ideas as best I can:

1. Being a special needs parent can be very lonely.  As one friend put it: "Even though SN parents are usually surrounded by people - doctors, nurses, teacher's aides, therapists - we live a life of extreme isolation. It is impossible to care for our SN children AND nurture social relationships: belong to clubs, join sports teams, work full time, attend family functions, etc. Many of us have lost marriages, friends, family members due to the amount of attention and energy our children require.  Many of us have lost relationships because of fear, ignorance, or an inability to give as much as these relationships require because of sick kids, illnesses, doctors appointments, therapy, etc."  Seriously, when it comes to the amount of time that goes into maintaining our children's health, WE don't want to deal with it either.  We understand that the people on the periphery of our lives will sometimes make the choice that it is just too exhausting watching us be us.  But that means that at the end of the day, there is often no one left that we can turn to when it gets to be too much for US.  Blessedly, the modern world of virtual connections has brought many of us friends from around the world who are living our lives, but this does not replace a good friend with a cup of coffee and a hug.

2.  It takes us twice as long (or more) to do ordinary things.  Any parent will tell you that dragging the kids along to the grocery store makes the trip take twice as long.  So add in having to get a special needs kid packed and ready to go pick up a gallon of milk.  First, you have to dress the kid appropriately.  If your child is like Anabelle, who cannot control her body temperature, you need to think about the temperature both outside and inside wherever you are going, and plan the appropriate layers.  You also have to wait for the proper timing between feedings, med administration, catheterization schedule and (often med-induced) naps.  I know for ourselves, there is only a brief window twice a day when Anabelle can accompany us on excursions.  You also need to think ahead to where you are going.  Is it wheelchair accessible?  Is there anywhere to change a diaper?  And remember, this isn't necessarily a 10-pound baby you are changing.  You may be travelling with a 4'8", 75 lb 15-year-old who needs diaper changes.  Then you have to pack the supplies.  Traditional diaper bag, plus food and meds if you are going to be gone long.  Many of us also travel with oxygen tanks and suction machines.  Get the kid settled in the car and get the wheelchair secured in the trunk (except the fortunate few who have a wheelchair van).  And while those wheelchairs are technically portable, they are NOT lightweight.  I have friends who have thrown out their backs and given themselves hernias lifting wheelchairs.  Then, once you get where you are going, you need to unload it all and push the wheelchair, plus a shopping cart throughout the store.  Your 10 minute trip to get milk just turned into over an hour.  


My trunk packed for one afternoon at a friend's pool

3. We appreciate offers of help, but please ask us what would be the most helpful form of help.  Whenever I make comments about not being able to do something because I need to be home with Anabelle, I invariably get someone offering to come stay with her.  While I appreciate the thought, that's not going to happen.  You cannot walk in off the street and care for Anabelle, even for 15 minutes.  What would you do if she started having a seizure?  Or stopped breathing?  For a typical kid, you'd call 911.  It doesn't work that way for a special needs kid.  These are regular occurrences that we have to learn to manage at home, or else we would spend our lives in the hospital.  And seriously, if you call 911, they WILL admit her.  No chance of looking her over and sending her home.  I go to every ER visit with a packed overnight bag.  They will ALWAYS want to "observe her" for the night.  So we have learned that 911 or the ER is a LAST RESORT.  I know for ourselves, we won't even leave a licensed nurse alone with Anabelle until she has completed at least a few days of full shifts with her.  Now, in MY life, enough of my friends know Anabelle well enough to know that they could never just stay with her for me, and they often do offer to run whatever errand I need done, but many of my fellow special needs moms mentioned this scenario, so the advice is: don't offer what YOU think we need, ASK us what we REALLY need.

4.  We DO have a choice.  One of the most common things special needs parents hear is, "I don't know how you do it".  And many of us have developed the pat response of: "We do it because there is no other choice."  The brutal truth, though, is that there IS another choice.  During Anabelle's early days, one of the things that came up in conversation with doctors and social workers is that if we did not feel up to the challenge of taking care of her, we could choose to put her in a group home, or terminate our parental rights altogether and hope someone else chose to adopt her.  I have several special needs friends who are parents through adoption, and it is an amazing thing that such selfless people exist in the world  While not taking her home was not an option we, personally, considered for even a second, the truth is that every one of us with a special needs child, whether by birth, foster, or adoption, at some point made the CHOICE to live this life with that child.

5. Please keep inviting us places.  I know that I turned down the invitation to your daughter's birthday party the past two years, but when one didn't arrive this year?  It hurt.  I know you have book club every month and I made it twice last year, but when you asked me to resign to make room for a new member?  It hurt.  Because it is usually not by CHOICE when I am missing these events.  It's because I have no choice.  Because the nurse called out, or my husband is working late or my daughter is in the hospital again.  But please don't give up on me.  Because I have that faint glimmer of hope in the back of my heart that says next time, I WILL make it.  But when the invitations dry up, that hope burns out, and it is a very lonely feeling.  Please have patience, do not feel slighted, and keep reaching out.  There WILL be times when I can reach back

6. Tell us your problems.  No, the fact that you forgot to dress your child in her Eagles jersey for sports day at school does not equal the 35 seconds Anabelle stopped breathing and turned blue.  (And, by the way, both of those scenarios were me.)  But that doesn't mean that I think you should shut up and quit complaining.  I am a typical parent, too.  I was a typical parent first.  I remember when trying to get Elyse to eat anything but chicken nuggets was the MOST STRESSFUL THING EVER!!  And you know what?  Many days it still is.  If I was someone you came to with your problems before, please don't stop because you think I'll think your problems are shallow and insignificant.  "Normal" things still stress me out all the time, too.  I hope I am still the non judgmental listener I have always strived to be.

7. A lot of the time, our typical kids are our greater worry.  It is pretty obvious that our special needs kids give us a lot to worry over.  Those of us who were given "expiration dates" have to try to fight them while at the same time preparing ourselves for their eventuality.  Those of us who have impaired children with typical lifespans have to worry about how to care for them as they get older, how we will continue to lift them as our own bodies start to slow down, who will care for them when we are gone.  All of that is physical, logistical and apparent.  The thing is, though, that for those of us who also have typical kids, it is usually THEIR well-being and future that cause us the greatest heartache.  These are the kids who can see what is going on.  Who will feel the taunts of schoolmates over having a special needs sibling.  Who will miss out on vacations and field trips and dance class because there is neither the time nor the money to provide those things.  Not to mention, who miss out on having your parent be involved in your life.  One of my fellow moms said, "I'll never be homeroom mom."  Well, I actually am homeroom mom for Elyse's kindergarten class, but to be honest, I don't think I would step up for it again.  It was too much responsibility to take on.  We are the family with only one parent in the stands at sporting events, one parent in the stand at the dance recital.  And I know we are blocking your view with our cameras videotaping every detail, but this is the only way the other parent gets to experience this.  Because it is too hot to bring the special needs kid to the ballpark, and the auditorium is not wheelchair accessible.  There are a lot of charities and organizations out there designed to give the special needs child what they need, but the truth is, it is the REST of the family that usually goes without.  Anabelle has never wanted for a thing in her short life.  It is Elyse who never has two parents at her side on outings, or may never get that trip to Disney World she so desperately wants.  My typical child breaks my heart much more frequently than my special needs child.

Also, for many with special needs kids, they have discovered that the condition was caused by a hereditary trait.  To have another child is to risk the same condition occurring again.  For many, it is not a risk they will take.  And the loss of the additional children they planned on having is as painful, if not more so, than what they face with the special needs child.


Elyse after her end-of-the-year gymnastics demonstration.  I went alone because the viewing gallery was on the second floor and there were no elevators, so Daddy had to stay home with Anabelle

8. Communicate.  We have never really faced the problem of people openly staring at Anabelle out in public.  Maybe because we live in a small community and everyone knows her.  But this is a common complaint of other families.  The solution is simple: just talk to us.  I have never heard another special needs parent say that they were offended when someone came up and asked about their child.  But every one of them is offended when you blantently stare, trying to figure out what's "wrong" with that kid.  Just go up and talk to them.  Also, if the person you know has already lost their child, do not avoid talking about that child.  They WANT to talk about him/her.  They WANT you to know their story.  They WANT you to share their memories.  It is not a faux pas to mention the angel baby.  It IS a faux pas to pretend he/she never existed.

One last note on communication: while we truly appreciate you inquiring after our child, we also like to talk about other stuff.  "Normal" stuff.  The same stuff you like to talk about.  Often, when walking around my small town, I get, "Hey, you're Anabelle's mom!"  I am proud to be known as Anabelle's mom, but my name is also Kate, and I was my own person for a long time before my kids came along.  Sometimes, I like to still be that person.

9.  "Life is Good".  The simple answer from a terrific lady I know with a teenage special needs son.  I know our lives look pretty crappy to you all sometimes.  But the real truth is, overall, WE ARE HAPPY.  Our children, both typical and special needs are amazing people, we have one or two or many supportive, caring people around us, we laugh, we make memories and we live the only life any of us are ever going to have.  Sometimes we falter and have a bad day, but overall WE'RE OKAY.  We are all going to make it, and we hope you'll stick around for the ride


Anabelle celebrating her recent third birthday.  Happy, happy day!!

20 comments:

  1. Thank you for this. I'm going to post it on our facebook support groups and on my profile, and I hope everyone I know will read it! God bless you! Emily Minich www.godsmercydisplayed.com

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  2. Thank you so much for this post, especially about the loss of future children. My son was diagnosed with Muscular Dystrophy a month ago, a type that is 50% chance for each child, and the loss of future children has been so difficult. Thanks for saying it so well.

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  3. I would add - that we will NEVER be able to leave our special needs child home alone, no matter how old he gets. So while you may be able to let your 12 year old daughter watch her sister so you can go out to dinner, that will never work for us. We are constantly trying to find, schedule, and pay caregivers for simple things like running to pick up another kid from school.

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  4. Thank you. Will share this with all who will read it.

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  5. Thank you. I like that you mentioned those of us who have adopted special needs children. we love our children just the same even though we didn't give birth to them. in some cases we knew of our child's special needs, in others we found out along the way. thank you for acknowledging us!

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  6. Very strong story. My daughter recently had a VNS placed in her bc we were spending one or two days a week at the hospital. She has epilepsy and would stop breathing and turn blue. Her seizures went from twenty to forty a night, with five to ten life threatening, to one this past month. Her seizures come only when she is tired and sleeping and people don't realize or understand why we can't do things after seven. Ever. We can never make an exception for her. This story made me realize I need to count my blessings more often. I am not saying that if she were in a wheelchair that our life would be worse... I am not saying anything negative about you're life. But things could be much worse, and some days I am so tired and stressed that I forget. So, thank you. Thank you for that wonderful story.

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  7. Wow! I will strive to be more thoughtful! Thank you so much for sharing and giving the rest of us some sort of wake up call!! You SN parents, I applaud you for your hourly sacrifice of "normal" life! In my eyes, you are incredible Earth Angels! I know the Lord is blessing you tremendously and it will be a 100 times fold in the next life! Good bless you all!

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  8. As the parent of a 20 year old daughter with Rett, You my dear just wrote our life story. Thank you. I hope you don't mind me sharing. My friends and family need to hear this. xoxoxo

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  9. This is a wonderful glimpse into the lives of SN families, that so many people don't know, consider or understand. Thank you to you and your friends for sharing your experiances to help educate others. Barrie, I have always loved and admired you....even more so after you became the amazing Mom to your two beautiful daughters! I always see you for who YOU are, understand your struggles and love you and your family so very much!

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  10. Thank you for writing this and posting it. It is so much of what I think and am too overwhelmed to articulate. I look forward to sharing this.

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  11. I am a mum to a 31year old Rett girl ...your story hun is touching the same nerve as it did when she was small...she is older but no easier to care for...love to you and yours

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  12. Ditto Meghan H! Great article, too.

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  13. Thank you for the insight into your life. It was very well written and I am very informed, I am a caregiver of special needs children, some of the information that you provided I never even thought of. Thank you and God bless your beautiful child. You are lucky to have her.

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  14. oh. wow. Someone wrote it all down. This is all soo true. I rarely get to go out. When I do, it's to pick something up and run back home. I can't commit to anything anymore. Between my son's health and needs and my own health at the moment, there are days when I can't imagine having a free moment. but, I love my son, I love his happiness and his laughter and life is sometimes good and sometimes great and sometimes heartbreaking. that is life. I'm lonely. there. I said it.

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  15. thank you for your story, i am a mum of a 35 year old special needs daughter who is the reason i get up every morning AND i get to see the world through her eyes as well as my own, so am extrememly lucky. i wouldnt be the person i am today if it wasnt for her, i wouldnt have met such alot of wonderful people that i have if it wasnt for her,i wouldnt be working in the profession that i am if it wasnt for her, my 2 other children wouldnt be the people they are , kind, considerate, caring, non-judgemental, if it wasnt for her,
    I am truly blessed. sure, life has been tough along the way, but for every negative aspect there is always a positive side and something to be learnt from it and always, always, always seeing that beautiful smile i get from my daughter makes it all worthwhile. i wouldnt change my life for the world. thank you again for your story, you are an inspitation, keep up the wonderful work, god bless.

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  16. Thank you for this, I have shared it with Facebook friends. I am a grandmother of a little girl with Rett and all of this is so very familiar - I get as close to knowing what it is like as anyone other than parents themselves can and I ache for my daughter and her husband when other people scarcely understand at all. Love to your family and all who contributed.

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  17. Thankyou so much for writing this, it resonates so much with me....

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  18. Thank you for this! You took the words right out of my mouth! Also, your children are adorable! God Bless!

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  19. Love love love this AND YOU GUYS. Xoxo

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