Our journey as a special needs family has had amazing highs and astonishing lows. Through it all, I’ve experienced the joys of a family growing stronger together in the face of a true unknown with Katy’s chromosome deletion. Even with all of that strength, we are still faced daily with obstacles and emotions that we don’t show many – if any – people at all. In the interest of helping others understand what goes on in our lives every day, here are five things you should know about a – or rather about our – special needs family, at least through my eyes.
1. We’re ostracized.
Whether you realize it or not, we’re outsiders. We have an all-consuming fear that something will happen to our child because she can’t protect herself the way a “normal” child can. We worry that she can’t say “Stop” or “Don’t” – or that she won’t realize she should have said it until it’s too late. We worry that people simply won’t understand our child. We have seen the sideways glances and rolled eyes from strangers when our child does something they consider rude or disrespectful. We’ve been verbally accosted by strangers who feel we shouldn’t have used a handicap parking spot for our “normal” looking child before I can even pull the wheelchair out of the back. We’ve listened to parents at our children’s school complain about how our child is somehow holding their little boy back. We’ve dealt with the inconsiderate use of the word “retarded” from our children’s own friends to even one of our child’s doctors. And no matter how many well-meaning people try to help, we will still feel alone.
We end up by ourselves at parties, whether we have our little girl or not. If she’s with us, than we’re constantly watching her to make sure she’s okay. We don’t make our rounds and say “hi” to everyone. We simply can’t for the reasons I’ve mentioned above. If she’s not with us, then we’re worried that something will happen to her away from us. We don’t go out with our friends the way we used to because it’s too frightening to leave her with someone whom might not understand what she’s trying to say or to sign. Sometimes its even too hard to get your own family to understand just how stressed out you are.
2. We’re jealous.
Even with a family like ours where four wonderful kids help out every day, we can’t help but feel a tiny pang of jealousy every time a child younger than ours simply walks up to us. Or talks to us. Or runs past us on the way to ask someone for money.
Know what’s even worse? It makes us feel guilty as hell, because we’re so proud of everything our child has accomplished. This little girl has worked harder than any of our other children to accomplish everything she has been able to do – and we wish it wasn’t so hard. We hate that that little pang of jealousy hits us because this “normal” child in front of me didn’t ask for my little girl to have a chromosome deletion. This child doesn’t realize that when he talks to me, for a split second, I think “Why? Why did this happen to my child and not to you?” And then I have to put that thought as far away as possible because it’s not fair to that child or to my little girl.
If/When Katy reads this sometime in the future, I want her to know that we have never regretted a second with her. You made us become better parents and better people. You amaze us every day with every single accomplishment you have piled on top of accomplishment.
3. We’re scared.
We try to do everything we can to set our child up for success and we always worry that we’re not doing enough. Or we’re doing too much. Or we’re doing the wrong thing. Or we haven’t done enough research. Or we won’t be able to afford that. Or how will we be able to afford that? On a daily basis, we wonder whether the decisions we’re making today will improve or degrade her quality of life. And we do it knowing full well we’ll never know the answers to those questions until they arrive – for better or worse.
We constantly worry about money because everything involved with caring for a special needs child costs way, way more than it should.
We worry what will happen to our little girl when we’re gone. So we hire lawyers to draw up special needs trusts so that our child will be financially protected when we’re gone and won’t find herself fighting the same fights we handle now for assistance and benefits. Did I mention that we worry about money?
4. We’re good at hiding things / We’re not good at hiding things.
I am a deeply private person and became even more so after my daughter’s issues arose. I’ve rarely expressed my deepest feelings too anyone save my wife. And sometimes I haven’t been able to even do that. I internalize the problems we deal with and swallow them whole, because that’s what a strong father, husband – a strong man – does. What was it that the old deodorant commercial said: “Don’t ever let them see you sweat.” I have never wanted anyone to know just how terrified I have been. I’m not sure I want them to know now.
In this day and age, Facebook has become an unbelievable lifeline and community for my wife. She found an entire village of chromosome 6 and other special needs mothers that understood her pain and frustration. That community understood what was going on when she posted what was on her mind. To others, she just seemed rude.
For a private guy like me, it took a lot to start Katy’s blog and start to bring some of the emotion of our lives to the public. It has taken even more for me to start to try to become more active within the same online community that my wife finds such comfort in. This post is, by far, the most I’ve ever revealed about our circumstances. I’m still trying to decide if I’ll even hit the post button.
5. We’re stronger than you realize. / We’re more fragile than you realize.
We’ve had to deal with watching our child get stuck 26 times over two hours as doctors attempted to get an IV in her. We’ve given our little girl over to doctors seven times to perform some sort of surgical or medical procedure that involved general anesthesia – more than all our other children combined. We’ve waited in private agony for her to be returned to us each time, hoping for the best, but scared to death that something will go horribly wrong. We’ve had to develop incredibly tough skins dealing with red-tape corporations determined not to spend a dime more than they have to on my daughter, even if they’re legally obligated to do so. We’ve fought for what we thought was right and just even when it put us at odds with family and friends.
And we’ve broken down in each others’ arms. We’ve been hurt by seemingly innocuous remarks that wouldn’t have fazed us a day – even 10 minutes before – but for some reason cut through at that very moment. We’ve hurt each other when our actions haven’t lived up to our expectations.
We’re human.
So, for our friends and family, for future friends we haven’t had the pleasure of meeting yet, for strangers to us who are friends and family to a special needs family somewhere else in this vast (but ever smaller) world of ours: What can you do?
Strive to include. Work to understand. Go out of your way on occasion to help a special needs family out. Realize that the stress and the strain take their toll. We’re just trying our best to survive. If we’ve offended you with our words or our actions in one of these times, we apologize for our moments of weakness. Hopefully, someday, we can move forward together.
We do our best to make our family life look normal and to act like everything’s fine. And we wish people might see through that facade every once in a while and understand that we appreciate the slightest effort to make us feel… special.
Todd,
Thank you for sharing your thoughts and experiences. It hit home time and time again. God bless your family. We feel truly blessed that we have had the opportunity to meet you and spend time with you.
Sincerely,
Lucy Gladstone
Todd, thank you so much for writing and having courage to post it also. Your thoughts really hit home that is exactly how I feel alot of times. We are very blessed with our children, and I am so glad to find others who really value that special little angels! You would not believe the people I run into that they care nothing about their special needs children and they just want money for them
Todd,
What courage it must have taken to post this and thank you for doing so. My family is only just beginning this journey but much of what you wrote already hits home with me. I too like to pretend everything is great and wonderful and sometimes it’s important to be transparent and let others know the struggles we go through. We must stick together and support one another as that’s how we are going to get through this. Thanks again for sharing,
Sara
Beautifully written, Todd. It is so very true. One detail that I’d add about my family is that my husband doesn’t talk to anyone, including me, about anything any more. The positive from this is that it’s brought my healthy sons closer to me and their special needs sister, and they’ve learned compassion, sympathy, and that they need to express their emotions. It’s not always good to bottle it up.
Anyway, know that you’re not alone! Thanks for sharing your thoughts.
Thanks for being so bruitily honest Todd…I would love to be able to somehow “bridge the gap”, to help people understand that this ‘special needs syndrome’ is NOT CONTAGIOUS!
To all you ‘special families’ BE BLESSED.
Todd, That is amazing! Everything you wrote is how we feel. Its up and downs, guilty feelings, and hard stress but most wonderful thing at the same time.
Todd, I am so proud of the man you have become and that you are such a vital part of your daughter’s life. Everyone should see her cry when you leave in the morning! You and Michele have done everything possible for Katy and continue to do so. You have been given a great gift “Katy-gift”. Please don’t let your worries keep you from enjoying her. We have been given the Katy-gift this summer with the six weeks we are spending with her all day. We relish every minute we have with her and her sparkling personality. Some people are ignorant and don’t deserve your concern. Others have been wonderful with your little girl: the lady at Grant’s Farm who wanted to give her ice cream just because she was in her wheel chair and looked so cute. Keep loving!! You’ll do fine.
Mom
Todd,
I just read your eloquent “Five Things You Should Know About a Special Needs Family blog.” Great job being transparent about a tough emotional subject that people can only fully appreciate if they have a Special Needs child like your Katy or like my son Max (C16.1-21 deletion). The FB C6 group is terrific and we all need to continue to support each other. Keep up the great work and give a shout if you ever feel like asking for advice, input or simply just want to shout!
Hannah’s del chromo 6q (16.2-21.2)
As Hannah’s mum I hear everything u are saying we feel the same we have came away from friends we thought were friend they were’nt they did’nt understand thank God for these group Chromosome 6Q and Unique someone who understands.
God Bless June ,Adam, Hannah,Mya & Jason
Law,South Lanarkshire Scotland UK
Great to hear from a dad! Thank you for sharing. My son will be 50 in November. I would not have missed one minute of this journey. I hope you will feel the same … I think you will.
So very glad you posted this eloquent and soul stirring list of reality checks for us all. I’m not really sure how my kids feel about growing up with a single mom that happens to be in a wheelchair, but they understand others with disabilities and that we all have issues, some just visible. We might not see it but those that grow up around disabilities become so much more! The special needs child blesses us in so many ways unseen until years later at times. Understand too that guilt, anger, frustration, angst, questioning are all absolutely human and nothing to beat yourself over. I believe God gave us a choice of bodies in order for us to learn and for Him to know even more from our experiences. How others react is their cross to bear, it hurts us but in the long run we are better for it and they have been exposed to something that makes them uncomfortable. That in itself is a lesson learned for them which they probably do not know yet. We have been blessed to have and know all the “disabled” that aren’t really, only enabled differently that average. Thank you for sharing yourself with us!
Hello Todd and Michele and of course Katy
Wow these things are so true about what you parents face every day, I am a special needs person and like Katy, I to have a very rare syndrome called PHACE(S) Syndrome *I put the S in brackets as the medical people have decided to just call it PHACE as not everyone has the Sternal cleft*, we did not know what I had till I was 21 years of age.
You all are awesome, keep the work up Katy.
Thank you for this. I am a mommy to two sepcial needs kiddos – one with Rett Syndrome and one with Down Syndrome – I could relate to every word you wrote!
A sincere Thanks to every one of you who have commented on this post or “liked” it and passed it on to others. It was up in the air that I would even post it until I actually hit the button and forced the decision on myself. Ever since, I’ve been amazed and humbled by the responses I’ve received from friends and strangers alike.
The biggest thing I want to make sure everyone understands is this: I don’t regret anything that we’ve experienced or done with, for, or because of Katy. She has been one of the great blessings of my life. I truly love every day I get to spend with her. I love every day I get to spend with all of our kids. Michele feels the same.
I can only hope for one thing to come out of this: That others may come to realize that there are stresses and issues that underlie everything in our lives now. We have to come to terms with those things as best we can and it can be a gigantic struggle some days. We appreciate everyone who supports us – online or in person.
Here’s to all of you who can help make all of our lives a special place.
Thanks for reading.
Thank you for your honest words. I, too, have a daughter with special needs (autism) and feel many of the things you have listed. My hope and prayer is that parents of ‘typical’ children will somehow learn to appreciate the blessings they have, as well as teach their own children about compassion for our ‘special’ kids.
Todd,
This is beautiful and very truthful! As a parent and a special education preschool teacher, I felt it very timely. Not only did I share this; but I emailed it to the aides in my classroom. Thanks so much!
Well said 🙂 my daughter is 10 w/ chromosome 18q-mosaic. She is beautiful, but functions like a 2 Yr old. We resemble your world 🙂 God bless.
Wow thank you so much for this. You said everything i think on a daily basis. I have a little boy with a Mitochondrial disease and it is just SO hard to make people understand why i cling to him the way i do, why i am distant, stressed, tired, overwhelmed, yet i fond it hard to accept help because i feel like i should be able to “handle” it. Its nice to know there are people that understand just how we feel every day!
This is so beautifully written. I am a mom to a beautiful 6 year old girl with Chromosome 18q- so I can understand everything you say. It is so great to know that there are other families out there that feel the same way we do!
You are an incredible Daddy and husband. I could NEVER ask for any thing better than you. I know our life isn’t easy…I know it is absolutely horrible at times. What I know even more than that is that we work together to make things “good” and we keep things in perspective. We know what is a “want” and what is a “need” and we focus on those needs so that no one in our household suffers. We don’t need so-called friends and family to show us what “love” is and what is important in life..we are teaching our kids – all of them – what is the MOST important things and that is what counts. You are a blessing and you are my rock and we will get through everything TOGETHER by communicating and show what love is all about.
That was so well written! It truly seemed as if I had felt every single feeling you had written! I hope this reaches many people so they can understand a little better our lives! Thanks for sharing your thoughts 🙂
LOVE. Unfortunately, most of our problems are with family. Very discouraging. But, at least I know, we are not alone, and we (special needs parents) can support each other. THANK YOU.
Your sentiments were very touching. I have the same sentiments caring for my grandson, Alex. For that reason I tried to convey in video what you have done in print. Thank you!
Todd, thank you. The lives of special needs parents are different, its all consuming and overwheming. But, like anything that calls great love- we are immersed in our passion for our children. We are focused on helping, healing, guiding, protecting and, for special needs folks…interpreting, anticipating anf deciphering anything we can to help our special ones move forward. And, when someone with a typical child stands in front of me at the store, or the daycare, or anywhere, and berates their child for acting or reacting to a stressful situation, in a way a typical parent finds intrusive, disruptive and/or unfortunate…I become angry. I want them to stop, take a breath and realize – your child, like my child, is doing the best he can- please champion him. He needs you to champion him- just like my child needs me to champion her. They’re kids- sweetc innocent, energy-filled kids. Love them. Right now.
Todd, Katy couldn’t have picked a better daddy if she tried! The world is full of loving, caring people. I know you have experienced that along with the ignorance of some. Know that you are loved and admired by many!
Love.
Aunt Pat
I have felt every word of this, but never been capable of voicing it. Thank you.
Amen to what you said, I have a few special needs children in my family and sometimes, I beleive I connect with them better than “the Normal” children. They all carry a special place in your heart and mind and all you do. I wouldn’t change anything about them, they always bring a smile to your heart and remind you “everyone has some type of issue, everyone!” You’re in my prayers.
We are special who has or had a special needs child. My son Justin passed away Nov 3.2009, it will be two years this Nov. We love and miss him very much I should say its extremely painful without him. Its your life, the health issues, special ed,wanting the best for him,making sure how lucky and priveleged you are to have them. Protecting them from people who dont understand. Making sure your other children know you love them just as much but their sibling cant take care of them selves. Its hard but it was worth every moment with Justin, he went straight to Celesrial Kingdom, with his brother Patrick. Its even harder when they leave. I was very blessed to have him that was my life and its hard to carry on. I had so many blessings having Justin and believe me its very lonely. Thank you Heavenly Father for giving me two special needs boys and for my daughter Rachael . There are soparentsparentsdaughter .RacaelRacahaelel. t staight to Celestrial Kingdom
God bless you and your special family with strength, joy and peace.
I have a 8 months boy with 6q del (14.2-16.2).
You certainly have a following and for good reason. Because you have so much to share! Please stop by http://rileys-smile.blogspot.com/2011/08/versatile-blogger-award-for-rileys.html. I would be honored to share The Versatile Blogger Award with you. Stacie
Our family shares all of these feelings as well. It’s hard to believe that this happens to us. but it does and we are left behind because families with typical children get to go on and we don’t always get to.. Thank you so much for writing this and sharing it..
We just found out our daughter, Katie who is 5, (03/07/06) has a chromosome 6 deletion. 6q. 22.33
I’d love to talk, send me an email if you’d like. We do all of those therapies too, plus conductive education. Lots in common!
Amy
Hi There, I was forwarded this blog entry by a friend and I cannot tell you how much it touched me. I feel as though you have written this for me and my family. My daughter has mitochondrial disease, and life is a struggle everyday. You summed up our lives perfectly. I responded to my friend that you just summarized my life! thanks for so eloquently explaining our hopes and fears. this is a must read for anyone who comes in contact with a special needs family.
Blessings.
Hi Katy
My name is Jenna and I came across your site. You are an amazing, precious gift and special earthly angel. You are full of courageous, strength, determination, and fight. You are a brave warrior, smilen champ and an inspiration. You are a princess hero, beauticul trooper, and a tough cookie. You are full of life, spunk, joy, smiles, and sunshine. You have taught everyone about life, and the gift of life. You will be in my thoughts and prayers. http://www.caringbridge.org/visit/champ291 I love it when people sign my guestbook.
Jenna-
Thanks so much for your kind words! Wishing the best for you,
Katy, Todd, Michele and the whole family.
I am in tears reading this, I have just found out my daughter is missing chromosolme 6 although I have no idea if it is all of it, part of it or more than one part, I am still in shock and have no idea what the docs are on about. I know now after 6 years what the cause of her developmental delay is now but have more questions now than I ever did. Is there a way you could let me add you on facebook? Your story was like reading my own story, The sniddy coments because she looks “NORMAL” hurt so much. Yet dispite everything, my girls spirit is hotter than the sun, she attacks everything with such gusto and stamina she puts us all to shame, What she lacks in development, she makes up for in her love for life. I have only just started to read this page and look forward to reading more, even though I know I will be sobbing so much. xx blessings to YOU, KATY AND YOUR FAMILY X
Hi Katherine! I believe you’ve already been able to talk a bit with my wife, but I wanted to say how glad I am that you were able to find some information here for you. While I haven’t done a great job of keeping this site updated, the main purpose behind it was always to try to make sure when someone went to search for chromosome 6 deletions on the internet, they wouldn’t end up with nothing like we did when we first discovered Katy’s diagnosis.
We’ll make sure you’re part of the facebook group today and we’ll try to answer any questions you have. Just know that we’re all still learning about this and just trying to make the best lives we can with our kids. One c6 kiddo can have a deletion almost exactly the same as another, but there manifestations of that deletion may be completely different. Just keep loving your little girl like it’s obvious you do.
Todd
Pingback: December 2011 & January 2012 Recommendations | Rileys Smile
Pingback: August Recommendations | Rileys Smile
Pingback: Warm Fuzzies, Disabilidentity, and Disability Rights (Part 2) | Magstheaxe's Blog
It’s so nice to be reminded that I’m not alone. There are other people out there who cry at night because there afraid of what might happen or for that matter what might never happen. I’m not the only one who worries that my child might not be able to protect himself from harm. I’m really NOT crazy….I’m just the mother of a special needs little boy trying to do the best I can to survive!
No child is ever born “perfect” or what you expect as a child. God gave you your child for a special purpose. That purpose is to make sure you help him or her out, and love him or her more than anything. God has a plan for you and your family when he “blesses” you and your family with a special needs child. With that in mind, never think any less of anyone who has a child with or with out special needs. Children are born to disappoint their parents. We are made to sin, but a special needs child will never intentially disappoint their loving parents, that provide so much for them. A special needs child, would never become a drug addict, a thief, or a bad person in society. Special needs, just means SPECIAL LOVING CHILDREN and SPECIAL BLESSINGS TO COME FOR A LIFE TIME! This is what people don’t understand, that God gave you a child to bless you while you bless his little Angel that he gave you the priviliage to care for.
Hello! I found this post by following links through another post I found on Facebook. I am a mom of a special kid, a now 6-year-old with cerebral palsy and PDD who started out life as a 23-week preemie. Blessed is an understatement.
I relate to this post so much. Thank you for writing it.
I wanted to contact you because I publish a parenting magazine for special needs parents in Florida. It’s a personal project that I started almost two years ago as a way to help other families who were just starting their journey. We have a section in our magazine called “Moral Support” that we place articles written by parents with the hope to inspire and encourage other parents. I wanted to ask if you would consider letting us reprint this entry in our upcoming issue. Feel free to reach me by email if you would like to discuss it further.
Thanks again for writing such an honest, inspired piece!
Todd, I relate to everything you wrote here. Diferently, I’m very open and write quite a lot about Antonio, my son, C6 q16.1 – 22.32, on my blog http://www.flizam.com (there’s is a few texts translated to English, the oldest ones). I believed writing has helped me to deal with frustrations and to recognize (and celebrate) accomplishments. I’m glad I found this website (as well as an interview your family did on Exepcional Family TV). Sometimes I miss to hear other fathers speaking on behalf of their children. It’s great to know I’m not alone in this.
Fábio Ludwig, Antonio’s father, from Brasilia, Brazil.
Well said :). My daughter has chromosome 18q- with little physical features but significant mental as she is almost 12 but functioning around 2. I had to repost this… Hope you not mind 🙂
brought tears to my eyes that have already shed so many tears as i’ve got a daughter that has a chromosome deletion as well. It’s hard but it’s nice to be able to relate. wish i had the same courage and suppport as you! good luck! all the best and thank you for sharing
You’re strong, Todd. One thing I’m sure, you can live normal like other family at the same time you also inspire them.
Wow – my special little angel is now 31 but this brought back so many memories that I had forgotten or put in the back of my mind. It’s still a struggle but the love I have for my son is irreplaceable.
Thank you for sharing this. Our grandson Jaden has the same deletion in chromosome 6q 16.3g21.He is 2 years now and cannot walking or communicating correctly.
I believe that God creates all life purposefully and that life begins in the womb.
Psalm 139:13
For you formed my inward parts;
you knitted me together in my mother’s womb.
14 I praise you, for I am fearfully and wonderfully made.
Wonderful are your works;
my soul knows it very well.
15 My frame was not hidden from you,
when I was being made in secret,
intricately woven in the depths of the earth.
16 Your eyes saw my unformed substance;
in your book were written, every one of them,
the days that were formed for me,
when as yet there was none of them.
Plase keep this bloq alive.
God bless you and your family,
Paul & Meisy
Melbourne-Australia