Support is such an important thing in the life of a family parenting a child with special needs. Many of us find ourselves feeling very alone and wondering if anyone else out there feels the way they do.
You very quickly discover who your true friends are.  I’ve mentioned before one of my then closest friends whose best words of comfort came in the suggestion of simply letting Parker die.
I no longer feel the hurt and confusion I once did. I can see now that having never met Parker, her heart wasn’t as invested as mine. What she would have done in my situation was different.
Every once in a while this memory makes it way up to the top of my thoughts and I find myself reliving those days.
I think many of us have these kind of stories.
On the flip side the support we have received since Parker’s birth has made up for those who found our situation uncomfortable and unsure how to respond to it.
Meals, fundrasiers, donations left on our doorstep, heartfelt prayers, our name left on the rolls of the Temple, expressions of love, all of it has been greatly appreciated.
It dawned on me today that after over 5 years on this journey, I’m a bit of an old timer.
There are new families trying to find their way.
Families that might not, for whatever reason, have the support system others do.
Did I ever tell you about one of Parker’s nurses? Â When she refused to give up her son she was left by her husband and distanced by her family.
I find myself wondering what those of us who have experienced strong support systems could do to reach out and help those who might not have the support they need.
How any and all of us could support each other.
- What do you find that helps you through the rocky times?
- What was something a friend did that although maybe very simple, touched your heart in a way you’ll never forget.
- What would you like to be able to explain to others about your life with a child with special needs?
I think more might be willing to offer support, but they are uncertain to how it might be received. They are uncertain of the way to go about it.
Cause sometimes this support stuff can be new territory for all of us.
What do you think?
My son has Sensory Integration Disorder.
He looks “Normal” so people don’t get it. They think he’s just a giant brat because he has melt downs when he is over stimulated. That can mean something as simple as having the TV on. I have lost many friends because they think my son is a horrid brat. It breaks my heart. I wish they could see him when he isn’t surrounded by to many things going on at once. He’s not like that all the time… All they see is a ten year old throwing a tantrum like a two year old, they don’t see the little boy who is in physical pain because to many things are coming at him at once.
As for things people have done…
When I haven’t been online for a day or two, I get calls seeing if I need help.
Calls seeing if I want to go for a walk.
My friend Candice seems to have a sixth sense of when I am at the end of my coping capability and she will show up on my doorstep with a snickers bar and a coke. I don’t really like either one of those, but the fact that she’s THERE means more to me than she will ever know!
I think a non-judgemental, listening ear, is the best thing anyone can give me. Someone who can listen to me rant about how hard it is, without trying to give me a solution, or a plan, but will just listen, and hold my hand, and be there for me. Someone who WILL NOT tell me they feel sorry for me!
But most of all, someone who isn’t afraid to love my kid, warts and all.
Lily is a great support system in herself! She lifts me up, I could go on and on. When she was just a little girl and we were up at PCMC having checkups she would walk up to complete strangers and give them hugs. All of them commented on how much they needed that hug at that moment. She doesn’t do that now unless she knows you but back then her spirit was closer to Heaven, her memory of the preexistence wasn’t completely gone. She was really amazing (getting goose bumps thinking about it!) Jeff would talk to her about his father who had passed and she could answer some of his questions.
We were in Las Vegas for a volleyball tournament one year she went up to a homeless man and said hello. His eyes got big and he said “atta girl!” He was so happy (okay now I’m crying). It’s the simple things that she does that we take for granted, or not even think about that is so easy for her.
I think the biggest thing with Lily is that her life has made me a better person. Because of her I am more accepting of all types of people, more for people with disabilities but in general I am much more accepting. I am also much more outspoken. I stand up for the rights of my children and other individuals with disabilities. Lily has taken me to a better place and like Jeff and I have always said she is our Ladder to Heaven.
Support system or not let your child be who they can be and learn about life from them. Watch their strength as they deal with each medical problem. Feel their joy as they accomplish something they have worked so hard for. Watch who they reach out to, I can almost guarantee that it will be someone who needs it or someone who is really good.
* What do you find that helps you through the rocky times?
My greatest comfort has been in turning over all of my problems to the Lord, I know this may sound trite to some people, but it is what has kept me going these 5 1/2 years. I’m also extremely blessed to be surrounded by my amazing family.
* What was something a friend did that although maybe very simple, touched your heart in a way you’ll never forget. I have an amazing friend, she has been the only person to ever offer to watch Luke over night at her home, her help has been invaluable. She is also a walking partner and great listener.
* What would you like to be able to explain to others about your life with a child with special needs?
This road we are on is not easy, none of us would chose it, but it chose us therefore we can chose to become better through these extremely hard circumstances or become bitter. I’ve chosen to be honest and except help when offered, prayers when they are said and to be humbled by the fact that I’m not superwomen I actually do need help and sleep once in awhile. It is extremely important to take some time out for yourself every once in awhile or you will burn out and be no good to you, your family or your special needs child.
Hope this helps,
Sue Searles wife to Gordon for 26 1/2 years, mom to Daniel 24, Amy 22, Natalie 21, her husband Josh 27, Isaiah 10, Ezekiel 9, Lily 5 and Luke my extremely special brain injured child who will be 7 next week.
What do you find that helps you through the rocky times?
Being crafty has done well for me in the past, though not all the time, I remember days before we even had a diagnosis that I was crying daily due to frustration. When we finally had a diagnosis things didn’t get easier but I had an understanding of what it is I need to do. When Lennon underwent the two transplants I focused on my studies and drew all the time. What helps too is thinking about Lennon when he feels good and when he’s doing well. He’s charming and has a great intuition of when mommy needs a hug or something. I appreciate that he’s entered my life, he has given me the courage to go back to school. He’s taught me many valuable things!
What was something a friend did that although maybe very simple, touched your heart in a way you’ll never forget.
I had to think and unfortunately I can’t think of anything. Terrible isn’t it? I don’t have many friends in the area and all my friends I do have live 3 hours away. This be the issue when you move and within month of moving learn about the diagnosis of Lennon. I do appreciate my kids’ grandmother who has come up to stay the day with Lennon at the hospital or send me a “gift” just so I can do something for myself. I often feel that many folks don’t get the reality of his life and our lives and what it takes.
What would you like to be able to explain to others about your life with a child with special needs?
I think what is difficult is that we have to watch his health, his mood, his functioning, his protein intake, his fluid intake all the time. He can change in an instant where need to worry about the ammonia going up. I constantly worry about his liver failing because of the issues with the clots and thrombosis of one his veins. His functioning and behavior is at times erratic and he can’t control it. There have been times when we have met people who looked him and asked me how old he is since his maturity does not equal his age. In addition to taking care of his needs, I have three other children that require my attention, a business that is starting to grow and studies I am finishing up. I think it is important to know that the world doesn’t stop because of a special needs child, it just changes in how we do things at times. One of the things I have learned is flexibility.
You know… finding out the way I did was a little different. With him being 6 months of age and being told he didn’t have Down syndrome over and over again, when in fact I KNEW he had it was hard. Those 6 months were long and hard. Once we got the “positive”, I couldn’t have done it with out my family and friends. They are the ones I turned to when I was scared and frustrated. Honestly though… all I have to do is look at his angelic face and everything is ok.
I’ll never forget meeting my first friend with a child with Down syndrome. She said, “Let people love him. Let people hold him and hug him. They need it and so do you.” I cherish that. It truly helped. He lifts everyone’s spirits and when I see that, it lifts mine when needed!
Several days ago, we received an invitation in the mail to attend a free evening of activities at our local skating rink and fun center. Students from one of our local high schools had made arrangements to rent the entire facility exclusively for kids with Down syndrome and their families.
There are so many positives from this kind of interaction. The high school students learn to serve and in the process, dispel for themselves many myths associated with disability. The special-needs children get to call something their own and interact with others with whom they share not only the same age, but often times, the same skill levels. For parents, activities that keep their children occupied offer a much needed break and a casual environment to speak with others parents. They swap phone numbers, advice and potty training war stories. It’s a win, win, win!
My support system was pretty rocky, even inside my home, and there were alot of cultural issues with the other side of the family to deal with. I hated any discussion of ‘the rest of your life..’. Who really knows what will happen the rest of their lives? Really? I also hated people who had no particular insight telling me what a blessing she would be. When you’re upset, that just makes you feel worse. If it’s a blessing, you should overjoyed, right?
What helped were people that put it into perspective- the ones that showed us that life really did go on (no pun intended). We had friends w/ an adult daughter w/ CP. He said to us matter of factly ‘this is far from the worst thing that will ever happen to you’. He was so right. I also loved my sister’s genuine response. She came into the room knowing Nana had been born, but not that she had DS. Nana had been transfered to a different hospital the night before for a NICU. I told my sister about the DS and she said ‘so she’s not HERE?’ Her only disappointment was that she couldn’t see her new neice. The DS didn’t matter a bit.
In those first days, it’s important to call and not avoid the person. But, after taking call after call of ‘it’s a blessing’ and ‘she’s lucky to have you’ (blech), I took a call from a friend who is very Catholic. I thought I would be in for it, but she said something I’ll never forget. She was crying (literally) when she called, but her first statement was ‘I’m not sorry that she’s here, but I am sorry that this is so hard right now’. I LOVED that statement and have planned to use it if I’m ever in that situation, because it was just perfect.
Sorry so long winded- great topic
CHris
Twitter: kadiera
Mar 4, 10
* What do you find that helps you through the rocky times?
Friends – both online and local. Faith. Alex’s smile. Looking back at the early pictures and seeing how far we’ve come.
* What was something a friend did that although maybe very simple, touched your heart in a way you’ll never forget.
A good friend came and sat with me one night a few days after Alex’s birth because we’d gotten some really scary news on top of the premature birth and my own illness, and I didn’t want to talk to anyone, I just wanted to be left alone. He came and just sat with his arms around me until I was ready to talk, even though he didn’t actually know the news we’d been given.
* What would you like to be able to explain to others about your life with a child with special needs?
That it is both easier and harder than they believe. I think people think this life is hard – and it is at times – but most of the time, it’s no harder than any other family. But some things they assume are easy for everyone are not easy for us. Just leaving the house is a challenge, much less getting back out of the car to do something. Scheduling 10 therapy sessions a week and appointments with 5 doctors is downright painful. And so on and so forth….
While I do not face the health issues inside my family as you do, we all have days where we just need a friend. I have such a friend who is there when I need her. And when either of us are having a crappy day, we can call the other and say “Let’s go for tea.” Sometimes nothing can be done to help the other, no magic words can be found. But just sitting there and drinking tea and having a friend listen is all the support we need.
Twitter: kdlavoie
Mar 16, 10
I think one of the most important things that people who want to be supportive need to know is that when one most needs support one may be least able to say what they need. In our own situation the first six months of our twins’ lives leading up to their older sister’s diagnosis with ASD were some of the most challenging days I can remember – emotionally, financially, logistically we were beside ourselves, and literally unable to think further than a day or two ahead. People who said, “Let us know if you need anything,” were least helpful. People who showed up on our doorstep with dinner in hand were God-sends. Others who offered to sit with the twins while we went to meeting after meeting, etc. were amazing. We are now trying to support another family in an equally trying time. I get them talking about what they’re struggling with and then I say, “OK let me do that for you.” A couple of times I have just brought them food, figuring they could freeze it if they didn’t need to eat it immediately. It feels somewhat intrusive, and yet they are so grateful for help being given without having to think about what to ask.