Discussion Forums
Wed, 02/03/2010 - 17:57
I'm a "nana" of 6 wonderful grandchildren. My oldest has cerebral palsy. I would have to say my greatest challenge is realizing that he does not need to be "fixed". The frist few years I exhausted myself and my daughter in a race to "find a cure". Well, he has cerebral palsy, where there is not cure. For me it was a jouney to the realization that while we look for therapies that will ensure he will live an independent happy life I have come to a place that I celebbrate the person he is and all that goes with it. I will never stop searching for anything that will improve the quality of his life as I will do for my other grandchildren.
Another challenge is realizing that while I love him tremendously, the emotions and all that go with having a special needs child is very different for his mother, my daughter, than it is for me as his grandmother. Trying to balance that and give her the support she needs very often gets confussing. I do believe she knows how much I love her and my deep desire to give her loving support and encouragement.
Tara Ecklund recently posted on our fan page:
I have 2 children, typical son who is 9 and Lilly who is 4. I have to agree with some of you that my own selfishness is a huge struggle for me. I LOVE my daughter and love her more everyday. But some days I look at her and think that this isn't the way it is supposed to be. This is not the way I imagined our family to be. Usually around the holidays, when we are around a lot of family with children Lilly's age. But I have to always remind myself that it isn't all about ME! I call it the Me-Monster! God has blessed me with the most beautiful, special little girl in the whole world. What really helps is to speak to wise( ; ) )women to remind me to pick my head up! And I'm normal to feel these feelings. Feel them and move on!
I understand completely what you are saying. Our daughter is 21 years old, Autistic and deaf. She is a beautiful young lady with a wonderful sweet spirit but truth be told, she isn't at all what I expected in a daughter. I've learned through the years, however, that many parents struggle with their children not being what they expected. We must continually adapt to the unexpected and remind ourselves as you said, It's isn't about us. We are called to a life of sacrifice.
Blessings to you! I appreciate your honesty.
Nancy
I would have to say our biggest challenge with having a special needs child is the realization that life is always going to be "mean" to her. By that I mean that people constantly stare. People are afraid of kids like her. People are ignorant in what they see in a special needs child. They are human beings. They have feelings. They are the same as the rest of us, but they have challenges. I never really had to mourn the loss of a "normal" child because I have never thought of her as anything, but normal. I think it helps that we have 5 other children who demand our attention and we don't have time to pity ourselves. We just get up and go. Katy is constantly surrounded by their activities and friends and little by little we are chipping away at the fear that so many people have. Katy has taught us, my children, their friends and the friends' parents a thing or to...acceptance, unconditional love and hope. Hopefully, it will continue.
We recognized that our son Austin was extremely intelligent early on, but was trapped inside unable to express or communicate with us. As he has gotten older we are challenged with trying to keep up with his understanding and learning of sign and his own way of thinking and how he views the world. We have never viewed him as needing cured or fixed but have looked to assist his own learning and growth to what suits him. He has Joubert Syndrome and it has brought us many challenges which we are still working through. I have had many people say that people who end up with a challenged child are chosen. It has taken some time but I am seeing some truth to this. It takes a a special someone to make us look at ourselves or others in a new way. There are also a great many people who just aren't able to understand or have the ability to make it through these challenges that are brought with having a child with special needs. It is these challenges that make us stronger and allow us to grow as individuals. I personally try to think of all situations good or bad as a learning experience to grow from. It takes people with true depth of charater to be a loving parent and accept this roll to care for a gifted child. This web sight just enforces the fact that we are all gifted and strong parents with special needs children. We love our son very much and it has helped our children undrestand compassion for others who are challenged. You can look at our post in the Joubert file to see some of our struggles we are having and hopefully others don't have to go through the same thing.
What an encourgagement your words are. You are very right in that there are some parents that I believe because they do not have a strong support network do feel so burdened that they miss the joys of the journey raising their child with special needs. It's our hope that more parents will join us here and encourage one another.
Your participation here on our site is priceless.
Susan Stephens, CEO, Executive Producer
I have 2 children, typical son who is 9 and Lilly who is 4. I have to agree with some of you that my own selfishness is a huge struggle for me. I LOVE my daughter and love her more everyday. But some days I look at her and think that this isn't the way it is supposed to be. This is not the way I imagined our family to be. Usually around the holidays, when we are around a lot of family with children Lilly's age. But I have to always remind myself that it isn't all about ME! I call it the Me-Monster! God has blessed me with the most beautiful, special little girl in the whole world. What really helps is to speak to wise( ; ) )women to remind me to pick my head up! And I'm normal to feel these feelings. Feel them and move on!
My greatest challenge is doing this over again. My dad was in a wheelchair before I was born. I saw first hand how hard it was. My friends would stare all the time, kids would wonder why we had a large van with a chair lift, and missing out on Father/Daughter dances or playing Father/Daughter sports. Everyone on the team or in school knew my situation but no one bothered to change the situation to going out to eat or seeing a movie. I felt left out along with my Dad.
My son has cerebral palsy due to medical malpractice. This wasn't the life for him, and its hard for me to accept that. It's really unfair that I have to do this again. Two important people in my life both in wheelchairs. I get mad thinking if only the nurse would have paid attention and acted quickly instead of panicking then I would have a little boy running around.
My Dad was paraplegic, he passed away a few weeks ago of cancer. My son is quadriplegic and it's hard for me to accept what his life will be like. If he was paraplegic then I probably wouldn't care at all. I know that life would be okay and he would get married and live a normal life just like my Dad did. But since he can't talk, can't hold his head up, and can't eat orally then I often wonder. What will happen? What will the future be like? Will I constantly take care of him for the rest of my life? Will he get better? Why do I have to do this again?
Honestly I do not know what it is like having a family where disability isn't involved. I have lived in the world of disability my whole life. When I see a picture of a family all standing up together then I wonder what it is like, I wonder what it is like to not have to park in front row, trying to find elevators all the time, getting mad at stairs and steps and yelling out any place that isn't accessible. I thought I would have that feeling when I created my own family, but still I'm back to where I started.
Jennifer, I too have lived the life you just explained. My father was in a hunting accident when I was 9, paralyzed and in a chair till he passed away from cancer too. I miss him so much and would love for him to be here to be a part of my daughter's life. Lilly is 4 and has a rare chromosome abnormality. Her problems are not as severe as your son's but she does not walk and is in a chair as I can't carry her anymore. I know my dad would have pushed her around on his lap and she would have loved every moment!
My dad was in the hospital and rehab for almost 2 years before coming home. We were there every weekend. Around all the nurses and patients to the point that they were family. After coming home, I would go to therapy with my dad. I have always felt like my experiences with my dad has prepared me for life with my daugher. Because I saw him work so hard and his hard work pay off, I think I handle therapy and pushing her better b/c I know the rewards will be great.
I am so sorry you have lost your dad, too. I lost my dad 12 years ago and the pain is still there. How old is your son? Your feelings are real and if you ever need anyone to talk to, just friend me on fb and remind me that you are on Exceptional Family. I will pray for you and your family during this time of loss.
Jennifer: My heart goes out to you. I can hear the frustration in your daily life. We have all been given a cross to bear in life, and your's is just very different from so many other peoples crosses to bear. I which I could ease your pain, but I can't do that for you. What I can do for you is give you a new perspective to look at life. I was raised in a very happy home life, and married at the age of 17 to a wonderful man, but a drunk driver killed him, when I was 22 yrs old, and I was left to raise our 18 mo. old baby girl all alone. I found Jesus Christ through that trial, and found I wasn't really alone, I just didn't realize Jesus was there all the time to help me through lifes trials.
Well, I thought now that I was a Christian, then life would be all better, but not so. The depression I experienced in burying my husband, and then single parenting, was just the beginning to learn how tough life really can be. I remarried a man from our church who had 5 children so we started with 6 and had 2 more, so we had 6 girls and 2 boys. After 5 yrs of marriage, my daughter from my first husband revealed to me that my husband had been abusing her for the last 4 1/2 yrs, and I called the police. He went to prison for 7 years and was deported back to Guatemala. I found out shortly afterward, that all my daughters were abused by their Dad. I went into 2 yrs of severe depression, that I wanted to die, and let my girls get adopted by healthy people. But, Jesus didn't let that happen, He made a way for me to turn to Him, to reach out to Him for all the strength that I would need to endure all the sufferings that were a head in our life. My story goes on for 15 yrs since my ex-husband went to prison, and I am now a Grandma of 2 beautiful granddaughters, and a grandson on the way. My girls did come PG at young ages: 16 and 17 yrs old, but one got married at 18, and the other one is getting married at 17 very soon. My 27 yr old, was a missionary for 6 1/2 yrs, and is in college for a teaching degree. Jesus has given me the strength to go on daily with each passing trial. I became a foster parent to 27 different girls over the last 9 years as I have single parented my 3 daughters, and I tell you, God gave me the strength and wisdom how to parent all these girls and raise them with His help. We never quite know what God wants to work in us through our trials. But trust me, He will work it for good, ask the Charlans, they have a website to help anyone hurting in this world with the disabilities, that they have to deal with daily. You will be a conqueror over your challenges, if you look to the Lord for the strength that only He can give to help you endure daily through all your trials. With Christ love, Linda
Our big problem is family members, i could not believe our family and these children;s own flesh and blood could be so cruel, Brandon, Brittni and James daddy left when my daughter was six months pregnant with James, Brandon had the microcephaly nd Brittni had the restless leg syndrome and cried all the time, and james yet to be born, he went to live with another woman who was also pregnant and that child was born with multiple problems like ears also(long story) but to be shunned by their dad;s mom who never comes around and by my other daughter who has disowned us because as she put it our house is too messy and the kids don;t mind. my husband;s sister doesn;t want her children near them. Its like they are afraid they are going to catch something from them. Brittni gets teased at school because of her teeth and Brandon gets teased because he talks funny, its just those kinds of things that makes me wonder about their future.. Brittni is very extremely smart being in oddysey for gifted children in her school. Does anyone else have this problem? Brandon wonders where his nanny)other grandma_ is and why she doesn;t come see him , he wonders where his aunt tonya is. Its heartbreaking.