son with Spina Bifida

[newbirth]

Ok, ideas and suggestions requested.

My 2 year old son has Spina Bifida. Right now he uses a walker, and usually can get about2 feet before he is easily distracted. He struggles to walk with the walker. Without it, he can only crawl.

Ok, with that said, Here is my question. Are there any parents on here who have dealt with a child, in church, with special needs? My son doesn't need special attention. He just can't walk like other kids. How do I put him in Nursery with the other kids, and, how do I transfer him to Sunbeams if he can't walk from A to B at the normal rate of other kids?

I haven't gone to church for this simple reason. I don't know what to do. I'm afraid the other kids and adults will not respect him as a child with special needs. We do live in a fast paced society, where everyone is expected to keep up with the status quo. Special needs does not conform to this expectation. It can't. And, as busy as people are, our experience is that they don't want to deal with a special needs child. It is sad, but realistic.

I know you idealists out there will give me the 'pray about it, trust God' response. Trust me, you have no idea what kind of world we live in if you give me such a response. I am looking for realistic, honest feedback. Our son was born with a hole in his back the size of a doorknob. All of his nerves grew outside of his body, not in the spinal column. He has had countless surgeries, and is still undergoing medical attention on an ongoing basis. He is a happy child, a very strong child. We love him very much. He has a shunt implanted in his head to drain the excess spinal fluid, something he will have the rest of his life. One of his legs is fine. The other has difficulty with the muscle/nerve communication. It needs time to work itself out in order to function properly.

I'm only asking for input from people who have been in my shoes. How have you dealt with the ward you are in? How did you deal with the struggles and challenges of the various programs for the children? I look forward to your replies.

Thank you in advance.

[Vort]

My 2 year old son has Spina Bifida.

I am sorry for your struggles, and hope for the best for your son.

I know you idealists out there will give me the 'pray about it, trust God' response. Trust me, you have no idea what kind of world we live in if you give me such a response.

I suspect that few or no people on this site would give you such simplistic advice.

I'm only asking for input from people who have been in my shoes.

Then I will offer no input to your question. I would suggest, however, that you be a bit more open to the insights of others, who might have valuable contributions even if they have not personally had children with such challenges.

[applepansy]

Ok, ideas and suggestions requested.

My 2 year old son has Spina Bifida. Right now he uses a walker, and usually can get about2 feet before he is easily distracted. He struggles to walk with the walker. Without it, he can only crawl.

I'm sorry you and your son have this challenge.

Ok, with that said, Here is my question. Are there any parents on here who have dealt with a child, in church, with special needs? My son doesn't need special attention. He just can't walk like other kids. How do I put him in Nursery with the other kids, and, how do I transfer him to Sunbeams if he can't walk from A to B at the normal rate of other kids?

Our ward has had two children who come readily to mind who were special needs. A person was called to be the child's helper. It was their calling. It worked well and those who were called to help found it a very rewarding calling. One child was autistic and the calling involved more than just Sunday. They had to go to his house during the week so that he could get to know them and trust them. Its a little awkward at first but everyone involved was blessed and are grateful for the experience. The second child is still in our ward. His brain was not fully developed. He's 6 or 7 now and doesn't need someone with him all the time, but his attention span and language skills are about age 2. Everyone in our ward watches for him, regardless of where he is.

In our Stake there have been several children with special needs. My children grew up with two of the kids. These children were treated with more respect than kids usually treat their peers. The girl who grew up with my son couldn't walk when she started school. Her entire high school class cheered when she walked across the stage to get her high school diploma.

My cousin was born with her entire brain outside her skull. She's in her 30s now and there would have been more help from my Aunt's ward if my Aunt had allowed the help. Instead she became fearful and determined to do it alone. It has been harder than it needed to be. All she needed to do is put aside her fear and realize there are members of the church who want to help.

I haven't gone to church for this simple reason. I don't know what to do. I'm afraid the other kids and adults will not respect him as a child with special needs. We do live in a fast paced society, where everyone is expected to keep up with the status quo. Special needs does not conform to this expectation. It can't. And, as busy as people are, our experience is that they don't want to deal with a special needs child. It is sad, but realistic.

Do not let your fear of what might happen keep you from the people who are in a position to help. Talk to your Bishop and explain the issues. There is help in your ward. Don't let your fear keep your from finding the people who can be angels in your life and the life of your child.

I know you idealists out there will give me the 'pray about it, trust God' response. Trust me, you have no idea what kind of world we live in if you give me such a response. I am looking for realistic, honest feedback. Our son was born with a hole in his back the size of a doorknob. All of his nerves grew outside of his body, not in the spinal column. He has had countless surgeries, and is still undergoing medical attention on an ongoing basis. He is a happy child, a very strong child. We love him very much. He has a shunt implanted in his head to drain the excess spinal fluid, something he will have the rest of his life. One of his legs is fine. The other has difficulty with the muscle/nerve communication. It needs time to work itself out in order to function properly.

Idealists? You sound a little angry and bitter. I agree with Vort, I doubt you'll get that from people here...not for your circumstances.

I'm only asking for input from people who have been in my shoes. How have you dealt with the ward you are in? How did you deal with the struggles and challenges of the various programs for the children? I look forward to your replies.

Our ward goes out of their way to help those who are struggling with more than they can handle. I'm sure we aren't the only ward in the world who tries to help those who need help. The only person in our ward, who I know personally, doesn't get the help she needs with her daughter (in a wheelchair) is because she refuses the help. Her daughter has severe cerebral palsy. She's in her 20s now. Its difficult for her to talk and impossible or her to walk. But she has a calling and she contributes. I'm not saying you're going to refuse the help, but I wonder if your bitter feelings might not keep you from asking for help in the first place.

To get the positive results you're looking you have to let go and trust someone else with your child for the few hours you'll be in church. Its hard but you need to do it. You stated "I haven't gone to church for this simple reason. I don't know what to do. I'm afraid the other kids and adults will not respect him as a child with special needs." Go to church! You and your son can be a blessing to others as much as they will bless your lives.

[annewandering]

I lived in a stake in Salt Lake that had a boy who had severe problems and needed special exercises twice a day as I recall. He was about 15 years old at the time. He has been 'injured' at about 18 months. The stake had a schedule of people to go into the home, willingly and happily, ALL that time twice a day for YEARS to help his mom. Given that, I have no doubt that people in the ward will be happy to give your son any help he may need. There are good people and if it concerns children you will get help as wanted and needed. Just go talk to the bishop. I think you will be pleasantly surprised. I know there are ignorant people in the world but most people are more inclined to help kids than hurt them.

[classylady]

The bishop in our ward assigned a special helper for my grandson who has Aspergers. My grandson grew to love this Sister dearly. She attended primary with him, she wasn't the teacher, but was specifically assigned to help my grandson. We didn't ask for the special helper. I didn't even know there were callings that allowed for that kind of service. My grandson is old enough, that he doesn't need his special helper any longer, but she was a wonderful help during the time when he did.

[newbirth]

Then I will offer no input to your question. I would suggest, however, that you be a bit more open to the insights of others, who might have valuable contributions even if they have not personally had children with such challenges.

I appreciate your input. I find it much easier to use parameters than to just open myself up to anybody's comments. I understand what you mean about being open to other's insights, however, I have learned too well that unless I have actually walked in someone else's shoes, though compassionate and understanding I think I might be, there is more to an empathetic response if I actually did walk in their shoes. My son's special needs have opened an entirely new scope of compassion I never had before towards other people with special needs. And I thought I was compassionate already. I wasn't as much as I thought. I apologize if you took my post offensively in any way. It wasn't made to offend.

[newbirth]

Idealists? You sound a little angry and bitter. I agree with Vort, I doubt you'll get that from people here...not for your circumstances.

Yes, I guess you can say I sound a bit angry and bitter. Honestly, I'm not so much angry or bitter, just have experienced deep hurt over the years that I have a hard time getting through. It's nobody's fault, just my own for not knowing how to 'get over it'. I guess time will help. I have been blessed with so much. Thanks for being honest. It helps me reflect.

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[Hala401]

I'm not going to reveal much about me, but I'd encourage you to give folks around you a chance. I was absolutely sure that I'd be rejected. After all, several other groups had done.

I think it will be a great oportunity to others, and perhaps minister to you also. Maybe your child is not as repulsive as you think.

[newbirth]

I'm not going to reveal much about me, but I'd encourage you to give folks around you a chance. I was absolutely sure that I'd be rejected. After all, several other groups had done.

We have decided to try out this coming Sunday, thanks to all the encouragement here.

I think it will be a great oportunity to others, and perhaps minister to you also. Maybe your child is not as repulsive as you think.

I would never even think to consider my child as 'repulsive'. I don't have much faith in people, considering what we've been through already. I think people's negative attitudes and behaviors towards special needs people are repulsive.

[beefche]

I would suggest you talk to the bishop and primary president about your child's needs. Most of the time, people want to help but they just don't know how to help. Or they are afraid of hurting the individual with help that isn't correct.

[Bini]

A lady I know shared a story about how one of her children (diagnosed dyslexic) had major anxiety over attending Sunday school because the teacher randomly called upon individuals in the class to read passages. She said her daughter developed a real fear of going to church, until she sat down with her daughter, talked about it, and then addressed the concern with the teacher. The teacher no longer randomly selects kids but rather she has subtly modified her teaching to where it is a "volunteer" environment, or the teacher reads the passage and then it is discussed as a class. Just wanted to share that. Everyone has made great suggestions, definitely, talk to the bishop and or teachers regarding your concerns. Best of luck!

[Traveler]

I thought to add something to this thread. Just this week I saw a ward member standing in an isle at Home Depot looking very lost. I thought to cheer him up with a little stupid humor but he did not respond well. Thankfully my very sensitive wife pick up immediately that there might be a problem. She also remembered that this member was supposedly out of town on a business trip.

As it turned out he had come home early because his wife (pregnant) that morning during a routine check up found out that their to be borne child has Spinal Bifida. In a few days they would be going to San Francisco for evaluation and hopefully surgery that could help. But with the surgery his wife would be confined to bed for the rest of the pregnancy. No wonder he was dissonant. We live in a rather upscale neighborhood and I do not think there are any special needs even within our stake.

I am very clumsy with these kinds of circumstances but I believe we all need to become more open with our challenges we face - especially concerning our relationships with other saints -- for two reasons.

First: Because there is no reason anyone face their challenge alone without the resource of other saints - because the other saints are not included within the circle of knowing what is going on. None of us should sit around thinking someone will notice and come to our aid - it is much better to be open so that socially inept individuals like myself will not respond improperly because we are not aware of your stress.

Second: Because there are others that can and will benefit by the trail you blaze through the jungle of ignorance. Like our pioneer ancestors you have a very important opportunity to open up hearts and minds that desperately need opening.

Like the very concerned brother in my word - I am glad you have confided in me thus far and I wish and pray for the best for you. Please come back and post from time to time about progress or difficulties this brings. It will astound you who you will touch.

The Traveler

[Hala401]

We have decided to try out this coming Sunday, thanks to all the encouragement here.

I would never even think to consider my child as 'repulsive'. I don't have much faith in people, considering what we've been through already. I think people's negative attitudes and behaviors towards special needs people are repulsive.

I wish I could come to church with you. People say I was a Navy Seal. :)

[Hala401]

When I started out as an investigator, and finally a member, I was completely sure that someone would call me out, and say horrible things to me, or worse yet, nothing and walk away. There is a reason that some could reject me. My ward is particularly accepting and there are several special needs people there. And, so far, when attending singles events from Longview to Salem, not a single person has said a word. I attended church in Provo once and not even in what is said to be the most conservative and picky of the Mormons no one said a word.

From being a Muslim woman, I learned that a big smile and friendly conversation can overcome much and I was only called a terrorist or otherwise treated badly a few times.Through it all, please just know that Heavenly Father loves you. If others are unkind, know that Heavenly Father abhors this.