Guest Blogger: Children with Special Needs and Their Moms

When I decided to do NaNoWriMo I asked my friends if any of them would be interested in guest blogging so that I could focus on my book.  I was surprised by the response I got and below is the first guest entry.  It is by my friend Nancy who has a special needs son.  I had asked her a few weeks ago what was the best way to help a family with a special needs son in my ward.  I didn’t want to come across as patronizing or rude but instead helpful and loving.

Nancy gave me some good advice and I suggested she summarize her thoughts for this blog.  I hope it starts a discussion and helps make us all better.  Perhaps if church is not a part of your life you can apply the same suggestions to other situations where you interact with special needs families, making our world a tiny bit better and more Christlike.

Children with Special Needs and Their Moms

My name is Nancy and I am guest posting for Rachel this month. I have had a hard time blogging on my own blog but feel honored to post for her. Rachel and I served a mission in the same mission. I left as she came. My mission prepared me with a few things that would and have helped me in my life. However, it didn’t prepare me for what was fully in store.

In 2005 we found out we were expecting our first child. I was attending the University of Utah and had already applied and started school. We were very newly married and thought we had the whole world figured out. We had planned that I would finish my semester at school and be on my last final and would go and be induced the next day. Our official due date was December 25.

The last week in August we found out we were having a boy. We were very excited and scared and the reality that we were having a baby was setting in. September brought chaos.  Tyler decided to arrive 15 weeks early and was born September 21st weighing 1 lb. 11 oz.

our full story can be found on my blog.

Tyler is now 7. He has several diagnoses and is disabled. He has cerebral palsy, hydrocephalus and is legally blind. Tyler is not in a wheel chair but has very obvious disabilities. He is much delayed and doesn’t act 7, but ranges in abilities from about 2-7. Some days are challenging.

One of the hardest things to do is to go to church with Tyler. In Nursery he had a walker so he was not allowed to go in with his walker because it was a hazard to the other kids, and it really pushed us away for a while. It was easier to not go. As he was older, we have gone back and been active, and inactive, depending on the season. Seems weird to some, but we do what we have to sometimes.

Here are some things that might help others understand disabilities and church and how to approach a mom/dad with special needs and a few big things NOT to say!

So here are some don’ts:

  • Do NOT attend church if you are sick.  If you have been around people who are sick, have had a fever, or just don’t feel well. Kids with special needs tend to have a compromised immune system. Places like church are a breeding ground for sickness. A cold to you is a life threatening illness to them.
  • Don’t tell the parents that it is a “blessing to have a child like that.” Because the truth is, it’s very hard and most people go through a period where they don’t feel it is a blessing. It can also be a source of anger towards Heavenly Father.
  • Don’t be afraid to wonder what is wrong with their child and especially don’t be afraid to ask. Better ask than stare.

For the do’s: (Because there are more positives that you CAN do than not!)

  • Ask AND MEAN what can I do to help? Having a kiddo with special needs is HARD stuff and moms with those kinds of kiddos are tough as nails and don’t have time to sift through the fluff of who is just saying it and who isn’t.
  • Don’t be afraid to ask what their diagnosis is, what it means and offer something to help during church. I haven’t sat through a church service in 7 years. Ty gets overwhelmed. It would be nice to have someone offer to sit out in the foyer for part of sacrament, so I can listen every once in a while.
  • Understand that we are trying to keep our kids quiet and when you see a seven year old playing fetch with his brother in church it isn’t what we WANT them to do, but what we have him do so we can go to church.
  • When they don’t whisper, understand it is ok. Heavenly Father doesn’t’ really care if they are quiet or not. And then, reach up and ask if it is ok if you take him for a walk. Moms are so embarrassed by the loudness of their child, but a quick walk outside is refreshing. We would do it ourselves, but having someone offer gives everyone more blessings. Us for going to church and you for serving.

Those are the ones that I can think of. Heavenly Father understands why you miss church when you are sick; he understands why we stay home if we need to. He understands so much more than what we do as church members. Special needs are hard and not everyone ever accepts it as “Gods will.” It takes a toll on a marriage, family and the child who has the disability. But it also does bless us. I know for us, our testimony of unconditional love is one that only a parent of a child who has accountability missing could have. They don’t know or understand hate.

As the mom of one of these awesome kiddo’s, I appreciate all that anyone is willing to do to learn about my child and how to help him have a better experience. I am willing to talk to anyone about him. I am willing to share a bit of his amazing spirit with anyone who is willing.

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