Reason, Season, Lifetime a dear sweet friend recently posted this and no truer words have been spoken because people are in our lives for a reason,  season,  lifetime. I was reading an article today written by a friend for one of the local papers where I grew up in IL. She wrote about whether or not people can change or be changed. Can we make people change I believe some can change and I also believe there are some that no matter how hard you try or even they try they just can not change.

I have been hearing alot the last few days about how so many people feel so alone because they don’t feel they have the support or get the support they need for their children or family members with epilepsy and or special needs. That families don’t seem to “get it” or understand certain things or they don’t want to understand or get it because they won’t or can’t accept it. Living with epilepsy is not easy, it’s heartbreaking, emotionally draining, it’s frustrating, it’s never ending, it’s consuming of ones time and energy, and it leaves one angered because often its uncontrollable and constant. Epilepsy is not only scary but it can be deadly SUDEP sudden death due to epilepsy is almost always never talked about or mentioned another thing that has not changed but one that we must change.

Support whether it be family or friends is so very important to have in our world and in our community. Without it we feel isolated, we feel that no one cares, that we don’t matter or that our child and or family/friends with epilepsy or special needs does not matter truth is we all matter. So how do we change people well we can’t but what we can do is help change their mindsets and behaviors by leading by example and being the one that can show and offer support. Their are many ways that as a friend you can support or show support here are a few ideas that I like and think ones that can be done by and for anyone. I have my own family support issues so you see your not alone.

As Parents of children and or family members with epilepsy or special needs of any kind they get very little sleep try one day stopping by and asking if they would like to take a short . power nap while you play with their child.

When you go out to do your grocery shopping make a call and ask if there is anything they may need or want.

Let the parents/families know that you will be their emergency contact in case of illness or accident. This will create a peace of mind that is priceless especially if it should happen to be a single parent household.

Offer to mow the grass or shovel the walkway as many parents can’t leave their children inside alone while they do this.

Instead of a Christmas gift, send a card with a note that you will come spend some time with the child while the parent cleans house or runs errands.

If you are a neighbor, offer to help carry in groceries or entertain the child while the parent does.

Find resources locally that will help fulfill needs the child has or be helpful to the parents like support groups.

Offer phone support. Many times parents can’t get out to support meetings and could use a sounding board or just a listening ear.

Never tell parents what they “should” or “should not” be doing. The Parents know their child best and these children have therapists and specialists giving advice already. Unless you specifically know the child and know the condition that the child has, your advice may not fit nor be welcomed it’s basic common sense.

Don’t assume that the parents don’t know what they are doing or that the child’s diagnosis is wrong. These children have been tested and retested again and again. You can offer your own personal experiences and share what has worked and or has not worked for you but always remember each child /family is different and no one can diagnosis another.

Go to the home instead of inviting them to yours. There home probably has items and precautions in place for the child’s safety whereas yours may not.

Do a Neighborhood potluck dinner. When you are doing your holiday baking  remember the family. Just the thought will brighten their day. (Ask what the child will eat or if they are on a special diet.)

Never insist the child eat something that is not on their diet. Many special needs children have problems with diet and can’t eat certain foods or if they have epilepsy may be on the ketogenic diet never ever hurts to ask.

Talk to your own children about children with epilepsy and special needs. Do your research so that you can let your child know why some kids have  special needs  but also let them know or teach them that disability is not inability, teach them compassion, teach them about unconditional love. Children are notorious for being wonderful advocates for children  with special needs.

Be understanding and supportive. The parents probably have had many friends and family members who don’t always speak to them or include them because of their own lack of knowledge and understanding.

Get to know the child, learn what he or she likes and don’t worry they will tell you what they do not like. Don’t force hugs or kisses, wait for the child to come to you or ask for a hug. Try redirecting instead of stopping any unwanted activity. Learn the child’s mannerisms. This will show you telltale signs of an impending meltdown so you can switch gears and do something different.

Talk to your churches about making it a safe place for parents of children with special needs to come. Maybe have a special needs Bible Study class with extra help so these families can also attend church, start a support group I did that at mine.

When visiting your neighbors or friends and are talking come in and close the door behind you.

Offer to stop by so the parent can shower or take a long hot bath!

Above and most of all, never judge. These parents are probably exhausted, running on little sleep, and doing the best they can. Talking to them about discipline that worked for your normal child is not helpful at all. All children are different but children with special needs are sometimes and often are overly sensitive to textures, sounds, touch, scents, and more that  parents can’t control even with discipline. So use common sense and be a friend not a judge.Communicate with them and get to know them, be compassionate and love them, be accepting of them and who they are. These children are special because of who they are not what they have. These children are our gifts we are their blessings.

We as parents/caregivers were given these children for a reason, they help us change with each and every season and they love us unconditionally for a lifetime.

A Prayer for our Special Children is one I love to read I hope that you will find peace and comfort knowing that support for you is available “Your Never Alone”

Lord of all kindness, we ask your blessing for the children in our care who have such special needs
We ask for their comfort when their living is hard
May they experience joy if they ever feel abandoned
May they be blessed with strength to overcome challenges
May they be blessed with friendship to allow them to grow in love
Lord we pray for all the children that they may realize their dreams and live
their lives in the fullness of your love and mercy
May the healing touch of mercy be there for our children
Let our hands be your hands, our words be your words and let your mercy flow
through all of us who have your children in our care
We pray in the name of Jesus

Author-Jan Bentham

Thank you all for the support you give to me and my family each and everyday! May his amazing grace be with you and those whom you love always and forever!