I know most people who are similar to my own family and its dynamics probably find it difficult to do any outside activities, depending upon our loved ones challenges. But down through the years of raising my family and my youngest child, I have had both failures and successes.
I have experienced those horrible moments of being laughed at, pointed at, talked about with the whispers as we pass by, oftentimes made to feel unwanted and misunderstood by his behaviors as a younger child living with developmental delays. It has always been my stance and his siblings to protect and watch over him. To use our voices to speak on his behalf or to stop the stigma that others may have thrown our way.
So with our life experiences and God as our center of hope, faith and love for others, it was impressed in our spirit to begin a ministry to cater to other families like us.
In addition to talking with other families we have met, mostly all feeling the same way as us, we began to see a great need within our own community for a special needs ministry. A service where these families can come and worship God together in the same sanctuary. Our loved ones can be involved with the service in their own way of expression. Whether it be them sitting, standing, running, jumping, rocking in their seat, walking the floor, clapping, shouting with a joyful noise, whatever their ability to praise God. There are no stares, there is no pressure to feel unwelcome for being “different”. Just a place where all families can come together in one place, God’s House and feel the love, and be able to meet others who can truly relate to our daily living.
The service includes everyone and offers a time for those who may want to share their story about their journey. Individuals are included for a time of prayer, scripture reading. Followed by music, a gospel message and invitation at the altar.
I would like to ask every person that is supportive of this ministry and has personal social media accounts to share this news within their community and with their followers. We hope to inspire other churches to grab ahold of this great need for those who have been overlooked and forgotten by people, but NOT by God.
We are NOT FORGOTTEN MINISTRIES. Come join us every 3rd Sunday afternoon at 1pm.
My youngest son, Erik is 17 yrs old. He has developmental challenges and today we decided to take him to see Toy Story 4. Afterall, we have all had a long month with his knee injury and he is finally up and walking again.
Photo credit: Disney / Pixar
The last time he was in a movie theater to try and see something was when Rio was out and that was 2011. I remember he was 9-1/2 years old at that time. He had a fear of darkness and loud noises. It was a “sensory film” featured at our local AMC theater. This was inspired by individuals living with autism and/or other special needs. It was supposed to be a movie with the lights dimmed low, and the sound not as loud as normal showings.
However, I’ll never forget that day because the person in charge of operations, messed up and blasted the sound before turning it down, and forgot to leave the lights dimmed at first. It took a lot of coaching, verbal cues to survive that movie. I remember other children running around and walking the aisles. My son sat still frightened in his reclining chair, while wearing his headphones. I don’t recall being able to focus on the movie myself because I was too busy making sure he was okay. I also remember telling myself and my husband, “Never again! I guess we’ll never be able to take him to a movie theater because it was just too much.” And from that time forward to today, our family has always waited until summer and been fortunate that there is a drive-in theater where we can go together with no issues.
HOWEVER!! Today, was a completely different story! I waited until last night to tell him we are taking him to see Toy Story 4. Anyone else who has a special child like my Erik, probably can relate to picking your battles and knowing your child’s behaviors. I wait to tell him things because otherwise I have to hear about it all day and everyday leading up to the event. And sometimes it causes anxiety for him which can backfire our plans.
Happy moment for Erik!
Anyways, I told him last night and he was happy. He picked up his phone that and began typing on his notepad, “tomorrow we go see movie toy story 4 mom and dad”. And he did his little self talk all evening.
On the drive to the theater my own anxiety began to build a little, thinking what if he talks to loudly and disrupts the others, or if he begins throwing a fit? But I explained to him during the drive there, “Erik the movie theater is going to be dark inside but it will be okay, and you will be safe, me and dad will be with you and it’s gonna kinda be like the little theater at your school when you had your senior awards night.” He was okay with that. I had to try and use a familiar experience with a good outcome that he could relate to. And it worked! Because when we got to the theater he went up a few stairs and sat in the chair. At first he seemed afraid, but he told himself, “its okay, Erik, this is just like your school when you had senior awards night, your okay, your gonna see Toy Story and get to sing your song, you got a friend in me.”
Photo credit: Disney / Pixar
The good thing is that the recliner chairs in the theater are very similar to what we have at home so that fear he had at 9-1/2 for reclining back was not there anymore. His dad showed him where the buttons were and he reclined his feet and they shared their popcorn and he was set. At first I thought he was going to startle from the sound so I brought his head phones just in case, but he didn’t need them. I was so proud of him!
He even got to sing his favorite theme song along with the movie. And he made a couple of remarks during the movie which were appropriate during some of the scenes with Woody and Buzz and some new characters. I won’t say anymore, because I don’t want to spoil it for those who haven’t seen it yet.
My son and my husband
As the film ended after about an hour and a half, we walked to the van and my son said, “I did it, I saw Toy Story 4 now and I did good.” My husband and I reassured him that indeed he did a great job.
I wrote this article today to hopefully inspire another mom or caregiver that may have lost hope or might be feeling like they won’t ever be able to take their child to do things that others can do.
To anyone who is reading this and has walked along my path, I will just say, what didn’t go well today, doesn’t mean it won’t go well for you in the future. Never give up hope for your loved one / child’s abilities to accomplish even the smallest of things. What other families may take for granted we know that these small things are a huge milestone for us.
It may take months for some to reach that next milestone and years for others, but just keep trying and insert new experiences here and there. Allow your child to develop courage and overcome fears, while you learn what it is to appreciate the small things in life. Those small things that we sometimes don’t appreciate because maybe we spend too much time complaining about things.
I think what is most helpful for me, is knowing what MY OWN REALITY is and not wishing to be like other families. Because if I keep measuring my son’s growth to that of someone he isn’t than I’m living in a fantasy and not reality.
I used to be like that, and its not helpful and it wasn’t good. Anyone who has a special needs child can probably relate to feeling like your world is different and unrelatable. But in fact, it is much more common than you have allowed yourself to experience. It seems as though most of us are inside, behind closed doors, kept quiet and shielded from potential harm. But I’ve discovered that there is a community for us.
I hope everyone has something to appreciate about their child and themselves. Even if it seems little. An accomplishment is an accomplishment no matter what. And today, July 9th, 2019. This was Eriks, that he was able to see a movie in a theater without being afraid and without being disruptive. And it wasn’t even a sensory film and it was at a much nicer theater than the AMC that we attended in 2011.
Thanks for being here and thanks for listening. If there is another mom, dad or caregiver reading this that feels discouraged about their child’s diagnosis or development please trust the process and keep your faith. It will happen for you in due time.
Today, marked the 1 year anniversary of the special needs church ministry that my husband began in May of 2018. I follow his lead as he is operating in his purpose. The name of the ministry is called Not Forgotten Ministries. Such a fitting name for the ministry, because we want other families who have special needs loved ones or individuals living with disabilities or other mental or physical healthcare challenges to know they are not forgotten by God.
Church Info
We had 3 new visitors along with their family or caregiver today. It truly did my heart some good today to see the people participate in prayer, scripture reading and singing along.
A mother sharing her story about her daughter’s health challenges & God’s goodnessPics from Not Forgotten Ministries
Our service isn’t your typical church service either. It is geared specifically for special needs families. The entire family. Not to separate the individual with special needs from their family but rather include the whole family in one service. We always offer to involve everyone with prayer, scripture reading, and a brief time for sharing their story. Followed by the word of God, more prayer and benediction, but at times we go off script to accommodate the needs of God’s people.
The girls playing with balloons in the kitchen during refreshments
It’s always lovely to hear others share their stories about the journey with their special loved one and all they have overcome or are still handling today. Especially the other mom who shared today, about how happy she was at the service, mentioning that she had been to a different church that was supposed to be for special needs families, but they separated her from her daughter, while she was able to attend service with the congregation, they took her daughter into a private room with others to watch the service on a monitor and she said she didn’t like how that made her feel. So it was really nice to hear that she felt welcomed and comfortable.
As a mom, caregiver myself, I know first-hand the daily battles, struggles, victories, achievements and strength it takes to do it every single day. It’s not always peaches and cream and its not always smooth sailing, but I will admit, it is ALWAYS worth my time, my love, my support and my efforts to help my children and others within our community.
Me holding sis Shana’s newborn baby girl, Novalee. Such a precious baby. She was born premature, but God has blessed her with good health.
I am sharing these short video clips to show the glory of Gods special people. I was told by one caregiver that today was her very first time hearing her client pray and that it touched her heart. These families come from all kinds of different walks of life, Autism, ODDS, Epilepsy, Dementia, Developmental delays, mental health challenges but we all come together here in one place, unified as one body in Christ. We know our loved ones diagnosis but it’s like white noise to us. We only speak, write about, refer to it because it’s how others can identify with us at times.
I truly hope to possibly inspire others by sharing this. And maybe if you happen to be a minister or pastor of a church, you too will become inspired to begin a similar ministry in your town. There are many families just like mine, just like these, that would love an opportunity to come together at church and feel welcomed, accepted and understood. Again, this is not your typical quiet service. We cater to the needs of the people and their families as we realize the sensory issues and the other need to express themselves openly. We are all Gods people. We are all loved. We are all unique and wonderfully made. Created by God in his image and his likeness.
So to that other parent, caregiver or individual who’s reading this and living with health care challenges, don’t ever let someone shame you or make you feel less than worthy, just because your blessed to be who you are, or the person your caring for. Don’t allow others to stigmatize you. Hold your head high, walk in confidence and be proud of the life you have! Share your story to inspire others. Tell your story to educate others.
I hope I was able to encourage someone this evening!
If there’s one thing I have learned along my journey with life and God, its this. Sometimes God put me in temporary inconvenient places because He was preparing me for a permanent position with promotion. So when your dealing with hardship, just know it’s only temporary. All that stressing is just a pathway to your blessing.
I’m talking about what I know, not what I heard. I’m speaking from my own experience and not that of someone else’s.
I’m hoping to give others some inspiration and encouragement this evening.
Thanks for being here. Hang in there! It’s only temporary.
Never allow others to redefine ur character & who God called u to become. And never allow them to influence u stray off the path that u know God set before u. Every1s journey is different. Its not worth chasing after other ppls dreams, instead chase after ur own.
This is my son, His name is Erik. He was just a baby here, he is now nearly 17 and able!
My son far left, with his teammates.
Yes he has developmental delays but he is living his life just as anyone else would. Able and capable to try new things everyday. He has overcome many obstacles.
My son at his dance classMy son at cooking class, washing dishes.My son working out with my husband, his dad.
For those other parents who might feel hopeless. Don’t give up on hope. It can get better with time, patience, prayer, hope, and support. And to think 17 years ago, he died twice, was on life support, suffered seizures, and doctors didnt give him much chance of survival! Well we proved them wrong! And he isn’t a vegetable either, like they said he would be. We were told he would probably never talk, walk, or be able to eat normally. To God be the glory!
Keep hope, stand on your faith, and stay encouraged, even when the clouds are dark and the news is bad. The outcome is better than where it all starts.
This is just some advice from my own walk of life.
Oftentimes I think we need to do more of these very exact statements. Instead we set ourselves up for disappointment, because we treat our friends like our therapists, and we go in way too deep instead of keeping things on the surface. Which can ruin the friendship for a variety of reasons. Breaking confidentiality being the main reason.
And instead of sharing our story for inspiration, we either don’t tell it at all, or we focus on the negative pieces ONLY, which just blocks us from reaching our own potential to do amazing things. Stop allowing people or bad memories to steal your happy moments.
Lastly for those fellow believers, keep the important things between you and God. Especially, your dreams, aspirations, goals, because people can kill your dreams, persuading you that your aspirations are ridiculous, or do everything in their power to block you from reaching your goal.
Keep hope alive, operate in faith, continue moving in YOUR purpose and allow God to give the increase! Write your vision, and make it plain.
That’s all for this article. Thanks for being here again.
My 20yr old daughter was just recently diagnosed as having a form of epilepsy called Juvenile Myoclonic Epilepsy. She has been unable to drive herself due to our state law and for safety precautions.
However, we are approaching the time where she can become cleared by her neurologist to get behind the wheel again. But I’m honestly a little concerned, worried as any caring mom would be.
My youngest son and daughter.
Looking back at her development and her behaviors as a toddler and smaller child I think epilepsy may have always been present in her life, but went unnoticed due to my lack of education and awareness about epilepsy. She would often appear to be “spacing off” or “deliberately ignoring” us as a small child and we have now learned she was probably having mild grade seizures. Therefore, she wasn’t dropping to the floor and jerking but appeared to be alert and seen as either ignoring or spacing out as people do at times.
You’d think I would have been better informed, being that my youngest son had his fair share of seizures quite often, but his were always very obvious. And it wasn’t until later in life that I learned they can be something as simple as staring off into space.
Anyways, last November she had a very violent seizure, where she did drop to the floor from walking and it was completely not expected and caught everyone including herself off guard. She was “out of it” for quite some time after she stopped seizing on the ground. She doesn’t really remember what happened or how she wound up on the floor. All we could come up with in hindsight, was the fact that she had been walking around the house with this little toy ball that has a flickering light inside it and its motion sensored and she had it with her literally all day that day.
The most scariest thing about all this, is that no one saw her fall so nobody is able to know whether or not she broke her fall by placing her hands down first or how she fell. All we did was hear her mumble something and then a loud thump! And everyone came running. I wasn’t even in the same room but I heard my husband calling her name repeatedly and I came running. The other scary thought was what if she had been home alone?
All her medical tests came back showing she was positive for epilepsy, which was disappointing because we were not expecting that news. They didn’t show any head trauma so I guess that was good.? Since we were unsure how she landed and if she hit her face or skull. We do know she bit her tongue since it was bleeding. Now she has frequent migraines and seems to be bothered by continual flashing lights. She brought a simon says game and can’t even enjoy playing it because as the game progresses the lights flicker more and faster which bothers her. She’s still one big kid at heart and I feel empathetic for her because the impact this seizure has had.
On a more positive note, I am extremely proud of her for pursuing her new job that she began recently, just in time so she doesn’t have to be laid off and unemployed. I’m proud that she is not allowing this new diagnosis to “cripple” her from moving forward or robbing her from her quality of life. I think it’s very safe to say that all my children are warriors. And we are in this war together fighting different battles everyday.
Anyways, I wrote this article today, to bring some awareness to others who may think their child is spacing off or ignoring them on purpose. Look for early warning signs. Ask your doctor. I’m not implying every single person who spaces out or ignores others is epileptic either, and I’m not a healthcare professional but I am just sharing my experience as a mom with a child who has epilepsy. By the way, she also has mild ticks (jerking twitches). You know your child best, than anyone else. Use your gut instinct, its usually right. I space off at times but I don’t have epilepsy.
Finally, I’m putting all my faith in God to protect and watch over her when she is away from home and at work and when she finally is able to get back to driving. I’m praying and hoping she is healed from ever having it occur again. If God did it for my youngest son, I know he is able to do it for my youngest daughter.
Thanks for listening!
I’d also love any feedback from anyone who may have had that same concern either about themselves or loved ones driving again after a bad seizure and waiting period and what your experience has been. Hopefully nothing too scary.
