Special Needs Siblings- What Life is really like

As you know I have 5 children, 4 of them are "normal". Which simply means they do not have Special Needs. The siblings to a child with Special Needs has a lot of work on their plates. They have to adjust to a schedule and life they didn't choose. They have to help care for a Special Needs sibling, which is stressful and exhausting. My kids have to put their feelings aside and realize that their brother Levi can't handle the excitement, questions and interactions they want from him. They have to adjust that our lives aren't like their friends and we can't always do everything their friends' families can do. It has been so very tiring and exhausting on my other children. I see it everyday in their faces, in their behavior at home and when they explain their feelings to me.

(Tanner, Mckay, & Levi cashing in their free personal pan pizzas for good grades)

I have created a list of 5 ways to help Support Siblings of a Special Needs:

1.) Tell the siblings in words how you appreciate them.
I know I do not do this as often as I would like. I know that they need it more then I have expressed to them. My children are a HUGE help in my daily life, even the smallest tasks aren't over looked. Sometimes I forget to tell my children how much I appreciate them. I know that when I express my appreciation to them in details they love it.  I simply say things like "Thank you so much for making Levi a snack after school. I really appreciate you for serving your brother."


2.) Apologize that their schedules are chaotic.
It is not fair to the siblings schedule to be chaotic. They did not choose to have a brother with special needs and they did not choose that our schedules really have to revolve a lot around Levi. It's not fair to them and they need to hear that. I want them to know that I agree it isn't fair and I appreciate them for trying to adjust.  I have simply said "I am sorry our schedule is chaotic and stressful. I can tell you don't appreciate it and it stresses you out. I appreciate you for trying your best."

(At a Private Screening for Incredible 2 with our Orthodontist)

Tanner, Mckay, Levi, & Me

(Brayden & Levi spending time together after school)

3.) Spend One on One Time with Each Child.
I cannot stress this enough! When you have a Special Needs child in the home, your other children tend to get pushed to the side, because you are so busy being an advocate to your Special Needs child. It is not fair to them that you are exhausted and drained. It is not fair to them that you are overwhelmed and don't have enough time for them. They need that connection and love from you. What works best in our home is to schedule time out on the calendar. We agree on a date and time that works best for both of our schedules. Then we plan out what we are going to do.  Sometimes we watch a movie together, kids choice. Sometimes we play card games or board games together, kids choice. Sometimes we go shopping together and go out to lunch, listen to the kids talk about their day or vent.  How I get them to hang out with me, I simply say "Hey Brayden, I know I don't spend enough time with you, can you look at your schedule and I will take you out to lunch? What day works for you? Where do you want to go?"

(Aaron & Mckay at the Diamond Backs game- we were given 2 free tickets from Grandma)

4.) Connect with your children.
 I try to reach out to my children, one on one and let them know how much I appreciate them. I do not get the chance to do this everyday, but I try my best to speak to them with kind words. Give your children hugs, kisses on cheeks, words of appreciation, pats on their backs and smile at them.  When I do these things with my children, I can already tell they feel appreciated and loved. I give my teenagers Brayden & Brooklyn and well as my younger boys hugs and tell him how much I love him. When I talk to them in a kind heart and loving tone, they never push me back. My children have stressful lives at school and at home, I don't want them to ever feel like they aren't loved or not appreciated. I have said "Hey Brooklyn, How was your day at school? What was your favorite part at school today?"  "Brayden, what's your plans this weekend?"

(Brayden sleeps a lot in the car. I decided to snap pictures at every chance I get)

5.) Check in with them daily. 
Ask them about their day. Go through their schedule with them. I always tell my children that I love them before they leave for School. We strive to have prayers and scripture study before school (it doesn't always happen).  We carpool to school right now, and when I pick up, I welcome my children and carpool buddy in the car and listen to them telling me about their day on the way home. I ask about upcoming games they are playing in, I ask about upcoming tests and ask if I can help them study. I ask them how school was. I feel like it is always important to check in on my children and make sure they are okay. I want them to feel like their feelings and life matters, even though I have a busy schedule. I can make time for a check in.

Your children will feel loved even if you can do this checklist once a week. They want and need to feel that connection with you. It is something, us humans crave. Do your best! They will appreciate you for trying and asking.

A Special Needs Family

Looking at a family who has a child with special needs looks a bit different then you'd think I bet. Special needs children have different disabilities, some look "normal" and some do not. Some are capable of having full mobility and some get cool wheelchairs to stroll through life.  What you don't see is behind closed doors, especially if the family has other children that are "normal". What you don't see is a life they didn't prepare for or expect for their future.

My husband Aaron and I work tirelessly and serve with all our energy all day long out of love for our children. We do research, pray and fasting and search for answers for our family. We work all day long to tend to all of our children's needs and devote time to them.

Once you devote more time and energy to your child with special needs, you will find that your "normal" children will feel left out and get pushed to the side. You don't do this on purpose at all, it just happens and it's not fair. My "normal" children have to adjust to having a more "zombie Mom" who runs out of energy extremely fast. They have to adjust to lots of doctor appointments, babysitting their siblings a lot more then usual, even when they don't want to. They have to adjust to a more busier and chaotic schedule, a messy and stressed out house. It's not their faults, they don't get a choice, and it's not fair.

What we parents get in return is more melt downs, crying children, arguing and tired children all. the. time. Our house is never clean and I have learned to let that go! What I think is important to learn from this is if you've been wondering how to help someone in your church, on your street, or a friend that has a special needs child is to just love them. Pray for them and love them.

(Mckay, Levi and Brooklyn sleeping in Brooklyn's room. This night Brooklyn was able to help Levi after he woke up from having a seizure in the middle of the night. She was able to help get him back to sleep. I am so thankful that she was able to be there for Levi.)

If you want to help alleviate the work for the friend/ family member, here is a list that has worked miracles in our family:

* Pray & fast for the family. It is free and it works.

*Bring in Dinners. Arrange with parent on days that work best. 

This will take one stressful thing off the parents to do list.

*Drop a treat by randomly for the family to enjoy. 

This lets the family know you are thinking about them.

*Text the friend letting them know you are thinking about them. 

*Ask the family to a park date. Have your family there too and just hang out and talk.

*Ask the Mom out for a Girls Night Out.

 It is pretty isolating when you are a parent to a special needs child.

*Drop off money donations or gift cards. 

You would be shocked at how much money is spent on medical bills, doctor appointments, medication, surgery, therapy, etc. 

*DO NOT make empty promises!!

This is the most disappointing and heart wrenching item that is so hard to look past!

How To Interact with a Special Needs Child

You might have a friend or a family member that has a child with Special Needs. You might feel disconnected with their life and want to try to feel the gaps with trying to be in their lives more. You might feel like you’re not sure what to do, but you want to help. I promise if you ask the parents of the Special Needs child how to help, they will give you the best advice of how to connect with the child, because they live this life every day. I promise if you ask with a kind heart and soft words, your love will feel appreciated. We as parents, can give you tips and advice that has worked with Levi and most likely will work for you too. I have created a list that works at our house. We use this same list when the siblings talk with Levi and when we want to interact with Levi.

(We are by the Lion's Gate at the Phoenix Zoo)

Please understand that a Special Needs child will not accommodate to you, and adjust to what you need. You are the adult and you will need to accommodate to the child. This is not a request that works for the adult, it simply is what works for the child.

*Ask the child how they’re doing today. 

“Hi Levi, how was your day today?”

*Ask the child if they have a favorite stuffed animal. 

“Levi, I heard your favorite stuffed animal is named Stuffy. Can you show me him?”

*Ask the child what their favorite toy is. Ask them to show you the toy.

 “Levi, I heard you love trains. Can you show them to me?”

*Sit down and speak to them at their eye level, show you care with a loving tone of voice. 

Be patient and listen to them.

*If they have a pet, ask them about their pet. 

“Levi, I heard you have two turtles. Can you show me them?” 

“Oh he is so cute, I bet he makes you happy.”

Please keep in mind that children with Special Needs gets over stimulated easily and can have melt downs. They might not answer you when you’re wanting feedback right away. Be patient and try again.  Make sure not to pry too much, there is a fine line before you over stimulate them. If you want to interact with them, play with them. It could look like building legos together, tossing a squishy ball together, playing with trains together. Ask the parents for more ideas. Trust me, it will mean the world to the child if you play with them. It will help heal hard hearts, it will make you feel good that you served the family, and it will make the child feel so happy.

(Brayden is carrying Levi around on Christmas Eve when we visited the Temple Lights. Do you see that smile on Levi's face, he is so happy).

"But love ye your enemies, and do good, and lend, hoping for nothing again; and your reward shall be great, and ye shall be the children of the Highest..."

Luke 6:35

"Thou shalt not avenge, nor bear any grudge against the children of thy people, but thou shalt love thy neighbour as thyself: I am the Lord".

Leviticus 19:18

How to Treat a Special Needs Child

  (At the Dinosaur Exhibit while visiting the Phoenix Zoo)

Treating Special Needs Children is not something you just know, for most. It is something you Learn. Some people are nervous of how to treat and talk to a child with Special Needs. Some people are nervous of saying the wrong thing. If you've been wondering how to talk and treat a Special Needs Child or a child that has Special Needs, look at their siblings and parents, they are the best example. We know we aren't the perfect examples, because we are all human and their siblings are kids as well, they are growing and learning too.

(Learning about Fossils while visiting the Phoenix Zoo)

Things to know that never is okay:

• Talking rude to child
• Shaming child
• Cutting child off in mid-sentence
• Ignoring them, not talking to them
• Teasing, laughing at them 
• Making the child feel like their feelings do not matter.

Special Needs Children are extra sensitive and pick up on when someone doesn't like them, when someone doesn't care about them, and when someone is making fun of them. 

It is very frustrating as a parent and siblings when children & Adults ignore the child with Special Needs. As a parent, I am quick to address my own children to treat Levi nice and to remind them to be an example to their friends.  Now my children are not perfect at this, but we strive to help others understand and help Levi feel accepted. 

As I type this, it is also hard for me to say that it is difficult to teach other children how to be nice to Levi who has Special Needs. I sometimes have to correct how to treat and speak to Levi with other kids who do not understand. I do this, because I am Levi's advocate and he cannot do this for himself. I do this, because he is a spirit from Heaven and one of Heavenly Father's children. Lastly, I do this because I love him and want him to be treated with Love.

Patience is Key when working with children, but especially when working with Special Needs children or children who have Special Needs. My husband Aaron is always a huge example to me with his patience! He has been patient with me when we were dating, through my bride-zilla moments as we were planning our wedding, and with each child we brought into the home. When stress rises, he is extra patient and reminds me to be more patient. I know that everyone doesn't mean to offend, we know that. We aren't perfect with our patience either. It is important to work together and know that with time and patience we can help children with Special Needs feel comfort, acceptance and Love. 

"Thou didst bear all these things with patience because the Lord was with thee."

 Alma 38:4-5.

"Continue in patience until ye are perfected. " 

D&C 67:13

"Jesus said unto him, Thou shalt love the Lord thy God with all thy heart, and with all thy soul, and with all thy mind."

Matthew 22:37

A Dark Long Road...

This depressed Mama decided to go back to work part time to break away from children and have a life outside of the home in 2013. Levi was 18 months when I went back. This was the beginning of my dark long road that I wish SO much I could delete the first year of it. However, I know now that that HARD year lead me to who I am now and what I have learned. It has shaped me and is still not  easy or perfect.

We were stressed with what was on our plates, with work, the amount of children we had, our callings, etc. I was not happy and looked for happiness and feeling like a person instead of just a Mom outside of the home. We were gathered in our kitchen, it had been a long day. I looked over and saw Levi passed out in Aarons' arms, his arms and legs stiff straight completely unresponsive. We called 911. The paramedics came in and whisked him away with me in the ambulance. He stayed over night for 4 nights.  It was so scary and hard. I stayed by his side every second I could. Once he fell asleep, I quickly whisked to the snack bar and shoved food in my arm and hurried back to his room, so I could be there for him if he woke up.  I slept in that torture chamber they call a chair/bed and held him in my arms, despite what the nurses said and wanted to keep him in that huge crib that looked like a prison.

(This was the weekend we just left town, went camping on our own and went cold turkey off all seizure meds)

We followed and trusted what the neurologists said and hopped right onto giving Levi anti-seizure medications to stop the seizures from repeating. Once we were released, we stayed on that routine and follow up care, adding more medications and maxing each medication and then adding more for a whole year. He was at max dose of all four medications when we wound back at the hospital facing a helmet for my child who was pretty much a vegetable. He didn't communicate, want to be held or want to be touched. The medication never did stop my sons' seizures and we decided to go a different route. We went with an herbalist and went cold turkey off all medications and slowly came back my sweet loving Levi that I missed so much! We were seizure free for 1.5 years and doing great, until he had an accident on the trampoline and fractured his wrist. The seizures were back. This time I learned my lesson that I needed a new neurologist, because the previous one just wanted to push more medication on my boy. She didn't listen to how we felt as parents, and how much Levi regressed when he was on the medication. We continued to go the our herbalist, named Harriett. She was a life saver that restored my testimony and faith that miracles do happen.

(Levi was at the PEMU with Aaron trying to get more answers for Levi's diagnosis)

I learned that I completely hit walls and just gave up on things when I hit my 'this is too much for me to handle' mode.  I completely stopped going to the Neurologist, because I didn't like my old neurologist and we weren't on any medication. I honestly thought Levi would just grow up and get better.  I learned to just love Levi and accept him for who he is. Flash forward to August 2017,  Aaron found a new Neurologist that had many good reviews. I was frustrated of going back down this road again. I knew what I could handle and I couldn't handle more disappointment, more Dr appts that lead to unexplained seizures. Aaron took him to all his appointments and took him to the PEMU (Pediatric Epilepsy Medical Unit) and stayed with him through the whole testing. He took him to the follow up care and got everything aligned for me to do homework at home. More tests came back with unexplained seizures, but this time we had options and this Neurologist didn't push medication on us. He listened to us and examined Levi. He did speak upfront with Aaron and told him that he will always be delayed.  We took his words into consideration, but I honestly thought he would grow out of his Epilepsy.

Fast forward to him being 5, graduating Special Needs Preschool and getting ready for Kindergarten. I prayed for Heavenly Father to change Levi and bring back a "normal" child. I begged for Levi to not have these seizures and to grow out of them. I prayed many days and nights for a different life and BEGGED my Heavenly Father to him to be "fixed". A dear friend of mine just told me recently that His brain is wired with a dysfunction and he will never be "normal" . This will never go away. I will always have a special needs boy. I had to learn to accept Levi for who he is. I had then realized that Levi was sent to earth to teach me and my family a lesson. WE need to change and cater to him. He is a walking angel on earth and we need to learn from him.

(Levi, Tanner, Mckay & I went to a Hopekids event. It was Lego land Discovery Center and Sea life Aquarium)

We are still learning and still growing. We still do not have answers why Levi has Epilepsy, but we are trying our very best at helping Levi have the best life. We are trying our best to be great advocates for him. We have accepted Levi for who he is and his special needs. I am not begging Heavenly Father to "fix" Levi anymore. I am trying everyday to help our family and Levi have the best life we can. Our dark long road is not over yet, but it doesn't seem so dark anymore...I am starting to see a glimmer of light here and there and for that, it gives me hope!