Dear moms who are trying to keep it together

One of the hardest things about being a mom is holding it together when all you want to do is breakdown and cry.

I see you out in public fighting back the tears. Tears that have been building up all day because you’re just exhausted.

You have been up for hours with no sleep because your child is going through a sleep regression.

I see the frustration in your face that you’re tired of being judged. Judged that you’re doing everything wrong.

I can see the pain in your eyes from hiding from the pain of dealing with severe aggression. Feeling scared to talk about the aggression issues because you’re scared of being judged.

Or worried people will then judge your child.

I know the feeling of letting yourself go.

No point doing your hair because you eventually will be throwing it up to handle a meltdown.

Or putting make-up on because you will be crying most of the day.

I see you moms.

I know this journey is hard. No one truly understands unless they live it each day.

It’s pointless to discuss how your feeling to your neurotypical parent friends what is going on.

They would never understand.

The feeling of isolation taking over.

Anxiety is at its all-time high.

Depression begins to ruin marriages or friendships.

We special needs moms seem to have our child’s autism diagnosis grief cycle on repeat.

We began to blame ourselves.

Began to blame others. Ask God why us.

Mom’s it is okay to admit this is hard. It’s okay to have breakdowns. It’s okay to cry and be emotional. It’s okay to take medication to help us feel better.

There is no shame.

We all have daily battles every day.

Hard is hard.

We just have different ways of dealing with our hard.

That is okay.

Mothers should never feel ashamed of their feelings.

As a fellow special needs mom, I want to tell you that you’re all beautiful, strong, and inspiring women.

You advocate hard for your child. You have sleepless nights to make sure they are provided all the resources, therapies, etc.

You put yourself on the back burner to make sure your child has everything they need to succeed.

One thing I can’t stress enough is special needs moms need to take their mental health seriously.

We have to continue taking care of our children so we need to be healthy as well.

Mothers, please do not give up. You all are a HUGE inspiration.

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Allow yourself grace.

”Just because you carry it well, doesn’t mean it’s not heavy.” -Unknown

Forgive yourself, you’re not perfect. You will make mistakes. You will be hard on yourself. You will second guess yourself if you’re making the right decision of what’s best for your child. Special needs parents have to navigate through a path that sometimes has never been walked through. You’re thrown into this path all alone. The burden of stress is vastly high.

The feelings of isolation are compelling. All these emotions on a parent with a child with special needs can take a toll on their mental health. Self-care is usually thrown to the side. Sadly, special needs parents at times do not focus on their mental health.

I can’t stress enough how crucial it is to make sure your mental health is in check. Never feel ashamed if you have to go see a doctor, therapist, or counselor. Never feel ashamed if you have to be prescribed medication. Mental health is vital to continue helping our children with special needs. They need us!

Show yourself grace, you’re still learning. Show yourself patience, you’re on this journey.

Sibling Bond and Autism

Growing up my biggest dream was to be a mother. Our son Kash is such a blessing to my life.

Research suggests close sibling relationships are associated with better mental health later in life. The nature of autism can make closeness difficult. People with autism often have difficultly identifying and expressing their emotions, as well as understanding how others are feeling.

My husband and I had many conversations to determine if growing our family would be an option. We had a lot to consider compared to our friends with their families. We had to worry if Kash would adjust to a new sibling. Would he become more aggressive? Will he regress all the skills he has learned? Would we have enough time? Those questions hit us extremely deep. We wanted to make sure we made the right decision.

We came to the determination that we have Kash in the best therapies. He has all the specialist possible for his care. We will continue to always advocate for him. We wanted Kash to have a sibling. We wanted Kash to experience a sibling bond. We had to stop thinking about the worse and come to the realization a sibling may help Kash.

Our lives would forever change in 2020. The pandemic hit and we found out we were expecting. My very first appointment came around and I was able to bring Kash with me. This appointment happened before the shutdowns and visitor restrictions. I was about six weeks pregnant at the time. I tried to explain to him at first what would happen at the appointment. I used social stories and visuals to try and prepare him.

Any type of doctor’s office scares him. It does not matter if it is not for him. He has had to visit a lot of doctors growing up so it always frightened him. I can’t blame him because it seemed every time he would have to see a doctor he would have to get blood taken or a procedure.

Walking into the room for my first ultrasound was exciting and also scary. My husband and I suffered miscarriages before so it just always made us feel uneasy. Kash was very anxious during the appointment. But once they started the ultrasound and seeing the baby on screen was an emotional time all around. Hearing the heartbeat made me cry tears of joy. Watching Kash sign, ”baby” when I pointed to the screen made me even more emotional because I felt he understood what was going on.

Our sweet girl decided to come into the world at 34 weeks. Thankfully she was healthy and only spent a week in the NICU. Bringing her home to meet Kash was a moment I will forever remember. Seeing his baby sister for the first time just lit him up. I knew right then and there their bond would be unbreakable.

Prayers answered

First off thank you all for all the prayers for our sweet Kash. Many of you know Kash had a colon biopsy a week ago. They were concerned it was Hirschsprung Disease. It would consist of pretty intensive surgery. We received the results back and thankfully he does not have it!!!

He was diagnosed with chronic idiopathic constipation (CIC) which is severe constipation. He will eventually need surgery but it won’t have to be as intensive as they thought. 💙

Reflecting on 2020

2020 was a rough year. I believe a rough one for everyone in the world. It was a time therapy was taking from my child. Continuous fighting with insurance companies to make sure our son is provided the best quality of care.

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The isolation felt more intense. Special needs parents already feel isolated then add on top schools and therapies were being shutdown. The unknown of when they would be back.

Learning the new norm of wearing a face mask wherever you went. Working with our children with sensory needs to wear a face mask was challenging. Trying to find ways to explain to my nonverbal son that we have to stay six feet apart from people in public. We have to wait for the elevator at the doctor’s appointments because only four people could be on it. Waiting is already hard for them then add all the extra stuff is plain HARD.

There has been a lot of tears shed in 2020. Some of them have been sad tears and some happy tears. It was challenging we could not see our families. We had to spend the holidays alone. Welcoming a new baby girl to our family and Kash not being able to go to the hospital to meet his baby sister. Grandparents are not able to visit us in the hospital.

Overall 2020 was extremely hard.

I am trying to change my mindset on how 2021 will be for our family. I’m trying to stay positive. Continue to think everything happens for a reason. We may not understand the reasoning now but will lead to greater things.

Emotional challenges and being a special needs mother..

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It’s a cold gloomy day. The sun is nowhere in sight. I can start to tell it is going to be a hard day. One of those days that nothing will make you feel better. The feeling you could cry at any moment.

I am running around to make it to my son’s therapy. Making sure I make it to my appointments. Trying to balance being a mother, wife, friend, and graduate student.

Depression and anxiety are real. No one understands what a special needs mother goes through.

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We have to fight for services. Find the best doctors and specialists. Calm them during meltdowns. Be a punching bag at times.

It’s okay to admit things are hard.

It’s okay to admit at times we have no idea what to do.

We began to question ourselves as a parent. Are we providing the best therapies? Are we advocating enough? Are we being a great mother?

“A study conducted at the University of North Carolina suggests that “Mothers of children with autism may be prone to depression if they feel responsible for the cause or outcome of their child’s disorder…”. Fifty percent of mothers with children with autism had elevated depression scores, compared to 15 percent to 21 percent in the other groups.”

Dr. Dan Gottlieb of Philadelphia’s NPR station WHYY commented on the study. To paraphrase, he suggested that “mothers who feel they can never do enough for their child with autism are likely to suffer from depression.”

Why mothers feel this way?

Parents receiving a diagnosis of autism are also coping with the loss of many of their expectations of parenthood. At the same time, they are losing out on the “parent club” that may have sustained them—everything from exchanging playdates and childcare with neighbors to coaching the local ball team.

It can be tough to engage in normal social activity with a child on the autism spectrum.

It can be expensive to treat a child on the autism spectrum. Some families go into debt to support therapies that are not paid for by insurance.

A parent with a child on the autism spectrum may wind up quitting jobs they enjoy (and the income they need or want) to care for a child on the spectrum.

Many children with autism have a tough time sleeping and keep their parents awake all night.

As children with autism grow older, parents often face retirement with full personal and financial responsibility for an adult child who depends on them for everything.

How can you cope with emotional strain of autism?

Find support among like-minded parents of children with autism.

Seek respite care, so that you and your partner can get away together for a well-deserved break.

Seek professional help from a therapist with experience working with families with special needs.

Try journaling to relieve your stress.

It’s okay not to be okay.

Mamas, it’s okay to admit things are tough. It’s okay to admit you’re going through depression. It’s okay to be on medication to help. Mental health is so important.

Never forget we are STRONG.

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I am that mother.

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I see kids running together at the playground.

Laughing and chasing each other.

Telling stories to each other.

Their parents sitting together just chatting about their child’s accomplishments for the day.

Deciding on when their next coffee dates will be.

Things are different in my world.

I am the mom sitting alone. Drinking my coffee by myself. Thinking about the next therapy appointment.

Keeping track of my son’s bowel movements. Planning for the next trip for blood work. The list goes on.

I am that mom that doesn’t even try to talk to the other moms. They would not understand my life.

They honestly would not care or that is how I feel.

Every mother will deal with their daily struggles. Trying to get their kids to pick up their toys. Dealing with the back-talking. Their list goes on.

I get it. Being a parent is tough.

A typical parent from special needs parents is the opposite.

I am the mother trying to determine what is causing my son’s meltdowns. Keeping data to try and determine if I can find the cause of these new behaviors.

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I am the mother trying to stop my child from running into the streets. He has no sense of danger.

I am the mother trying to prevent my son from eloping from me.

I am that mother that is trying to balance all the therapy and doctor’s appointments.

I am that mother that is always advocating.

I am that mother that loses sleep at night worrying about the future.

I am that mother that always thinks about what will happen if I am gone. Will he be taken care of?

I am that mother that always wonders if my child will ever speak again. Will I ever hear “mama” again?

I am the mother that always fighting for acceptance.

I am the mother that HATES people that judge.

I am the mother that wishes life wasn’t so hard for my son.

I am the mother that wants people to be kind to everyone.

I am the mother that wishes friends wouldn’t disappear from my life.

I am the mother that wishes family would be more understanding.

I am the mother that wishes she did not have to cry every night.

I love being a mother to my sweet boy. I love how he lives every day to the fullest. I love how he does not care what people think.

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I love how he just dances like no one is watching.

I love how he laughs.

I love how he smiles.

I love how he wants to give me hugs when he sees me.

I love the boy he is.

Autism is just a disorder that comes with challenges, but it does not define who my son is.

He is a sweet, funny, and caring little boy. He loves dancing. He loves music. He loves hugs. He loves cupcakes. He loves swinging. He loves playing outside.

I truly love my son for who is.

Love Needs No Words

Here is my blue-eyed, blonde hair, sweet boy looking at me. He shows his love through his eyes. He may be unable to tell me he loves me verbally, but he shows me in his own special way.

Thinking back three years ago, life was a lot different. It was the start of our autism journey. It was the start that our life forever would change. He was not making any form of eye contact. He would not interact with peers. He would always want to be left alone. It was a point in my life that I thought my son didn’t love me because he verbally could not tell me.

He did not even try to show me that he loved me. I just felt so empty. Scared. Hurt. Those are just a few words I thought at the time. I felt things would never get better.

Here we are almost four years later, and my son has shown me a different type of love. A love that does not need words. That gesture and actions mean so much more to me. He has a unique way he tells me. A way that everyone can see even when the words I LOVE YOU are never said.

There have been countless times of aggression because Kash is unable to communicate what he wants. There have been times of so much frustration that, at times, I feel, does he still love me? Am I a great mom? Does he still love me? What am I doing wrong? I still have these feelings.

Then I take a step back and just look at his sweet smile after a rough meltdown. I feel his tightness from his hug. I feel his warmth that he feels safe with me. Then all those negative feelings go away.

Love needs no words.

Love is an expression of emotion. Always remember our children with autism have their unique way of showing love.

The Isolation of Special Needs Parents is Real…….

I am sorry I do not return your texts or phone calls. I am sorry I have to cancel last minute or do not make plans as I’ve promised.

I’m sorry I am not the same person. Since my son’s diagnose and his other medical issues, I am not the same person. I have noticed I have lost my spunk.

My life is so chaotic. I feel my life is consisted of being on the phone with insurance or doctors. I am traveling to different therapies, five days a week.

I barely have time to breathe; it seems at times. I’ve lost myself during this time. I forget who I am. It’s hard to see my once close friendships are no longer existent and some family has not checked in on us.

I get it. My life is not like theirs. They do not understand it. They do not understand I can’t always make birthday parties, holidays, etc. At times those events can be too overwhelming for my son.

I am sorry I have to pass. I am sorry for my past friendships. I am sorry I can’t visit that much: call or text. I understand I am not enjoyable to be around anymore. My mind is focused on other issues at the moment.

I am sorry I want to stay in most nights. I am on the road five days out of the week. I am beat. I’m worn out. I do not want to have to explain to people why I am not in the best mood or why I am so tired.

I’m tired of always explaining myself. I am tired to explain that special needs parents deal with so much anxiety. We are always on high alert. We can’t take our focus away from our kids. They need all our focus 24/7.

Isolation is real.

We are thankful for you all…

A motorcycle club is a group of individuals whose primary interest and activities involve motorcycles. When you think of bikers, your mind tends to think negative. You see bikers on TV, and they are always giving the worst representation of who they indeed are. They are still providing the perception of being criminals, mean, or emotionless.

THEY ARE WRONG…

Our family has had the honor of meeting some wonderful bikers who belong to a motorcycle club. They all have heart of gold. They all want to help families in need.

Our sweet four-year-old boy, Kash, has Autism and epilepsy. He is nonverbal. Kash displays a lot of challenging behaviors that affect his daily life. He has anxiety that can take over him. He has no sense of danger. The lack of communication and social interaction brings challenges for Kash. We wanted to find a way to help our son through these challenging times. We researched and found an autism therapy dog would be so beneficial for our son and family. The more searching I did, I found they are costly due to all the training. This made me feel defeated.

Then out of nowhere, this motorcycle club came into our life. They wanted to help our family. Their biggest goal was to make this happen for our family. They would go out every weekend to different places of business, trying to get donations. They organized raffles, bracelets, etc. They gave up time away from their families for two months straight. They held a benefit ride to continue earning money for our son.

They never gave up on Kash. They treated Kash like their own. They didn’t judge. They invited us into their families. We are so thankful for them. They have changed our family’s life forever.

Their hard work and determination made it possible for Kash to receive his therapy dog. We can accept his dog before Christmas. These groups, of guys and their families, will always hold a special place in our hearts.