Welcome to an exclusive club of mom’s you never knew existed. We want to welcome you to the Special Needs Mom club. This club is exclusive because not everyone gets to join. You are here because your child is unique and has something in their life that deems them “abnormal” by society. However, in our club, you are as average as they come. I have had the chance to talk with other moms in this group, and we talked extensively about what the most important things we thought you needed to know about your journey as a Special Needs Mom. All of us wished we had advice in the early days, and as we have grown, we have learned a thing or two about how to parent our children and manage the special needs life. The most important thing we want you to know is we are so glad you are here, we will be there for you when you need us, and no one can ever kick you out of our club.
Here are some other items that will be important to you as you embark on this journey:
Take Time to Grieve
The very first days of your crash course in parenting a child with special needs are going to be very overwhelming. Somedays it will feel like your head is going to explode as you try to catalog all the information you are learning. Doctors, therapists, and specialists will throw terms at you that you never knew before your child, and it will feel incredibly overwhelming. It is normal for all parents in this situation to feel as if they will never be able to manage their child’s care. During this time, it’s important you are gentle with your heart and your soul. There is no manual for raising a child with special needs, and it will take you time to learn everything. Even though the professionals throw all the data at you, it doesn’t mean you have to make sense of it right now. There is time for you to learn, grow, and understand the best ways to help your child. Take the time in those very early days to take a deep breath, and to remind yourself that it’s ok to cry, feel sad, and to mourn the dreams you had for your child. All of us that are in this world had dreams and hopes for our children, and for most of us, none of that included our child having challenges that will make their life harder. Grieving is natural, needed, and an important part of your journey in parenting your child. Taking the time to grieve will enable you to get to a place where you kind find acceptance for your new life.
Be Patient and Forgiving with Yourself
Children with special needs have unique challenges most of us have never faced, and we don’t always understand why they are behind their same-aged-peers. When you begin the journey with your child, you are both going to be brand new to the world. In the beginning, it is going to be normal for you to feel resentment, jealousy, anger, and frustration when you see children your child’s age doing things your child cannot accomplish. You might have thoughts and feelings about your child’s future that make you feel sad, upset, and fearful about what is to come. Some days you simply shut down and can’t speak to others about those feelings because you will feel terrible for feeling this way. Trust us when we say this, nearly all mothers that are in this world have had those thoughts, feelings, and emotions. It will feel very isolating in the beginning because you won’t have the best support, family and friends won’t always understand, and you will be completely overwhelmed by the emotions that rush through your mind daily. Be patient with yourself, and don’t force yourself to accept things faster than you can process them. Take the time you need to get comfortable with your place as a special needs mom. Initially, you might push people away. Isolating is a typical part of the healing process.
Develop a Thick Skin
We wish we could say this is going to be easy, but it’s going to be a battle for you and child every step of the way. You are going to need to learn to dress in armor every day when you wake up. There is a lot of ignorance in the world about disability, disease, and chronic illness. The comments, questions and looks of strangers are going to start almost immediately. For you to get through all of these moments, you are going to have to develop a thick skin. People that aren’t a part of this world don’t understand, won’t understand, and are going to say and do offensive things to you and your family every single day. If you want to be the best parent for your child, the best thing you can do is be strong for them and not let these comments, looks, or behaviors affect you. We know this is often easier said than done, but we promise you that if you allow all of it to bother you that you will be upset every moment of every day. In those moments you feel angry at others, try to remind yourself they aren’t saying these things from a bad place. The truth is the comments you are going to hear are coming from an ignorant place. It is ok to be bothered by the comments, but try not to let any of this destroy your happiness or peace.
Become an Advocate for your Child
As time moves forward, your knowledge and skills to parent your child will increase. You will begin to know your child better than any professional, teacher, therapist or doctor will ever know them. When you get suggestions from professionals that you know are not right for your child, push back and use your voice to advocate for your child’s needs. For many professionals that work with your child, your child will be a dot on a graph, a line on a curve, and a percentage on a development scale. They might not see what is clear as day to you. The best thing you can do is trust your gut in those moments and speak up for your child. Some of the recommendations you will hear will not feel right in your gut, and if that happens, always trust your gut. Your instincts in parenting your child will never, ever be wrong. The limitations that professionals set for your child are not actual truths for what your child can become. No one has keys to the future or a crystal ball that says exactly what your child will become. The fact is that your child will become exactly who they are supposed to be despite what professionals “think” they will become. Your child will surprise people, inspire people, and show people that statistics are actually for losers. Children with special needs aren’t statistics, and they inspire people every day as they show us all how to achieve what everyone said was impossible.
Never Give Up
I promise you that you are going to feel exhausted on this journey. There will be days that it will feel even impossible to go one more day. However, you are your child’s voice, advocate, and their mom and they need you to be strong. Being strong isn’t always going to be easy for you, but it will always be worth it for your child. You will be tested every day, and you will fall into your bed at night in complete exhaustion. Some days it will feel hard to keep going, but you have to keep moving for your child. In those times, take the time to cry, scream, and have a pity party. Then when you are done pull up your pants and get moving because your child needs you at your best. Find a circle or a close person to give you strength when you feel like you can’t go another day. Read devotionals, self-help, or pray to God for the strength to keep going. Take a break with a warm cup of coffee or tea. Practice some deep breathing in your most stressful moments. Make time for exercise if it helps you relax. Do whatever you need to do for yourself, so you have the energy and will to keep going. No one said this was going to be an easy journey. We can assure you that it will be worth all the tears, energy, and exhaustion.
Finally, we want to remind you that we will be here for you as you navigate this journey. You can find us online in support groups, in waiting rooms at the doctor or therapy, or you can find us hanging out at special needs preschool. We are all looking for friends, and all of us want you to be a part of our lives. Our group is a tight one, and there is nothing that can break the bond we share with one another. Remember that you are not alone on this journey. There are so many of us that are so excited for you to be here, and we can’t wait to help you take the next steps in learning how to be the most awesome special needs mom out there!