There are more than 10 things that parents with special needs children don’t talk about, but these ten things come to mind when I think of life as a mom to two special needs daughters.
- We are always tired. When I mean always, I mean always! Our lives are filled with appointments, therapists, meetings, doctors, consultants, fear, worries and sleeplessness. We are physically, emotionally and spiritually tired. This weariness never leaves us because we can never separate from our story. Being tired is part of our life. If you know a family that has a child with special needs and you can make time to watch their children so they can do something restful, even if it requires sacrifice, please do so. You have no idea how much you will bless that family.
- Hollywood often gets it wrong. Hollywood either glamorizes, marginalizes, or demonizes special needs. The special needs category itself is broad and diverse and just as typical people are unique so also people with special needs are also unique. If you think you know what it’s like to have a child with Autism because you watched Parenthood, or you think you have an understanding about Down Syndrome because you have seen a movie with an actor who has DS, then you are sorely mistaken. If you want to know what it’s actually like to live in our world, befriend us and stay awhile. Enter in and see the beauty and chaos. It will change you for the better.
- Loneliness is very real. I have had many friends abandon my family along the way. People I considered brothers and sisters have dropped my family because it was too difficult to have their children play with mine or my girls just didn’t interest their child. We are rarely invited anywhere. Sadly I am not alone…it is pretty common amongst the special needs community to feel alone. You can be different and intentional by choosing to include these families and their children. You and your family will grow from it.
- We notice when you exclude our Kids. This picks up from the loneliness aspect. We notice when our children are excluded from parties and it’s very hurtful. Our children want to have friends and be included too. We recognize that it may take a little more effort to make it work with our children, but that’s kind of what friendship is about. It is also what you would hope if you were on the other side. You can be an instrument in teaching your children to value everyone. That’s pretty powerful.
- Often, the church has an issue with our children. This is a hard one. While I have a wonderful church that is committed to helping families with special needs, it is not common everywhere. I have spoken to many families who have felt the pain of exclusion, judgement and condemnation from the church because of their child. I have personally experienced people within the greater church community mistreat my own children or get bothered by them because they don’t act like they want them to or fall in line. For people in the church who struggle with special needs individuals or who have an issue with their design, I would encourage you to read Exodus 4:10-12.
- We never get a break. This may seem redundant but it’s not. If you can recognize that our life is difficult as you leave our company, then also recognize that is our story everyday. Making that connection will allow you to help special needs families with the freedoms God has blessed you with that we don’t have. Outside of a rare and unique person willing to take on our story, we never get time away or vacations with just each other as husband and wife. This is why there is a high divorce rate amongst families with special needs children- the stress plus lack of any rest can put a tremendous burden on a marriage. I have had people tell me about vacation after vacation they have been going on, and then also tell me my husband and I need to go on one yet did not offer to be a vessel to do so. They didn’t make the connection. I want you to. Sacrifice your abundance to help someone who lacks it.
- It’s hard on our other children. Special needs families often have children who do not have special needs. These children often get less attention due to the needs of their special needs siblings. They have to work harder and take on more responsibility and as a result, grow up faster. Sometimes they miss out on opportunities, activities, get togethers, etc. because of the lack of ability for their families to take them. It can be very hard on them. One way to really come alongside special needs families is to help facilitate opportunities for their non special needs children.
- People think they understand but they don’t. We have had to grieve a lot…for what may never be, for the child we had to say goodbye to, for friendships that have disappeared, for the loss of a dream that will not happen, for opportunities we had to let go of, for experiences we will never have, etc. We are always fighting someone or something for our children – everything from school to healthcare are battles. We long for things others often take for granted…like our children’s independence. I can’t tell you how many times I saw a mother yell at her child for something I wish Arielle was capable of doing. I have so many wishes…I wish Arielle was able to take dance classes, talk ad nauseam about something, have a sleepover or a non-familial best friend, or get married and fall in love. Outside of a miracle, it’s just not her story and I have had to grieve it to love the precious daughter I do have.
- Help is rare and support is limited. This is a big one. I have people who recognize that we need help and support but never offer to help in any way. They can see how difficult our life can be yet forget to step in and help out. They don’t recognize that’s our life everyday. This is why so many of us just warrior through it- we have learned that there’s not many people out there willing to come alongside us. Help and support are rare in the special needs community. People do not realize the tremendous gift you give to families like mine just by helping out. Some ways to help are meals, babysitting, encouragement, inclusion in activities, rides for our non special needs children, facilitating friendship for our special needs children, cleaning, etc.
- No, you can’t do it better. When you see us special needs parents and it looks like chaos…and the thought arises within you to judge, dont! I have 5 kids and it’s only my last two who have special needs and I have learned how different it is to be a special needs mom. We try very hard, every single day…we are doing our best. While all you see is chaos, let me tell you that in the midst of the chaos, something beautiful is happening.
Unlike many of you, our children may never outgrow their struggles so these difficulties will always be a part of our lives. We will always have to worry about their future and wonder what tomorrow brings. This is our story.
There are a lot of difficulties families without special needs children will never experience. It is true our life is harder. That being said, you can learn a lot from special needs families. We have learned to weather storms that most people would crumble under. We fail and rise every day. We wrestle with acceptance and identity in a way most people won’t. We fight against all that negative thinking and then some. We have learned to push past fear and worry to embrace hope and purpose. We have learned about compassion, patience, kindness, sacrifice, and unconditional love through our own pain and suffering, triumphs and victories, heartbreaks and tragedies.
You may come to my house and I may be weary, my house may be unkempt, and I will likely be behind on just about everything, but you will also find a family that is bonded deeply by hardship, love and faith. There is a richness that all the mess can’t extinguish. There is a depth that only comes from a life like ours. While my life is hard, I wouldn’t trade it for anyone else’s, nor anyone’s story for my own. I have learned to see the beauty amongst the ashes and have become stronger because of it. I invite you to come and enter in our story, learn and grow from us. Our beauty and our pain will change you for the better and teach you things you couldn’t possibly learn without knowing a family like mine.