Parenting children with special needs produces a sense of uncertainty and grief. Parents of special needs children possess the same hopes and dreams for their children as parents of typically developing children. We concern ourselves with their welfare, want them to be happy and thrive. In the case of special needs children, the hopes and dreams for their future that we conjured within the confines of our minds while they were in utero are shattered the day a diagnosis is given. Our children are still our children who will be loved unconditionally. You will climb to the ends of the earth to ensure they receive the best services possible. They will be supported, loved and advocated for with the fierce love that only a parent can possess.
Original expectations of what our children’s childhood and needs are must be restructured. While restructuring our initial impressions regarding your child’s identity, you must also restructure your own. Parenting children with special needs can create a sense of guilt, uncertainty and fear. Parenting a child with disabilities can create a sense of lonesomeness. It can be a truly isolating experience. Many parents do not express their grief or fears. Parents who are dealing with guilt, anger and creating a new sense of (normal) in their family may worry that expressing angry or negative emotions will portray them to the public eye as an incompetent parent. This merely stems from their own feelings of incompetence.
This feeling of incompetence is not reality. Any parent who loves their child unconditionally, tirelessly advocating for them 24-7, supporting their child’s every sign of progress and never giving up on believing that child will progress beyond anyone’s prognosis is displaying a level of competency like no other. To experience days with your child when falling on our face and sliding back a few steps is the norm yet standing upright and moving forward the following day is indicative of strength not weakness. There is no stronger driving force than a parents love for their child, special needs or not. The silent emotions such as guilt, grief even anger may also be hidden for fear of judgment from family, friends and society at large.
We may hide feelings from others to protect them from what is perceived as negative and unacceptable feelings. Perceiving your emotions as negative and unacceptable may also be fueled by individuals who advise you to be strong, look on the bright side, stay positive and occasionally even tell you to get over it and deal with reality. Remember, many who tell you to deal with reality are individuals who do not walk in your shoes. They have no idea what your reality is. It is of the utmost importance to talk to others regarding your anger and guilt. Special needs parents are human as well and possess feelings. It is also acceptable to have those feelings. Never let others minimize them. Educate family and friends on special needs. If you are not comfortable talking to them, provide information via leaflets, books and videos on the topic.
Find or create a support group to share your daily struggles with others who are experiencing similar challenges. If time constraints limit opportunities to meet on a regular basis with other individuals, consider taking advantage of technology. Perhaps group Skype chats or Google hangout meetings would work. These are just a couple of examples. It is well worth the effort to meet with others who understand your challenges. You will feel a sense of kinship rather than loneliness when supported by understanding people. Sharing your stories can be emotionally freeing when you realize that you are in a no judgment environment.
You are not walking this path in darkness nor alone. No child will have the same specific challenges as your child. No parents will be dealing with the same emotions and challenges as you. However, meeting individuals with similar challenges will help create a circle of support and friendship. Despite differences in special needs families, similarities abound. All parents struggle from insecurities, guilt, and uncertainty for their child’s future. All children want to be accepted, included and understood by peers and society.
Please attempt to remember that you are a human being composed of a plethora of emotions. Find a trusted nonjudgmental group of people who will support and understand you when anger, frustration or guilt arises. Those emotions are warranted and need a safe place to be expressed. Venting under the right conditions can be emotionally and physically healing. You can not be super parent or perfect constantly. Missing a siblings ball game or play because of therapy or medical appointments for your special needs child does not make you an incompetent parent. The fact that you feel guilt arises out of the every fact that you DO love your children. Unfortunately, you cannot be all things to everyone at the same time. Cut yourself some slack for the humanness factor. If your house is in disarray, it is not indicative of a disorganized parent. It is merely representative of a parent who has placed priorities on familial demands over a couple of dust balls.
You will make mistakes. This again is a sign that you are mortal. Do not beat yourself up for that which is out of your control. You are not super human individuals capable of parting the Dead Sea. Do not compare yourself with parents of typically developing kids. Your kids and family are different than theirs but no less worthy. Sleepless nights with children, midnight showers when children are finally asleep, eating standing up while making sure a child does not bolt out the door or get injured take their toll. Notice your child’s accomplishments and bask in the glory of them. It is extremely easy to focus on what your child cannot do in comparison to little Johnny down the street who road a two-wheel bike at age four or walked at 10 months. If your child was never expected to talk yet uttered their first words at age six, tell the world. Special needs parents deserve bragging rights for their children just as parents of typically developing children do. Our kids milestones may appear much later then neurotypical kids. Those milestones are huge to a special needs parent, express your pride to the world.
Remember, you know your child and their needs better than anyone. Speak up to professionals, educators and society at large. Never underestimate what an awesome skilled parent you are! You have what it takes. After all, you made it this far. Every time you feel like you cannot go on and fall on your face, recall how many times that you have stood back up and kept on moving.
I am a published author and focus on books pertaining to autism and Aspergers Syndrome. I have had special needs articles published in several magazines. I have been interviewed several times in print, on pod casts, and internet T.V. regarding the autism spectrum. I have presented autism workshops to staff, management teams, and parent groups. I offer tips on curriculum development and behavior modification within the classroom and through in-services. I am certified by the Department of Early Childhood Education as a lead preschool teacher, an infant and toddler teacher, and site coordinator qualified to manage school age programs. I have recently ventured into public speaking engagements to educate both parents and educators on autism and Aspergers Syndrome
I want my experiences and challenges to be used productively as a learning tool for other parents and for educators as well. When my son was diagnosed with Asperger’s a decade ago it was a foreign word among many parents and professionals alike. I fought for help never giving up. Through my books I wish to help parents feel like they do not walk in the dark, that they are not alone, empower them and that there is light at the end of the tunnel. I also want to educate society at large on the topic of the autism spectrum. I believe all parties involved need to work as a collaborative team in order to insure a special needs child’s Amazon.com at Mari Nosal : Please stop by my site at Amazon Books and check out my published books on autism aspergers special needs and more you like my articles, aside from being the parent of an adult with Aspergers Syndrome/ A.D.D and an educational professional, I am also a published author of many special needs and autism related books written to inspire and support parents, families, educators and society at large as well. Please stop by and check out my books on http://tinyurl.com/kdspqy9
Mari Nosal M.Ed.