Everyone's story is different. I am not married, but I have been with my significant other for ten years now and even though we don't have a paper legally binding us together. We both still share the same concepts on what Marriage is all about! Marriage is hard. Raising children together is hard. We definitely hit many low points together, but what happens when you are a couple parenting a special needs child or two? Like us, we are first time parents who happen to be raising medically fragile/ special need twins. Many factors can cause a couple to lose sight of themselves individually when learning to cope and parent a child with unique needs. Besides, we all know parenting a typical child is hard. Parenting a child with unique needs is even tougher. Here is why I believe that.
1. When you become a parent of a child who is either medically fragile and or has special needs you automatically are in a new world. What you knew and thought you're life was going to be is usually changed drastically. For us, we were new parents effected by prematurity. Our twins came 15 week's early, because of that both twins have developmental delays, lung disease and invisable special needs. They spent six months in the neonatal intensive care unit and it was not only the happiest time of both of our lives but also the scariest time. Alot of special need parents get thrown into this new way of life. They have no clue how to react to it. They just have to go with their gut instincts just like any typical parent,but most of the time it comes with a whole load more. For example, scheduling therapies, specialist appointments, I.E.P meetings, to just name a few. Parents take on the role of therapist, advocate, secretary and doctor all in a day's work. Parents may not know how to cope with this new way of life. Which can cause conflicts in many ways.
2.Parenting styles
Raising a child with unique needs may mean that the typical parenting styles that so many of us are educated on may not work for that specific child. Frustrating the divide within the family.
3. Extended family/friends
When you become parents of special needs or medically fragile children the friends and even family you confide in the most may not understand your struggles. You possibly may even lose a few mommy friends along the way, because they may not understand that the play date you so want to attend is not doable for you're child. For instance, you're child may have a specific on the dot schedule to keep. Alot of families feel isolated, because of that. Not to mention close family members trying to give unnecessary advice that may put a divide between you and your other half, because you feel the need to please everyone. This brings me to the two most important things I feel that go hand in hand when it comes to turmoil in a relationship when parenting children with unique needs and that is communication and stress.
4. When you are parenting a child and or children with unique needs the stress load is definitely there . You are trying to meet all those needs to keep your relationship healthy,but also are trying to hold the weight of the world on your shoulders. Life keeps moving and you have to keep going for your kids. You want to give them the best quality of life possible. You can OBVIOUSLY forget about keeping your relationship healthy.Parents have to face the outside world. You still have to pay bills and many parents struggle FINANCIALLY when raisng unique children. Financial obligations can cause a lot of frustrations between a couple. Communication can be crossed without realizing. A partner may not know how to effectively communicate to their significant other when it comes to their son or daughters diagnosis or how to cope with the news.
For my family all the things mentioned above we have experienced. Our twins who are now 4.5 have come along way but, as new parents we were lost in this whole new way of life. It took us a long time to accept the things we can not change. We accepted that our twins are not typical boys.As parents we eventually knew how to find the right coping methods, skills and supports.We had to admit we needed the help and admitting we needed the guidance was okay. We weren't bad parents, because we couldn't parent our children the way society wanted. In fact, typical parenting doesn't work for our family. It took us to fall apart as a couple to accept that we will be okay unfortuntly. To aknowledge and communicate in a way that our stress doesn't come with anger. We learned that people will not always understand our life choices and ignorance will always be knocking on our door. We have always had love for each other, but it got lost scrambled up with wanting the best for our children.Through all their medical needs we forgot what was really important. Finding self care and learning to work as a team helped us through all the low times as well as good therapy time to time. When though this life may feel lonely at times the only two people that know our struggles the best is us. We are learning to cope and we still learn new ways to cope. Do I wish I knew all this 4.5 years ago? Yes , maybe our outcomes would of been smoother. Maybe as parents we wouldn't have been emotionially hard on ourselves and each other. Just maybe, we would of accepted back then that just being okay is perfectly okay!
love you guys!!!!!!
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