So far I've talked about how most of this affects the person with complex needs, or how they behave and cope with daily life; now in this post I'm going to cover something that most people forget about - the mothers, fathers and siblings of these people.
First off, and I know I can only speak of my family and others I have talked to personally, we all love that person or people who have complex needs. Without those needs, that person would not be who they are. Secondly, the following feelings, reactions and thoughts, are as varied and personal as the people involved - in other words not every parent or sibling feels this way towards complex needs kiddos.
Caring and loving a complex needs kiddo is a full time, 24/7, full on job! Most of us don't get a break or any help and it's draining - physically, emotionally and mentally. Every day, he'll sometimes every minute, can be a fight, a melt down, a step backwards; yet we wouldn't change it for anything (most of the time!)
Remember, for anyone who looks after a complex needs kiddo who has no control over emotions, their body, over their reactions to stimuli, our own needs and wants kind of get put aside so that our kiddo can get the calm, stable and loving environment they so desperately need. Who else is going to provide that, but us?
Does this mean we break? Does this mean we get ill so much? Yes yes yes! It's not that we don't look after ourselves, per se, but it's more that we just don't have the time to make sure our clothes are on right or that our house is cleaned all the time. We don't have the luxury of crying and throwing our own version of a tantrum over how unfair it all is.
For 7 years, me and hubby have fought every battle, taken every tiny step forward and fallen every step backwards with R. Our health isn't high on the priority list until we physically can't move - for example I have Fibromyalgia, ME (CFS) and depression, hubby has IBS and joint problems. These are not because of R, they are the products of shouldering the stresses and strains of learning how to help him continually move forward with his education, his milestones and his life.
How does this impact family life? In a huge huge way. Each day we both have to take deep breaths, telling ourselves that today is a new day. This is also what we tell both R and H, every day is new and the problems of yesterday don't impact what today can be. As adults, this is an extremely difficult thing to do, I can not truly explains the amount of nights we have spent in tears and heartache. When we don't know if we are making the right decision, or if we did the right thing letting R eat item 1 instead of pushing him to eat item 2.
What about siblings? What impact does it all have one them? Honestly, I don't know - H hasn't known any different, what with being the baby of the family. He's a happy, smiley active little boy who looks at his big brother with hero worship in his eyes. Everything R eats or does, garunteed H will copy him - it can prove for some very interesting and stress filled moments I can tell you!
Having said all of that though, I am left wondering, is there some deep strain on H? Has he been forced to become more grown up because of it all? I seriously hope not, but we may never know until he's older (if at all). For now though, H loves and idolises his big brother and I will not stand in the way of that, or let anyone else do that either (mama bear will come out!)
For now, me and hubby will continue to fight, struggle yet love R and H no matter what may come our way. Is that more nights of crying tears of defeat? Is that continuing to hit brick walls with doctors? I don't know but you can bet everything you have, I will fight with everything in me and within my grasp for those two boys! I will never give up on R achieving his dreams - Oylimpic Ski Jumper, ambulance driving nurse doctor - and I will never give up on trying to give R and H as much of a typical childhood as is in our power!
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