The truth about being a special needs parent

I think anyone that has a child with special needs knows the challenges…the stares, the judgements passed, the whispers behind your back, the constant battles with schools, teachers, IEP’s and the insurance companies.  We are all well versed in the whole constant up’s and down’s – lack of sleep, the sensory overloads, the picky eating, and the endless new obsessions.

What about what goes on behind the screen, the things we don’t dare talk about on FB because who knows who might see it and judge us.  Our relationships with other parents, our relationships with our other kids, and our relationships with our significant others.

Things are NOT peachy here in this household.  Each of us is on the Spectrum (yes that does make things rather interesting and not always in a good way), but Kiana is Classic Autism, Kevin is PDD-NOS and the rest of us are Aspies.  Each of us brings an interesting piece to this Autism puzzle in this household…even more so when you throw in SPD x3 and ADHD x3 and ODD x1.  It’s like one mystery after another, depending on what mood someone is in on what is going to set someone else off and depending on what someone says/does on how well things are going to go.  Meltdowns are not fun, sensory overload is rough and what is even worse – when 3 out of 5 of us are having issues and each of them keeps setting the other off again.  It isn’t pretty, it is what it is, my life.

What is it like with other parents, well I don’t get to know many people.  I moved from my hometown 2 1/2 years ago now and I don’t have much of a support network here.  It was really hard at first, and sometimes it still is but I have learned to cope as best I can.  But that is just the surface of things…

Things with Kevin and I were good until he lost his job then it was just way to much to handle.  I was just 4 months pregnant with Kiana at the time – 3 days before Valentines Day 2009.  Since then we have spent almost every day all day together – it wears a person down.  On top of that I am more organized, I get things he doesn’t (the whole spectrum thing) and I just end up doing most of the work load around here.  It is hard enough when you have your own health issues but then to have to cook, clean, organize, schedule and well take care of everyone.  I am resentful, sadly this is the situation my Mom feels like she is in, and it is in a big way just like that.  Unhappy, definitely – what can I do about it I don’t know – we have done counseling, we have done mediation, we have done lots of things.  I can only do so much and I get really burnt out.  Truth be told he sleeps on the couch, Kenzie and I are in the Master bedroom…we just can’t find common ground.  It’s hard with so much going on in one family to find that sometimes.

Having a kid with special needs is hard, we have 3 and our own issues.  It’s not fun, it’s not easy and I just want to get some space from it all but I know I can’t…I have to be here for my kids but it stinks when I have sacrificed so much of myself and it feels like I am not getting anywhere.  It often feels like I am failing at this journey, like there is just far more to this than I will ever get…meetings, paperwork, things to learn and know, people to talk to, therapy, medical appointments and all the fun stuff like that.  It can really wear me down and send me into a panic attack at times…but welcome to the life of a parent of 3 kids with big needs and being the one that gets to shoulder 90% of that on their own…no one said it was going to be easy…but no one said it was going to be so dang hard either…

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