Why do I feel so alone?

Why do I sometimes feel so alone?  I hear those words far too often from parents with special needs children.  Especially when a spouse is in denial of a child's disabilities.  "He is fine, he is just quirky".  Far to many family members and friends say this to a special needs parent.  They don't understand that we know our child and see that something is off, something far more then just "quirky".   

Those of us who have a great support system are very lucky.  Sadly there are far to many of us who are alone in this journey.  We are afraid to take our child to a playground because they may have a meltdown or even worse...get made fun of for not acting "normal".  It breaks my heart when I see how some children are towards my child.  Sometimes I thank god that she doesn't understand how cruel that they are being.  Personally I shy away from playgrounds during busy times.  It is very overstimulating for many special needs children and very disheartening to the parents.

So, how do we get our family members to understand how we feel?  How do we get them to realize that our child is struggling and needs extra help?  Well, truth is...I don't know.  Some of us have it easy and have family members  that  are overly helpful. But those of us who are alone in this journey (or at least feel that way) need an outlet, a way to know that we are not going crazy and creating issues that aren't there.  Sometimes you have to miss family events because you know that you will pay for it in the end if your child is off routine. It is not worth the wrath of your child!  It is easier to deal with the comments from your family and friends then to deal with days of trying to get your child back on schedule.  Find support groups.  They are your best bet.  Don't stay locked in your home wondering if anyone else is in the same position as you are because most probably there are many people feeling exactly like you.  

Help is not going to come to you, you need to go look for it. Sometimes there's lots of paperwork that we have to fill out. It seems like a never ending process. In the long run at paperwork is going to be our salvation. The services that are available to our children are amazing...you just need to search for them.  They are out there!  Respite, camps, services, activities and so much more.  There are organizations out there that will pay for your child to have singing lessons, swim lessons, karate lessons, respite in or out of your home....you have no idea what is available to our kids here on Long Island but you need to do your homework and don't be intimidated by the work that revolves around it.  There are people who are willing to help you!  Just ask.

Until Next TIme...

Jenn