Support that doesn't always feel like it...

Some days, I just want to go back to bed and put my head under the covers..and most of the time, dealing with the professionals who are suppose to be helping us are involved. A new social worker should not cause one to feel like they want to give up..but it seems that my first reaction to these changes is just that...a new diagnosis for me...overwhelm induced coma syndrome...

January 1st is the beginning of a new budget year. We have two adult children who have an annual budget that helps us to care for them. Out of the funds, we pay for staff to assist them, medical supplies not covered by insurance, and other services that make it possible for them to live at home. The money doesn't come to us...it is managed by a fiscal agent. We must write a budget every year and get it approved by our County. The alternative for them would be a group home placement..and that would cost WAY more than what their in home support budgets cost. We choose the CDCS (Consumer Directed Community Supports) option which allows us to use the money flexibly so that we can purchase services that are tailored to the unique needs of our children.

There are some of you who have no services and wish that you had the problems I am going to tell you about. I get that. I wish that everyone had funding options available to care for their disabled children. I know that so many people do not have any supports and I am amazed by your resourcefulness, creativity, and commitment to caring for your child without help.

The County social services programs have changed over the years. In the beginning, there was much scepticism regarding the concept of allowing parents to decide what their children needed. Then it seems that people started to "get" it...by recognizing that parents know their children best, it only makes sense to allow them to decide what support would benefit a child. We have had WONDERFUL social workers over the years...they have fully embraced the concept of family centered care and recognized that supporting families supports kids, Our social workers, both in Anoka and Sherburne Counties, have been instrumental in the success of our kids...and they have empowered us to continue advocating even when we faced giants telling us we wouldn't win.

But, now the tide seems to be turning again...I am feeling like the bad guy...like my every advocacy move is met with criticism and scepticism. I don't think it is just our situation, but I am feeling like the climate has shifted and the "system" is beginning to be afraid of giving parents too much control.

Maybe I am judging things wrong...maybe it is because we have so much exposure on our Counties' radar. With so many children with needs...mental health needs, medical needs, developmental needs, maybe their bristle every time they hear our name. Is it just that we have so many children? so many children with needs? Is it because we fight for supports that are being taken away? Maybe the amazing social workers and professionals that we have encountered over the years have raised the bar for us. They have taught us well in the way that they encouraged us to be creative in the ways that we care for our children...our service plans are as unique as our children. That's how it should be..

And then there is "public opinion." I think I am over that by now but there are times when I am met with the judgement of others who are not raising children with special needs. We have adopted children with disabilities and sometimes that means that our County will pay for 4 hours a week of housecleaning...not because we have a lot of children, not because we deserve it, but because it helps us to keep our children who have immune deficiencies and severe allergies healthy...

There are a few times when I meet someone who reacts with anger towards the services we receive..they see PCA's as free babysitters and homemakers services as wasteful..and to them, I remind them that there are over 500 children in Minnesota alone..many with special needs who are waiting to be adopted and you too, can receive "free babysitting and housecleaning" if you adopt one of them! That usually quiets the jealousy monster in them...

So, as I come to the end of this post, I don't feel like climbing back in bed..I have reminded myself that I am thankful for the services that we do have and that I am not going to stop fighting for what my kids need...even if I am perceived as the "bad guy" by some. Thanks for letting me sort things out in this post...and get my perspective back! My kids who struggle with disabilities struggle with being overwhelmed and frustrated every day...I will remind myself that the frustration I feel is nothing compared to the struggles they face...I have so much to learn from my kids...