...Cuz We Are All in this Together!

View image | gettyimages.com

This  coming weekend I am going to finally put my Twitter account to good use.  If you have read my blog regularly you know that as much as I love to blog, LIFE so gets in my way and I don’t always tweet or post as much as I should.

But this Friday I am attending a weekend conference that I am really excited about.  It’s called the Family Café and I mentioned it last year in my blog, but I didn’t get the chance to attend. If you live in Florida it’s a weekend of workshops, meetings, and information sessions about the various services available to families and persons with disabilities. 

There will be vendors with information on everything from transition services to setting up a trust for a family member with special needs.

The conference is free to all persons with disabilities and even their immediate family. While you do have to pay for your hotel room and food, you can request that your name be included to be randomly selected to have your room paid for by the conference. I applied and guess what, I was selected! So for me, attending is just the cost of gas and food. But even if I did have to pay for my room, it would be well worth it.

I encourage all of you raising children or caring for loved ones with special needs to network as much as possible and attend at least 2-4 major conferences or workshops every year. There are always changes in treatments, medication, services, etc. and the only way to keep up is to network regularly and get to know other families or experts with knowledge of your child’s disability.

Attending a conference in Pinellas County a few years ago is how I found out my daughter qualified for free medical supplies! If I hadn’t attended I never would have known. And during that same conference I met a guardian ad-litem at lunch who was like an angel. She gave me some information that really was a big help to me. She didn’t know me, but asked what brought me to the conference. I told her a little about my little girl and she took it from there! I don’t remember her name but I will forever be grateful to her.

So, I always try to pay it forward.  Since I’ve been blessed to attend the conference for free, I think it’s only fair that I share as much of what I will learn as I can.

Take a look at the link attached. It will take you to the conference agenda and the vendors that are expected to be there. If there is a table you want me to visit to pick up information, send me an email and I will make sure I stop by and pick it up for you. If there is a session you want more information on let me know and if I can, I'll try to stop by to at least pick up handouts.

I will tweet regularly as I learn things that I think might be helpful to some. And when I return I will give a full report and share the information I bring back with me. I know that sometimes raising a child with special needs can leave you feeling helpless. But no matter how out of control it can sometimes make you feel, remember knowledge is power – the more you know, the more you can at least prepare yourself. And while the best plans can sometimes hit a snag, I figure having the information is always half the battle. Besides if you don't come away with anything else after reading this, know that you're not in it alone. I've got your back! Wish me luck and stay tuned for more info!

http://www.familycafe.net/images/stories/pdffiles/FamCafe2015WEB.pdf

Trust Your Gut!

View image | gettyimages.com

So I've been working with a mama who adopted a child born addicted to cocaine. He's now in elementary school and beginning to show some effects from his exposure to the drug. While he has been diagnosed with ADHD there is clearly more going on with him. His mother has taken him to a psychologist where she's been told that if she played with him more and spent more time with him it might improve his behavior. This statement was made after they asked him, a seven-year-old mind you, if his mom played with him and he responded, "mommy doesn't like to play."

Mom began to immediately feel guilty and try to explain that it isn't that she doesn't want to play with him but she's a single parent working full time. By the time she picks him up from aftercare and struggles for more than an hour  to help him understand his homework, then take a bath, eat, it's time for him to go to bed.

She says she often leaves his appointments feeling guilty and wondering what she needs to do better. Seriously?! I told her that she had every right to change her child's psychologist and or therapist- that she did have the right to get a second opinion and request additional tests to see what other ways he has been impacted by the drug. It was as if I had just opened up the windows of heaven! She never thought about getting a second opinion. She figured they were the experts and that if this is what they were telling her, it was what she needed to abide by.

Now, my suggestion to her is not to say that you should seek doctors that will automatically tell you what you may want to hear, but, it was to let her know that as a parent she should trust her gut. If this journey has taught me anything it's that mental health can often be very subjective. It isn't like looking at a scan of a clogged artery or reading blood levels that definitely say a person has high cholesterol - that stuff is pretty cut and dry. 

You can see several mental health experts and come away with more than one opinion. But you should almost never leave feeling guilty about making the best choices you can for your child. Do your own research, learn as much as you can about what ever diagnoses, issues, or challenges your child will face. And never let anyone make you feel guilty about seeking a second opinion or about realizing that the advice you are getting doesn't feel right for your child and your situation. The specialists that you see should feel like an ally.  It should feel like a team effort.  If you don't leave the appointment  feeling supported, it may be time to move on.

I'm no expert but I'm thinking that perhaps a better approach would have been for her child's therapist to give her some suggestions on how to make homework time easier or one how to make doing the homework fun so that they are playing and working at the same time. As parents of special needs children  we truly embody the phrase "on the job training." And yes we need the experts who have gone to school to learn about various disorders and diagnoses, but we need them for support not condemnation.

And so I've learned to trust my gut! If I feel I need a second opinion I get it. If I feel I'm not getting the support I need, I find somewhere else to go. It takes a lot of work but at the end of the day I know that it's what's best for me and ultimately for my child. I hope the mom I am working with takes my advice and tries to find another expert to consult with. In some cases seeking a second opinion may let you know that your first expert was right, or it may validate that you needed a different approach all along. I may not be an expert in all disorders but I sure am an expert in my child just as this mother is an expert on her son. Nobody knows your child the way that you do, no matter what anyone says, never doubt that.