Tuesday, February 25, 2014

Hey look, I'm doing something right!

A couple weeks ago I was invited to attend a local symposium for parents, caregivers, therapists or anyone directly involved with special needs children. I was invited by Morgan, an amazing Behavioral Interventionalist that works at one of the places Lucas has received therapy.

I attended last year's symposium and I could definitely tell a difference this year. There were more attendees, speakers, and vendors I had not previously heard of. I was so pleased! It really showed that more people in Mississippi are paying attention. Our state has these amazing children and they need help! It is very comforting to know that slowly the options for special needs children in this state (and many others) are going from 1-2 ways to help to several depending on the child's diagnosis.

Morgan asked me to come because after the main speakers, the symposium was having "break out" sessions where you could go into a room and listen to a speaker about a specific topic. I thought it was very helpful and well planned. Morgan's topic was having a healthy and successful marriage when you have a special needs child. B and I just had our 9 year anniversary on Valentine's Day (yes, I am that corny), so that plus my ever-moving mouth and lack of fear in speaking in front of a crowd made me the pick. I was really, very honored she asked me to come. I was thinking "Hey...if they want me there....speaking...I must be doing SOMETHING right!"  :)

Anyhoo, Morgan made some really amazing points on how to keep a marriage vital, functional, and connected when you're faced with things that come along with being a special needs parent. Things like anger, fear, guilt, more anger, more guilt, and on and on. She made amazing points that I had not even thought of!

My part was to tell some personal stories (good and bad) and offer suggestions to the group. I really hope I helped. I was so impressed that Morgan had such a fantastic understanding without having had a special needs child herself. It takes a lot of empathy and a big heart to have that and she really does.

Our session went over the allotted time (I told you I talk too much) so I told the group I would post Morgan's outline along with some of the notes I made on topics to discuss. Below is her part and I will list my stuff after it.

My marriage is definitely not perfect, but somehow we've made it. Statistics say that only 20% of couples with special needs children remain married. I hope that somewhere in all this you may find something to help you be the 20%, not the 80. I can promise you, not only will it be better for your child, but this would be a much harder road to go down alone. I'm grateful every day that I don't have to, and respect every parent that does.

-Boog's Mommy

Some Notes from Boog's Mommy Part One:

* Be the 20%, not the 80. Don't let some statistic frighten you. Everyone knows stats can be manipulated. Don't let frustration make you give up. You can do this, but it takes a whole lot of patience.

* Men and women deal with things differently. You want to talk about it and he doesn't. This is because women get obsessed and want to talk until we're blue in the face to come up with answers. Men are quieter. He is dealing with the same feelings...just differently. Since he was a boy he has been told that he will be the man of the family one day. "You take care of your family because you are the husband." He has an issue he can't fix. He can't protect his child from whatever diagnosis it is. He's battling demons and wants to do anything but talk about it. Give him time.

* Do NOT be afraid or ashamed to ask for help! That is what counselors, therapists and doctors are for. Talking to someone because you want to help your marriage is not something to be embarrassed of. You need to be proud that you're willing to try so hard to make it work. Even if you have to seek help alone, someone can help you with ideas and plans to make it easier for both of you.

* Try very hard to not feel so guilty. This is NOT YOUR FAULT. It wasn't a vaccine, or that glass of wine, or because your great uncle ran around the front yard naked. This child was meant for you and whatever diagnosis he/she has makes them who they are. You have done NOTHING to hurt them. In fact, you probably go above and beyond what most mothers do on a daily basis.

* Take some of those useless feelings of fear or guilt and channel them into something useful - being the very best advocate your child will ever have. Read books, talk to therapists, check out recipes for special foods. Staying busy helping will help you to stop hurting. Then, once you get a hang of can work on having some real "you" time and taking care of yourself.

* Reach out to other parents of special needs children. They will understand how you feel much better than any of your current friends do. You need at least one person you can email or call when you need to talk. Husband is probably worn out talking, and you will not be bothering your new friend. She will be relieved to hear someone with similar issues, trust me.

* Do not be afraid to tell family or friends that right now it bothers you to hear a tremendous amount of details about the accomplishments of their children. This is not permanent and you are not being hateful. Explain to them that right now it's a little too hard to hear about how little Suzie can say the Pledge of Allegience or that little Johnny walked 2 months before anyone thought he would. In time, these things won't bother you, but don't feel ashamed that they do now. Eventually you will explain to these folks that your child's achievements are just as exciting (if not more) and they will learn to share your excitement. At that point, when you hear about Suzie explaining the theory of relativity in Spanish to her classmates, you can tell your friend/relative about your child trying a new food with a different texture and you both can be happy and proud. This too will take time.

* I needed an outlet to get things off my chest so I started blogging. I hope people read it and it helps someone, but I know it helps me. I get out a lot of stuff instead of holding it in, and I can also look back at old blogs and see how far we've come when I'm frustrated. It's very easy to get sad when your child is still non-verbal, but you forgot that just 2 years ago you were praying he would make eye contact, acknowledge his own name, recognize you in a room crowded with people, use a fork, not cover his ears in a loud place. This blog makes me remember how hard I prayed and pleaded and begged for my son to reach out to me in ANY way. Now I get more hugs and love than most moms with four year old boys :) These things should not be forgotten! And if you don't want it public, go get a notebook. A spiral notebook from Dollar Tree can be way more valuable than you think.

* Doctors are great with telling you specifics. They know what medicines to suggest, types of foods to feed a child, types of therapies to try. For day-to-day advice your best resource is....other moms. Specifically other special needs moms. They rock. Get online and look for websites with forums or blogs concerning children with the same diagnosis as your child. Moms have the BEST ideas.

I know this is a lot, but stay tuned for part two where I actually talk more about marriage :)