For almost ten years, I have mentored other parents who are, like me, raising children with disabilities. I have helped parents access their resources, better understand the special education system and walked the halls of the state capitol teaching about legislative advocacy. I hope that my walking alongside others has helped them; but I have been helped too….by my mentors. 

Since my last child was born in 1999, my life has been touched by several amazing parents who have children with special health care needs....

It can take years to adjust to or overcome unexpected “life changes” or traumatic/stressful experiences. You know what I mean; things you didn’t expect would ever happen to you. Quite frankly, you cannot believe it happened at all. Denial, anxiety, grief and maybe even depression enter your life. Overcoming is not easy.

When you have a child or children with special needs, adjustment or acceptance (whatever you want to call it), is similar. Grieving a life for your child that he or she may never know is hard to give up. New dreams take time to find. I get asked often how I can be so positive and triumph over so many unexpected changes in my life. I guess I’m a pretty good actress because I haven’t always done well when faced with these types of things.... 

Thank you, Walker…

    Walker was one of my 10 year old son’s best friends.  They spent their time playing Bionicles, Transformers and running back and forth between our houses.  They enjoyed playing and “just being boys” together.  I smiled every time Walker would ring the door bell and ask if “Josh could play”.  He was just that kind of person.  You know what I’m talking about, the kind of person that makes you smile even when they’re not trying too.  They don’t have to say anything funny.  Just that sparkle in their eyes makes you smile.  I asked my son to tell me the most important thing about Walker.  He said that, “Walker made me laugh”.  It was like he was put on this earth to give joy to others, and he did.  He gave more people joy than he could ever know....

Here are a few of the disability related conferences coming up in Oklahoma and surrounding areas. This is not an exhaustive list, so please feel free to post anything you know about that I did not include.  

I encourage parents, family members, friends and others who serve within the community to learn more about disability issues.

Our time is so very precious.  We have to make decisions multiple times each day on how to spend it.  For parents, the decisions we make can affect our children for the rest of their lives.  When raising a child with special health care needs, those decisions can be even more critical.  For me, I have spent days trying to decide whether or not to try a new medication, therapy technique, parenting strategy or attend a conference.  It can be completely agonizing process, especially if finances are involved.

I wanted to send out a big heartfelt “THANK YOU” to KFOR news for using people first language when referring to children who have a developmental disability.   I almost fell out of my chair when I heard a local television station being respectful by putting children before their medical diagnosis.

Winter can be a tough season for children who have disabilities and compromised immune systems. With influenza and other illnesses on the rise, children who have disabilities are perfect targets for illness and may have a hard time with recovery.

There are many times when we feel like we have no hope. We feel like it is just too hard to move forward.  We are beaten down by the difficulties that life deals us. We feel that life has been unfair to us and to our child who has a disability. It’s one thing to struggle personally. It is even so much harder to see your child struggle and have challenges; and know there is nothing you can do to make it better.

I have decided that those of us who have children with special needs must be more flexible in life due to the complexity of our children’s “uniqueness.” Getting overwhelmed with a multitude of therapy and medical appointments, administering daily medications and explaining our children’s behavior to onlookers in Wal-Mart becomes easier as the years pass. In fact, I must say that I have become quite flippant regarding things that really used to get under my skin.

This week, my daughter noticed that a boy who had cerebral palsy could not walk. She asked me why. She and I talked about the things that this boy could do and the fact that he could not walk.

I challenge all parents to help their child to “find a way to play” this summer. So often, those of us who have a child with disabilities struggle with finding somewhere for our children to access play and physical activity over the summer months. I have done some research and found a few places that are very accepting of varying abilities throughout the metro.

Recently there has been ample information in the news regarding insurance coverage for children with autism. The measure being considered is called 'Nick’s Law.' I have been spending time reflecting about this issue, not only as a parent of a child with autism; but as a taxpayer and Oklahoma resident.

I admit it. I am a little ‘touchy’ when it comes to comments made about people who have disabilities, especially children. I have three; and love them with all I am. Imagine that children similar to your child were talked about adversely in public every week.

What if your insurance company suddenly said they no longer covered any treatments related to your child’s special health care needs, such as asthma or cerebral palsy? How would you feel? How would you budget for the costs of your child’s medical needs? This is an issue that those of us who have children with autism are now facing; and we need your support!

Call me a mother in denial…call me whatever you want. I am a mother who is hurting. My daughter (who just happens to have autism and Ehlers-Danlos Syndrome) has been horseback riding for six years. She has the ability to post, trot and gallop. She is beginning to learn the art of jumping and enjoys every minute of the sport. Her riding capability is above most of the girls her age.

As I think about the importance of parenthood, fathers come to mind.

OK…yes, I’ve done it a million times, just like everyone else. I meet someone and I come to a conclusion about who they are. I think that because a person acts a certain way around me; they must act that way all of the time. It’s who they are. Right?

Spring Break…for most parents, it’s a fun time with kids…maybe a vacation or just staying home to relax and play! For many parents who have a child with special needs, it’s stressful because it is a transition—actually, it’s two transitions.

This has just been a horrible winter for illness. When you have a child who has special health care needs, getting sick can be very scary. For our family, we have to worry about the illness acerbating other health issues, such as auto-immune disease. Last week, I had two children with the flu.

That’s the question I was asked this week by one of my extended family members who wanted to know how my kids were doing. Good question. I have often wondered why and how my kids acquired their special needs. I wonder why my son survived a very traumatic birth and other children don’t. I wonder why all three of my children have had to struggle through life when other’s children seem to go through life with ease.

I may be too sensitive about labels, but I just hate it when my family is called “special.” The way I see it…every family has “issues.” We are all different. When someone says, “Is that your child with ‘special issues?” I get offended. I believe we all have “issues.”

Having children with disabilities is hard work. Harder than I ever expected life to be. Life as I would have wished it to be was not God’s will. And you know…it’s hard to argue with Him.

I hope everyone had a wonderful Christmas. We had an uneventful holiday. It was really great! I used to be the type of person that loved “action” and surprise. Today, as a mother, I truly cherish those run of the mill, humdrum events.

With the holidays approaching, stress goes up. Kids start to have difficulty coping with changes in schedules, crowded places, parties and more rushing around than normal.

When Sarah Taylor first approached me about doing a “blog”, I had to ask, “What’s a blog?’ I know a lot about children who have special needs but do not know anything about "blogging." So, I decided to give this a shot in hopes that someone out there will benefit from the information I have to share. I have struggled with what to share first. I guess the first thing I like to tell someone who is raising a child with special needs is that they are not alone.