Helpful Tips

While I am be no means a professional in the health field, I wanted to offer up some advice for parents in the same or similar situations as we are.

My biggest piece of advice is find a support group. Most of us think we are too good for something like this or our pride gets in the way. Let me tell you, finding people in your area that know what you are going through and understand what you are feeling is the biggest help in the world. I didn’t find something until Tyler was 18 months old. Family, friends, and even my own doctor told me I should find something in my area or even go speak to a psychologist about everything. And I kept brushing them off. My pride was too strong. What did they know anyway! Well Tyler was accepted into an infant/toddler group at Perkins School for the Blind, where the kids “played” with one another while the Mom’s, and sometimes Dad’s would go upstairs and talk. We would share stories about what was going on with each other, with the kids, with our families. You name it, any topic was game. And what a breath of fresh air this was. These people actually got it. I didn’t have to pretend when I was there. I didn’t need to hide some of the story because theirs were the same if not worse than mine. Thankfully all the families became very close and after we “graduated” from there, as the kids all started public school when they turned 3, we have remained in touch. When I am feeling down or just need to vent, I know I can call on anyone of them. 

Of course Perkins is in the Massachusetts area. If your son/daughter doesn’t have a visual impairment or you don’t live in this area, speak with your Early Intervention Coordinator. He or she should know of support groups in your local areas. It really isn’t as bad as it seems. And you will feel so much better that you aren’t alone. More and more babies are being born every day with some issue or another unfortunately. So there are many people that are out there that know understand just what you are going through. They have cried the same tears you have. They have yelled as many times as you have. They have asked “why us” over and over like you have. Please reach out to them. It not only will help you, but it will help your child.

Another bit of advice I can offer up is read up on your state’s laws and regulations. Once your child enters school, your are their best advocate. In this day and age of saving money and cutting costs, schools are holding tight budgets. However, your child has every right to receive the services he or she needs. Being forceful and blunt is not part of my nature. It never has. But I am learning that in order to help Tyler, I have to be. It’s a hard change for me but I know its what is best for him. And you will need to be as well, if you aren’t already. 

As the old saying goes, “Mother knows best.” So if you feel in your heart of hearts that something is wrong, that something doesn’t feel right, or your child isn’t receiving a service or therapy they deserve, speak up. Again, you are your child’s best advocate. I still blame myself for not trying harder to make his physical therapist fit him for AFO’s (braces to hold his ankles in place to support him for walking). I would ask every couple months if she thought he needed them and kept being told no. I didn’t think this was right but I trusted the professional. When he started school, the first thing the PT did was measure him for these and send us to an orthopedic doctor. He asked us why he didn’t have them 2 years earlier. I wanted to cry, throw up, yell, scream all at the same time. If I had, would he have walked earlier? Probably. But that is in the past and it was a lesson learned. If you don’t like the answer you get, go for a second opinion. It doesn’t hurt. 

While these may seem like common sense bits of advice, they are probably the 3 biggest bits I can give. I kept hearing these over and over again and put them in the back of my mind. But you shouldn’t do that. Take one look at your little one and just tell yourself you can’t change what happened to him or her but you can make a difference for their future. Take these as you will. I just wanted to share what I thought were important lessons to me.