IF YOUR CHILD IS DIAGNOSED OR INJURED
As a parent, one of your worst fears is for something to happen to your child. Everyday, there are parents that will receive word their child has either had an accident or been diagnosed with an illness or disorder. Should it happen to you, the first thing to know is, people react differently to receiving bad news. Within the same family, it is not uncommon for people to have very different responses. One person might go into denial. (Parents can have a hard time accepting that the dreams they had for their child's future are not going to be what they had envisioned. That is a loss and it is okay to grieve for that loss.) Some people become depressed and shut down. Someone else will just face it head on, even though they are filled with sadness. In all likelihood, you will experience a gambit of emotions all at the same time. This is all normal. I would encourage readers to draw strength and comfort from those they trust. Make sure it is someone that you can be completely honest with. Share when you're sad, share when you're frustrated, share when you're exhausted, share when you're overwhelmed. These are all normal responses in this situation. Don't be afraid to ask for help. There is strength in numbers. Pray with others, ask for prayer, don't pull away or close yourself off. That will only hinder your efforts to help your child. If you are not finding the support or understanding you need, then seek out a support group of parents dealing with the same issue. If you are in a different mental place than your spouse as far as acceptance of the situation goes, don't let it drive a wedge between you. Seek out friends or family to turn to...for now. Give them time to learn to accept the circumstances, but you need to find a way to come back together and be as one. Having a special needs child or child that is sick can be incredibly tiring and stressful. Marriages, all too often, fall victim to the stress of the situation. The divorce rate is 80% percent among couples with a special needs child. Have your friends and family pray for you, seek counseling, do whatever you need to do, so that you can draw closer together during this time and not let the stress drive you apart. Your child needs both of you focused on the same goal, which should be helping your child and providing a loving home. You were chosen specifically by God to be the parent's of your child. He will enable you to handle all that entails...if you let Him. He will give you all the strength, energy, wisdom and knowledge you need to help your child, you need only ask. You may feel ill equipped at times, but God says in Phil 4:13 "I can do all things through Christ who strengthens us!" God rarely calls the qualified...He equips those He calls!
The second thing you need to know is: You know your child better than anyone. If you feel in your gut that something is wrong or that something is not right about what the doctors are saying, then keep pursuing it, go to as many doctors as you need to. It is very common to have to go to multiple doctors before getting to the true diagnosis. Persevere, don't doubt yourself if things don't seem right. It is better to err on the side of caution, especially when it is your child's welfare at stake. Don't be discouraged if you are told "you are only a parent, I am a doctor." You ARE the parent and you are your child's greatest advocate! Find a doctor that will answer questions and treat you with respect and understanding. Which leads me to my next piece of advice. Research, Research, Research! We live in an amazing time and age where we have immediate access to so much information via the internet. Learn all you can about your child's condition so that you can be the best advocate for your child that you can be. Read and listen to everything you can. With my son, I found that the greatest source of knowledge and help came from other parents who had dealt with the same thing. Those parents are also actively seeking answers. Other parents pass the word on what works and what doesn't...who's a good doctor, who isn't etc. My son would not be where he is today, if I had not sought out on-line parent groups and lists. He's eighteen now and we started on our journey when he was two and a half. I'm still researching. I'm still advocating. I'm still learning from other parents. On one occasion, my research and going with my gut instinct, literally saved his life. I can not stress enough how important this is! The old saying "knowledge is power" is the truth when it comes to helping your child. Unfortunately, I've seen many parents that didn't or couldn't take the time to help their child. It made a world of difference in how much their child progressed and how much of their potential they achieved. If you are a single parent and it is too much for you, then seek out resources that can help you, to help your child. Early intervention is crucial with so many things. At the end of the day, you want to know that you've done everything you could do to help your child to be the best they can be... whatever that is, with whatever condition or illness they have.
I also want to mention that most kids with disorders such as Autism, also tend to have other disorders with overlapping symptoms. With my son, I likened it unto layers of an onion. We'd deal with one issue and peel that layer away, only to find something else underneath. You may find it difficult to get an accurate diagnosis for this reason. It will also be a reason why you are given differing opinions and diagnosis' from doctors as to what is wrong with your child. Don't get discouraged. My thought is, if you know this is a possibility, you'll be more prepared mentally for what may come up on your journey. Another thing I'd like to mention is, you may have to drive far and wide to get to a good specialist. We drove two hours, one way, to get to my son's speech therapist. We still drive over two hours one way to get to one of his doctor's. We've been with her for seven years. We've gone to other states, when necessary, to get assessments and it always paid off in big ways. We've been with my son's Occupational Therapist for over ten years. When we have found a good doctor or therapist, we make the long drive if we have to. We also stick with them if at all possible, especially if they have developed a comfortable relationship with my son. I share this information, as it is fairly common for parents to have to seek out professionals in other, larger metropolitan areas. This is where it helps to find on-line forums and parent lists. They really spread the word on who is a good doctor and who isn't. It helps so you don't waste your time or money!
Hopefully, this site can provide a starting place if you don't know where to look for answers. If you have other resources that you can recommend, please don't hesitate to write, so we can pass it on to help others. This site is not meant to diagnose any condition or to tell people what they should or shouldn't do medically. From one parent's heart to another, I'm sharing some of the knowledge that I have found on my journey with my child. It is my prayer, that you will find some hope and encouragement from the resources on this site. It can be challenging and fatiguing at times to be the parent of a special needs child. I'm not trying to sugar coat anything. My son has come farther than what the doctors ever said he would. We both have worked so hard for him to be where he's at today. Every little thing that he accomplished we celebrated. These were usually things that most "typical" children achieve with little effort in their normal development. I found for myself, that my faith sustained me on the difficult days. Having a positive attitude helps immensely. I wake up every morning and ask the Lord to help me find the joy in each day...to focus on the good and not bad. That helped a lot on those days where he would have total melt downs! It's fatiguing and challenging. You can run into problems finding adequate support. If you have other children, you have to juggle all the more to try to meet the needs of all of your family members.
My final words of advice... Try as much as possible, to fill your life and home with peace and joy. Know that you will have good days and down days. You may be making progress and something will happen that will cause a setback. Expect it...it will happen. If you're mentally prepared it will not overtake you....then just keep pressing forward. As someone that has been down this path, I can tell you that you won't regret the time and energy you invest in your child. It will have huge rewards when they are older. You will probably have to force therapy on them at times... learn to know when you should press on and when you should stop. Expect that you will probably have differences with your spouse on how to best handle your child. As a general rule, men and women look at things differently. Try as hard as you can to not let your differences come between you. If you have resources and information to back up your position and thoughts, share it with your spouse. Make sure they understand you have a reason for thinking the way you do. Educate your family and friends about your child's condition so they can understand from the very beginning. Give them updates as you go along. It will make life so much easier in so many ways. (It will save a lot of well intentioned advice on things like "if you'd only discipline your child they wouldn't behave that way!") If your extended family does not understand and battles you, then remove yourself from the battle as much as possible. You need to put your energies into helping your child, not making others understand about them. That's another area where support groups/on-line groups are wonderful. They are a great sounding board for such things...they let you vent and share tips on how to cope. Surround yourself and your child with as many people as possible that love you and support you. Try to be as even tempered as you can. Take time for yourself. You need to re-charge your battery... for your own sake and for the sake of your family. You can not help your child if you are physically or mentally exhausted. ( I know this is easier said than done!) If you have an organization or individual that offers respite care...make use of that resource!Take one day at a time, do your best and leave the rest up to the Lord. He loves your child even more than you do and He's got you both in His hands!
(Please check the topic "Help and Resources for Parents/Special Needs Children" for a lengthy list of resources to start you on your journey!)
Colleen Swindoll-Thompson's children talk about being a sibling of a special needs child.