Parent’s Cheat Sheet for the Newly Diagnosed

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My son will be seven in a couple weeks and I can’t decide if I have a harder time accepting how fast he has grown or realizing how long he has struggled. My son was diagnosed with an incurable disease as an infant and it was a very scary time for us. I thought I would write myself a cheat-sheet as the mother of a newly diagnosed child:

* You don’t have to have all the answers right now.
I know it feels like you should but deal only with the issues right in front of you. Ask the questions but don’t overwhelm yourself. There will be time to become an expert, but it won’t happen in one day.

* Take what you learn while researching lightly.
No child is the same. There are worst case scenarios for every illness, but don’t assume the worst until you must. Again, deal with the here and now.

* Do not be afraid to make a phone call to your child’s physician.
I once was hesitant to call my son’s neurologist but I got over it. Don’t hesitate to pick up the phone, even if it’s to ask additional questions. Medical staff really are there to help.

* Buy a notebook.
The first year of post-diagnosis is a blur. It will be hard to remember everything. Write down what you feel is important. It will come in handy during doctor’s appointments. Also, write down all your questions before those appointments. Until you get the hang of your new normal, life will be chaotic.

* Speaking of papers, you may want to organize a place for paperwork.
Life in a few years will be full of paperwork. These documents can be a lifeline of valuable information. DON’T LOSE THEM!

*Get in contact with your local county funded board of disabilities.
Head Start and the local health department are also good places to contact. There are many people and programs designed to help children facing life altering illnesses. You may also want to speak with a social worker at the hospital.

* Love your child.
I know this may sound silly to say but sometimes the addition of a diagnosis can make you feel distant from your child. He or she is the same child they were before you learned of this reality. A child can feel a difference even if they are not able to verbalize it. Affection speaks it’s own language and it’s understood by all.

*Feeling distant from your child is normal and you are not a bad parent.
There will be days where you will feel like you can no longer relate to your child and you may wonder if you still love him/her. I assure you, you still love your child and you will experience a love deeper than you have ever imagined.

* Life doesn’t end here.
Right now, it feels like the life you knew is over. Yes, you will morn. This too is normal. The loss of a healthy child is real and you need to take your time to work through the grieving process.

*Life is now about taking one day at a time.
This was the hardest reality for me to face. I could no longer dream of tomorrow because every day with disability and disease is about getting through today.

* Do not limit your child.
Some may disagree but you child has great potential. Even if your child is severely disabled, he or she can teach you great things.

* The sooner you let go of the guilt, the better.
Guilt does not change reality. Replace guilt with determination. Every time you feel like you are not doing enough, resolve to try harder.

* You don’t have to be strong for anyone, except your child.
There will be times when your child will look at you with fear in his or her eyes. At those moments, you must be ready to say, “I’m here and everything will be alright.”

* You are this child’s hero and you will be their champion.
You are stronger than you know and you will do great things, even when you feel like you are failing. You will be a soft place to fall, a source of strength, and a light for your child in dark times. You may feel at your weakest now, but your courage is about to be unleashed.

* Speak up and speak out!
You have this child for a reason, find it and fulfill it! Use your voice and don’t feel bad about it.

* This just may revive your hope in others.
You will experience compassion and understanding from many people. You will have a rare and special opportunity to see how much love is in this world.

* Don’t be afraid to reach out.
There are resources and people waiting to help. You are not weak by asking for help. You now have a very heavy responsibility.

* It’s never too late for a new start.
There have been days I would rather forget. Some days are extremely difficult but there is always a chance to try again. Regardless of what happens in a day, you can always step back, take a breath, and work for the better.

* You won’t always feel this bad.
I know it may be hard to believe right now but it will get better.

* Blow bubbles, sing silly songs, and laugh with your child.
Smiling won’t be a cure but it will help heal your heart!

There will inevitably be days when you will feel like life is unfair and you are powerless to change it. Remember, you are not alone. There are many parents experiencing the same thing. Most of these parents will tell you how they have been transformed for the better because of the journey in which you are now about to embark. You will see life more clearly and love more selflessly. You will see life through the eyes of a special needs child, and it is life changing.

*d*

More Children After the Disabled Child: Is It a Good Choice?

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When my husband and I found out that we were expecting our third child, we were very excited. One of the joys of expecting a child is sharing the news with friends and family. Unfortunately, instead of hugs and congratulations, we received critism and half-hearted blessings. It was disheartening. By the time I shared the news with my co-workers, I was in tears. This baby was making his or her way into the world and we felt very alone in our joy. The scarce number of people who were sincerely happy for us was not enough to extinguish the guilt and sorrow we were beginning to feel. It was not what I wanted or expected when announcing a pregnancy. My husband and I may have took the hard road to find each other but we had a strong marriage, probably because of it.  We had problems concieving our first child but were eventually blessed with two boys. We also worked hard to care for our family. The doubt about our third pregnancy was surrounding our disabled son. We were met with questions and disappointment as if we never considered what it meant to bring another child into the world while navigating the issues related to raising our disabled son. We were treated like the pregnancy was completely unplanned and the decision to expand our family was rash. I will never forget how the reaction put a dark cloud over my excitement.

Our disabled son was two when we conceived our third child. I was told by my doctor that we should consider having another child if it was something we may want to do in the future. I had health issues that could possibly halt a chance to get pregnant again. When faced with this information, we considered all of our options. Yes, raising a disabled child had it’s difficulties but we had decided that we wanted him to be a big brother, even before his diagnosis. We also weighed the risks and benefits to having an infant in the home. We knew we had to be careful allowing him around a baby because he didn’t fully understand how to be gentle and boundaries were something he was struggling to understand. We knew his health issues took our time and resources. We also knew the mutual benefit of having another child in our home would be for our disabled son and another child. I realized with some sorrow that a new child would most likely surpass his cognitive abilities but with that would be a chance for him to have a playmate close to his cognitive level. After discussing and weighing these risks, benefits, and more, we carefully made our decisions based on what we desired for our family. Neither of us wanted to let his disease also take away the joy of expanding our family. It had already taken so much. We didn’t want him to grow up knowing he was the reason we never had more children. How did we know he would not enjoy the company of another sibling? We didn’t. We decided  another little person would join our sometimes crazy, chaotic family and we trusted in something bigger than ourselves to help us if it became difficult. We had to ignore the nay-sayers and be happy about the decision we had made because it was best for us. I wish we would have felt supported in our decision. Instead, we were explaining why we came to this conclusion to people who really had no true understanding of our family. We felt like we were two teenagers trying to explain our unexpected pregnancy instead of a married couple announcing a joyful pregnancy. In hindsight, no one would have got the lengthy explanation we were giving, we would have asked for the respect and support we needed. We would have to let time prove we were strong enough for the challenge.

It’s three years later and we have no doubt that we made the best decison. We were also surprised with a fourth child. We had decided to stop at three and elected to have  surgery to help with my health issues. It was a week before my scheduled surgery date when our youngest daughter snuck in under the radar. We were met with the same skepticism by the same people. Yet another announcement was shrouded in gloom due to the lack of understanding. Most people waited for our reaction because they knew another baby would take more time and resources. My husband and I were once again elated to have the opportunity to bring another life into the world.  I think some people would rather try to be a voice of reason than that of support and it’s sad. Sometimes it’s needed but not in a situation such as this. No good was going to come from criticism. No matter what, the baby would arrive in several months. Sharing doubt and disappointment would only make the critics feel better about themselves. It didn’t do anything but snuff the joy out of our announcement. I would hate for anyone else to feel the way we did.

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I wrote this post because the question of having more children after a disabled child comes up in support pages often. I wanted to offer my advice and share our experience. My husband and I knew we had a strong marriage and we supported one another. We knew if no one else supported us, we were okay with our choices. We did what was right for us. We knew our son’s weaknesses and we knew bringing another child into our family was within our capability and within his capability to learn how to interact with another sibling. Our oldest daughter is now his best friend, she tells us often. She sets up his play bowling set in the hallway over and over because she knows he can’t do it himself. Sometimes he yells at her or gets aggravated but she keeps helping. They are mutually learning something from each other. She is learning tolerance and he gets a chance to socialize. My disabled son has just as much to teach us as we have to teach him. He is teaching my typical children that friendship isn’t based on ability or disability. Friendship is time spent together and learning to love differences. They look forward to doing something they enjoy together, like playing pretend bowling. I can only hope his life with us will effect our typical children in a positive way. Maybe they will choose to play with the ignored child at school that reminds them of their brother or they will stand up for intolerance because they have already been taught to meet disability with understanding. I am sad no one else could see what my husband and I did three years ago. It is sad that I will always think of the disappointment others shared instead of joy when we found out my beautiful daughters were going to be a part of our family. I have forgiven but it isn’t easily forgotten (a subject of my next post). If we had decided to stop having children, that decision would have also been made with love. We would have appreciated the same support and understanding with either decision. Being blessed with a special needs child also means taking extra care with decisions for our future. We did consider both paths before making our decision and we respect anyone who faces the same.

If you are reading this and are on the outside watching a family with a disabled child decide whether or not to welcome a new family member, be supportive. Offer an opinion only if you know the situation is dire or if the family asks your opinion. If you are a family member or friend of a strong family who decides having a baby is a good choice for them, don’t be the gray cloud lingering over the parent’s joy. Chances are, that disabled boy or girl will be a pretty awesome big brother or sister and those babies you aren’t sure about will grow up to be tolerant and loving children because of those special circumstances. There is a lot of love in a big family, especially in a big, special needs family. If you have been told that having another child is not the best choice for a special needs family, offer the same amount of support and understanding. Be a comfort if needed. Sometimes deciding to stop having children is a difficult choice and if circumstances were different, the family would love to grow their family. These parents have plenty of variables that weighed in on a their choice. It may not be the choice they envisioned but it is the best choice for them and their special needs child.

In the end, there is no cookie cutter decision that suits every family. There will always be strong opinions on the subject but families have to decide what is best for them. Bringing a child into the world after a special needs child can have good and bad points but it is a choice parents need to consider carefully. Chances are, if another child is announced in joy or a decision has been made to stop having children, they have thought about all the possibilities and it’s best to share in the joy and/or offer your support and leave the criticism for another subject.

*d*

Reply by ~L~

I know I am guilty of the knee-jerk negative reaction and I know that you know that I apologized because after I thought about it,  knew I’d hurt your feelings with my thoughtlessness. Not all people are willing to see something from someone else’s perspective but I always try to make sure I at least give it a shot. I didn’t immediately realize that I wasn’t considering it from your angle.

And you couldn’t be more right about the benefits and I know you would never need a lecture about the hardships of adding another child to a special needs family. If everyone had a disabled sibling to grow up with, the world would probably be an exponentially better place instead of the judgmental, intolerant place it can often be.

Your kids are loved immensely, taught well, and being brought up in such a way that they will be good human beings. To me, that’s what really matters.