The journey with a child with special health care needs isn’t one anybody expects. There are no directions or handbooks to help you along. There are so many things I wish I had known in the beginning. You hear so many different things when you’re going through the process of getting a diagnosis for your child, and sometimes it’s hard to wrap your head around all of the new information you hear. This is a list of things I wish I had known from the beginning.
Not all doctors are going to hear and understand your concerns for your child without some advocacy from you.
Sometimes they might think you’re just a worrier, or they might not understand how serious the problem is when you are trying to explain it. Doctors are busy, and they’re not always able to really sit down and listen or see how hard things are at home. They won’t always understand you when you try to convey your concerns. If you feel like your child truly has an issue and needs some extra help, you have to be the one to advocate for them, and that is not always easy. Let your child’s doctor know ahead of time (before the visit) if you have concerns, and ask him or her for extra time to discuss these things. Working together and making time is something that can be accomplished with your child’s doctor if you ask.
Don’t believe everything you hear after you receive a diagnosis.
It is so hard to hear that your child has a disability or health condition. When my child was diagnosed with Autism, we were given so many worst-case scenarios; I felt like my child didn’t have any hope. I was told my son would not be able to talk, read, write, and maybe not even potty train. We went straight to work, finding the right people to help him learn the ways that worked best for him. I was lucky enough to find a great occupational therapist who helped me understand that anything is possible. My son will always have Autism, but he has been able to accomplish so much. He started talking at age 4 and was potty trained by age 5. He can read and write, and is so full of personality. Don’t limit your child’s potential because someone says that he or she can’t do something. Nobody truly knows what your child is capable of accomplishing.
Just because someone tells you that you have to do something doesn’t mean you have to do it exactly their way.
I spent a lot of the early years trying to do everything exactly the way I was told it had to be done. Once I got comfortable in my own skin with Autism, and found the confidence to raise my children, I discovered a lot of that stuff came naturally. Loving them, for example, comes naturally, and they are our children for a reason. We are provided with the strength to give them exactly what they need, and in return they give us what we need. Listen, read, and learn from all those who come before you, but don’t be afraid to “color outside the lines”!
I wish someone would have warned me about the waiting.
You work so hard to get your child a diagnosis, and then you wait. It seems like everything you need to get help for your child has a waiting list: therapy, specialists, respite, SSI, and even school. Everyone talked about how important it was to get help early, and in the next breath I heard, “We will put you on our waiting list.” Don’t get discouraged. Just keep advocating for your child, and things will come along.
Sometimes it takes a tremendous amount of strength just to go out in public.
I was surprised people had the ability to be so mean and ignorant. People are capable of saying and doing things that might just break your heart, or make you steaming mad. I quickly learned I needed a thick skin. I also learned that sometimes they were giving me the perfect time to educate them about my child’s disability. People may see my child and think the worst, but a lot of them leave knowing they can’t always judge people by what they see.
There will always be ups and downs.
I would get so discouraged when we would get past one issue only to have it replaced with another. You and your child will always have setbacks, but you will also have triumphs. Every time your child accomplishes something new, you will feel like you’re at the top of the world. You will also have days that it feels like everything is crashing down. You might feel like you have to be strong all the time for your child, but you’re entitled to have bad days as well. It took me a long time to realize it was all right for me to get discouraged sometimes. Later, when I felt better, it made me want to work even harder, and I would come up with great new strategies for working with my child.
You’re not alone, even if it sometimes feels like you are.
There are other families who have been or are where you are. You will have days that you feel like nobody understands; that is all right. It is so important to try and find a great support system so you have both a shoulder to cry on when things are rough, and someone to celebrate with when your child achieves a new milestone.
Reality is, we cannot know everything about everything. We learn things through experience. Each unique experience gives us knowledge and confidence to move on to the next one. Hopefully, we can use what we have learned to help someone else along the way.