Things I Wish I'd Known
On this Page
- Not all doctors are going to hear and understand your concerns for your child without some advocacy from you.
- Don’t believe everything you hear after you receive a diagnosis.
- Just because someone tells you that you have to do something doesn’t mean you have to do it exactly their way.
- I wish someone would have warned me about the waiting.
- Sometimes it takes a tremendous amount of strength just to go out in public.
- There will always be ups and downs.
- You’re not alone, even if it sometimes feels like you are.
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.