As a veteran special needs mom there are a lot of things I know now that I wish someone told me when we were starting our journey 5 years ago. This got me to thinking and decided to come up with a list of advice for special needs parents just starting their journey from veteran special needs parents.
1.
Be your child's advocate. You are their voice. You know what is best for them, and so very often we have to fight for what is right for them. If insurance denies something you know they need, fight it. If you don't trust a diagnosis, ask for second maybe even third opinions. If you think something is wrong, you are likely right so don't take no for an answer. IEP meetings may become your worst nightmare, so go in prepared.
2.
If something feels off, trust your instinct. This comes in from many areas. A lot of our kids require nursing in homes. Sadly too many times something happens that could have been prevented, or something that we may never suspect. If something doesn't feel right about a nurse, or any other doctor, specialist or anyone who cares for your child, don't be afraid to ask for a new caregiver. You are in charge. The same goes for your child's health. There have been times where we went to a doctor or even the ER to be told everything was fine and then a day or 2 later end up hospitalized because everything wasn't fine. If you think something is off you know your child better than anyone else.
3.
The horrible days after a new diagnosis do get better. Those first few days after learning about a diagnosis, especially if it is a first, can be hard. You may feel lost, sad, overwhelmed, and you may wonder why. That is normal. Let yourself grieve, but know that there are brighter days ahead. There are people out there who know what you are going through and they will welcome you with open arms. A big help for me was to join Facebook groups, see if there are local groups through your hospital and just find people you can talk to and ask questions of. Once you get over the initial sadness you probably will have a LOT of questions. Even almost 5 years into our journey any new diagnosis we get is still hard, but you learn to cope a little better each time.
4.
Get ready for a ton of unsolicited advice from "experts." There are a ton of people out there who think they know the cures or fixes for everything. I can't even count how many times someone has told me to just change their diets or feed them something specific or something along those lines and that it will fix them. Also so many times I have had people blame problems on vaccines. Although there are kids who have been affected by vaccine injury, not all problems are caused by vaccines. People who's dads, moms, 4th cousin removed has what your child has and they think they know everything and will try to tell you what you should do.
5.
Always be prepared to cancel plans. You never know when a child is going to get sick, have a bad day, or anything. Plans will often be thrown out the window. You will learn pretty much no plans are set in stone, even when it comes to the doctors. Be prepared for even them to cancel appointments on you, sometimes last minute. It can be frustrating, but it happens. Don't get upset if you have to cancel plans with someone and don't let them make you upset over it. Things happen.
6.
Crying and showing your emotions is not a sign of weakness. Things can get tough at times and it may overwhelm you. Learning of a new diagnosis, maybe a surgery is needed, or maybe the week has been rough. It is ok to cry, let it out. Crying is a sign of strength, it takes a lot to just let it go.
7.
Find your people you fit with. Whether it be friends, doctors, therapists, nurses, or anyone find those who fit with what you want and what you expect. Don't just settle. If a caregiver isn't what you expect or want then find a new one. If they don't fit with your beliefs and it gets in the way of care, get a new caregiver. Same goes with friends. Surround yourself with people who understand and are there to support you.
8.
Don't compare your child to anyone. They are themselves and that is it. First remember that a diagnosis doesn't change your child. They are still your child no matter what. Then remember they are unique. Even kids with the same diagnosis will do things differently. Don't worry about what others do or don't do and don't compare your child to them. Just focus on your child, and don't forget to celebrate. Even the smallest of milestones can be big for some.
9.
If you find something that works, or they have a toy or something they love, buy multiples. You never know when that item will break or just be over used. it may be years down the road and then it may be hard or sometimes impossible to buy. If there is a special ball or medical device that works and there is a chance you may need it long term and its possible to get multiples go for it. So many times something stops being made, or they change things and then it isn't the same.
10.
Laugh or smile about something every day. There will be good days and bad days, but even on the hard days you need to stop and find something to laugh or smile about. It is good for you and will help get your mind off things, even if just temporarily. On the same note, don't forget to take time for yourself. You can't be 100% there for your child if you are only on 20%.
I hope this advice helps those who are just starting on your journey.
