Advice for Parents with Special Needs Babies

Advice for Parents with Special Needs Babies

Top Advice for special needs parents or family members:

If your child or other loved one has a new diagnosis of having special needs, if an accident or birth trauma has left a loved one with a traumatic brain injury or other disability, or if you are expecting a child and have discovered they will not be a “typical” child first let me say: I’m so sorry. I know this isn’t easy. In fact, this may be the most difficult and heart-breaking thing you’ve ever faced. But know you’re not alone! There are many, many families who have special needs family members and have faced the shock, the pain, the denial (or sometimes relief) of getting a diagnosis and have made it through. Here is some of the advice I’ve gotten from other people and some things I’ve learned along the way that has helped me keep my sanity, hold it together and move towards a better place.

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  1. Best advice I ever received: It’s going to get easier. Just hang in there and take it one day at a time. Truly, it’s going to get easier.
  2. When thinking of your child’s future, only look 6 months ahead. If your child is still an infant, you don’t need to be worrying about whether he or she will go to “normal” school or special education, or if they will graduate high school or go to college or go married or any of it. If you are thinking that long term, STOP. You’ll make yourself crazy. Thinking 6 months ahead is manageable. Thinking years ahead is not.
  3. Doctors cannot tell the future. If someone has told you your child will never walk, will never talk, will never … whatever else, thank them for their opinion and then disregard it. NO ONE knows the future, and no one will determine what your child can do except your child. Think of all the people you’ve heard of who were told they’d never walk again and they prove doctors wrong.
  4. Go easy on the research. When we first got my daughter’s diagnosis, I did my own research online and ended up curled up in a bawl sobbing and never wanting to get out of bed again after finding all kinds of scary stuff I read online. Later, when we had new information to add to the diagnosis, I asked my sister to research for me. She was able to filter out some of the horror stories and cut it down to what I could handle at the time and what I needed to know at the time. That helped a ton!
  5. Connect with other families who have a child or loved one with special needs, even if it’s not the same diagnosis. They are the only ones who will really understand and it will help to look around and know you’re not the only ones dealing with this.
  6. Go to therapist for yourself and your own mental health. If possible, find a therapist who has counseled relatives of special needs individuals before. Some early childhood intervention companies that do home therapies also employ a mental health therapist who can also come to your home if you can’t get to an appointment.
  7. Celebrate every little accomplishment! If that accomplishment is rolling over or picking up their head, smiling or laughing, walking or sitting up, breathing on their own or learning how to suck on their own – every little accomplishment is significant. It’s not fair that it’s harder for our children and loved ones to accomplish small things than for other people, but that’s how it is. When they do accomplish something, they had to work hard for and it IS a big deal!
  8. Accept that your child will do things in their own time. Don’t compare them to other children. I had to stop reading the developmental milestones charts. I try to know what milestones we should be looking for but not align them with age. My daughter will get to them when she gets to them. If she never gets to them, that’s ok too. She is who she is, and she is perfect the way she is. So is your child. He or she will do things in their own time, and they are perfect and beautiful just the way they are.
  9. Stay involved in life outside your family unit as much as possible. It can be very isolating to have a child with special needs, especially when the differences start becoming apparent. It can be very hard to face other families when their children are moving into new stages and your child is not, or when you feel like they have no clue what your reality is life, or when you feel others are judging, but try to stay connected!
  10. Allow yourself to grieve. You are grieving for the life you thought you would have, and the life you thought your child or loved one would have. You are grieving for the dreams you had for your child or loved one, which may not be possible now. You are grieving for a future-life lost. It’s ok to grieve for all of that. The stages of grief are denial, anger, bargaining, depression and acceptance. I’ll talk more about these later. You can expect to go through back and forth through these stages many times in the days and months and years to come. It's important to let yourself feel and experience these emotions. It’s the only way to heal.
  11. Eventually you will get used to the new reality. It will stop shocking you every time you think of the diagnosis. It will stop being so overwhelming. You will stop bursting into tears at random moments throughout the day. You will learn how to cope with this new reality. You will figure out what works for your loved ones and for you. The situation will hurt for a long time, maybe forever, but you will learn to deal with it and you will be stronger than ever. You will make it. Just get up every day and keep breathing. Hang in there.

Please comment below and share your experience with us, or give us a feedback about this article. If you think some tips are not included here, please let us know so that we could share them with the rest.