Before David was born, I knew almost nothing about the world of special needs. Yes, I was vaguely aware of cerebral palsy and children who had learning disabilities, but I am sad to say because they didn't affect me, I didn't really think much about them. Also, back at that time and before, it seems that general education schools didn't have much in the way of special education so the gen ed schools didn't have a lot of more severely disabled kids. Because of this, gen ed kids were not exposed to differently-abled kids when I was growing up like they are now. So when my David was born and terms like "grade 4 brain bleed" were thrown around with worst-case scenario's being cerebral palsy or even death, Tim and I were in shock. We were so far out of our element, and who could blame us?
In a matter of 24 hours, we had gone from me being six months pregnant and us moving into a new house, to me, going into premature labor because of a placenta previa, me having an emergency c-section, both David and I almost dying and David ending up in the NICU being categorized as "beyond critical." In such a short time, we had been thrust into a world of medical terminology, monitors, tubes, doctors, and nurses quietly moving from tiny infant to tiny infant, fighting to keep each one alive.
We were now among other parents with shell-shocked looks on their faces or simple resignation that their lives would no longer be the same. We were about to get a crash course in medical terminology, medical technology, long days sitting by a NICU crib, and long nights of no sleep. We were about to learn what it was like to be on a real-life roller coaster.
Looking back, we knew nothing about this new world we had become a part of, and what I have learned every day since is that you can never know it all.... or even enough when you bring a special needs child into this world. You will never look at anything the same way again and even having had children before David, raising David was a completely different experience.
So having spent the last twenty years taking care of and raising David, making mistakes, researching, and learning, I was thinking the other day, how much I still don't know and how I wish that there had been someone there who could have coached me, guided me, and on those really bad days, told me that we would get through it, find our new normal and be just fine. It occurred to me then, that maybe I could be that person for someone else. So what follows is a letter to special needs parents, that I wish someone had written for me.
Dear Parents of that beautiful child that you just brought into this world,
I know you are scared. You have probably already heard words and terms that you don't completely understand and that quite frankly scared you to death as you are trying to process what is going on with your new little baby. Just know, that whatever happens from this point on.....it will be okay.
I also know that you are going to see your little newborn in the NICU for the first time and you have no idea what to expect. I know it is pretty frightening. All you need to think about though, is that your baby is in a very specialized unit, staffed by extremely educated and specialized doctors and nurses who are dedicated to giving your baby the best outcome possible. Don't be afraid to ask questions and to communicate your needs as a parent to them. They will listen, they will hear you and they will be the greatest gift you have right now. So as you prepare to walk in and see your baby, take a deep breath and remember you are his/her parent and they need your calm, your patience, and most of all your love to get healthy and to go home and start their life with you.
In the next few days, weeks, or maybe even months, you will become a monitor watcher and you will learn what every line, every tube, and every bell and whistle mean. You will learn to read faces and you will study the face of every doctor and nurse that walks in to tend to your baby. You will ask many questions and over time, you will learn just what questions are important to ask. And if they give you an answer like we can't tell you definitely to what degree your child will be affected by cerebral palsy (as an example), then know they are not hiding anything from you. Sometimes these things are dependent on so many factors as time progresses and they simply can't give you a definite answer.
Your days in the NICU will be filled with ups and downs with your child's health. You will have a barrage of doctors and nurses in and out, with specialties you might not even know exist. And if you aren't the praying type, chances are you may become the praying type as you look for answers that even the doctors can't give.
Your days and nights will be spent in that chair, by that crib and you will doze with one eye and one ear open, waking at even the smallest change in your child. On the bad days, you will pray for the most unusual things like peeing and pooping and on the good days, you will rejoice over the most normally mundane things like a smile or a finger grip and you will always be on high alert waiting for the other shoe to drop, until the moment when you walk out of the NICU with your baby in your arms.
Depending on how long your child is in the NICU, you will likely get dependent on the NICU. Even if you spend every waking hour by your child's side while they are there, you still feel secure knowing that if anything happens, you have a team of staff that will be there in seconds and do whatever is necessary for your child. When the time comes however to take your baby home, you will feel abject fear as you walk out of that NICU. There will be a realization that you are now, completely responsible for your special child and you will likely break down, fearing that without a medical degree, you might actually break him or her. Sound silly and ridiculous? It's not and you won't.
Once your child is home, depending on the severity of his/her needs, don't be afraid to ask for help from family, friends, and medical professionals if necessary. There are no owner manuals for this beautiful child, but believe it or not, you will fall into a routine fairly quickly and in many cases, you will know instinctively what your child needs from you.
To better help your child, your first course of business is to find your county or state's disabilities office. They can direct you to resources and help, and much of it should be covered by insurance. There are certain services that your child will be put on waiting lists for and other services that your child will likely start immediately. Certain services like physical therapy can't be started too early. These are the services that will help your child hit milestones and help them to have their best life in the coming years. Oh, and your child will not be dismissed from the hospital without being covered by at least state insurance. These special little ones will need a lot in their lifetime and this state insurance will cover a great deal of it. The disabilities office should assign you an agency and that agency should assign your child an advocate. That advocate will be the person who helps you navigate the disabilities system and make sure that as your child grows and develops that they are always receiving the best services for them and whatever adaptive equipment they need. The advocate can also help you to understand state insurance and what is and isn't covered for your child.
As your child grows, you will become more comfortable being the parent to this special child. You will also become your child's voice. No one will know your child better than you do. You will know when they are in pain, scared, sick, happy, or just having a bad day. So you are going to be your child's first line of defense out in the world. If your child has to go to the doctor or ER, make sure that your voice for your child is heard. If something in your gut says they are not listening to your or that they are doing something that is not beneficial to your child, MAKE THEM LISTEN! The same goes for daycares and schools. Your voice has to be their voice.
In the coming years, the moment you get comfortable with life and feel like you have conquered the disabilities codes and maizes, I promise you, things will change and you will have to start conquering all over again. You will learn to take notes about everything and you will keep a list of numbers that give you access to doctors, insurance, service providers, and even lawyers. You will know who the top person is at every agency you speak with and you will demand that you only speak to them. Even with that though, prepare yourself that you will end up spending literal hours on the phone and on hold.
In the course of your child's life, agency's will change, advocates will change, services will change, service providers will change, diagnoses will change, doctors will change, schools will change, teachers will change, insurance will change, and medications will change....and you will likely at one time or another fight and argue with all of them about all of it. The one thing, however, that will remain the same throughout it all, will be you. You will be the driving force behind everything your child does, every milestone they achieve and every glorious battle won.
As you sit there holding your beautiful baby and trying to imagine what the future holds, I would like to say that it will be a piece of cake, but I can't lie to you. The truth is there will be sleepless nights, worry, fear and frustration. You will spend huge amounts of time on the phone trying to seek out information like it is your job. You will fight more battles than you ever dreamed possible and if you were shy and quiet prior to having this child, that will soon be a thing of the past.
You will have little time for yourself and you will have no time for people that have no understanding of your life as it is now. You will find yourself educating others on your child's disabilities and you will introduce your child to other kids so they can understand that your child is just another kid with a really cool chair.
You will spend your days driving to doctor and therapy appointments. You will be a caretaker and nurse without the degree. You will spend your time trying to find the balance of protecting your special child and allowing him/her to have as much independence as possible. You will vett people like crazy as you will not let just anyone in your child's life, but the people that pass the test will become like family. You will also learn patience, selflessness, a special kind of joy, and a love you never knew you were capable of.
Milestones won't just be milestones, they will be causes for big celebrations and you will find miracles all around you, all the time. In fact, I promise you, that in 20 years, you will look back at all of this and wonder where the time went. You will have become someone you don't even recognize as you will have grown from being a parent to a warrior and you will be so grateful for every trial, every frustration, every milestone, and every lesson you learned along the way.
So yeah, I know you are scared, but you've got this and I know that baby, your baby, is so lucky to have you. You are going to change their life and give them so much, and bonus, they are going to change your life and give you so much too. It's going to be the wildest ride you have ever been on, but at the end of the day, you are going to be grateful for every second of it and you are going to be so in love with that person who was once so tiny and fragile, who you have helped grow into the best them they can be.
Sincerely,
A Special Parent, Just Like You
Until next time....may your hold time be short, your instructions be in English and may you find a miracle you didn't know you were looking for.
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