A little piece of heaven

Nathan is definitely talking purposefully on the Dynavox. Writing this brings tears to my eyes. It’s a dream come true.

I was away for most of Nathan’s session with Ronna today, and when I came in I found him on the “Needs” page. He kept saying over and over again, I am thirsty, I want to go night night. We gave him water and he was so thirsty, he kept going to the “quickfires” button (that is on every page) and asking for more.

Then I asked him if he really really wanted to go night night. I explained that he had horse therapy but if he really wanted to go night night I would cancel his therapy. He once again said he wanted to go night night. So I decided to listen. I called and canceled his therapy.

Ronna told me that he kept going to the “Mommy” page and saying that he wants to spend more time with mommy. He kept saying that he missed mommy and loves spending time with mommy. Sure enough the last couple of days have been very busy and I haven’t been able to hang out with him that much. So I decided to cuddle with him so we could nap together.

I hadn’t even finished getting comfortable when he was already snoring. HE MEANT IT! He really wanted to go to sleep, and he told me so on his computer! I would’ve NEVER thought to put him down for a nap otherwise.

While he slept peacefully in my arms I wept. My boy is talking to me. Purposefully. He can tell me what he wants/needs. He got to that page by himself, and didn’t leave the page until we finally LISTENED.

I am so grateful. A dream come true.

The most important thing I can tell you is, please do not believe you are in Holland. You have NOT found yourself in Holland. You are in a land much richer than Italy, more spicy than Brazil, more enlightening than Tibet. You have found yourself in a place where you will become a very different person, you will be transformed, you will become your child’s student and you will learn more than you ever thought possible. Some of the lessons will be difficult, but at the end of those lessons, you will look at yourself and realize just how much you’ve benefited, how much you’ve changed.

It may take you years to come to this understanding. Some can do it quickly, others, like me, fight and fight and fight fiercely for years. But most of us find ourselves grateful to be exactly where we are. Would we change things? Most would say yes, because it would make life easier for our children, and that’s what every mom wants for their child. Yet since we cannot change reality, most of us find a way to be grateful to have our children just the way they are.

You will be told your child will not live. You will be told your child will not do this or that. You will be told your child will have a very limited life. You will be told your child’s life is not meaningful. You will be told your child will not be a meaningful member of society. To all that I say – Who are you to make those pronouncements? Do not believe them.

Believe your child. Believe in what you see with your own eyes. Believe in what you feel in your heart. Your child will teach you that he is not only a meaningful member of society, he will teach you that he is a special member of society, as he touches many hearts, teaches many lessons. Believe that your child will do what he can do, when he can do it.

This will require so much patience. As a parent, we want to KNOW. We want to know NOW what our child will do, what we can do to help them best. Unfortunately this journey is one of sublime patience. It will take much time for your child’s abilities and limitations to unfold. Nobody can give you answers. Nobody understands exactly what your child’s brain looks like, or how that brain will assimilate and handle information. Arm yourself with the patience of the ocean, and know that in time, you will know.

You will have to make very difficult decisions. You will spend much of your time in that place, that place between the rock and the hard place. You may have to choose to give your child medications with very harmful side effects, and outweigh the benefits and risks. You may have to say things to others that they don’t want to hear. Yet you will become an expert at navigating this space and you will always know that you are doing it with the right intention.

Don’t let a diagnosis limit your child. The diagnosis can become a self-fulfilling prophecy. Believe that your child can accomplish anything, and do your best to help your child reach his/her full potential. Even if it sometimes means fighting for more. Even if it sometimes means becoming a fierce advocate, a mother warrior. Because you CAN. And you HAVE to.

Don’t believe them when they tell you that your child cannot have more than one hour of physical therapy / week. Don’t believe them when they tell you your child cannot receive this or that service. Fight them for more. The system is designed to serve the squeaky wheel. Those who quietly follow the lambs will get the minimum, while the lion with the loud roar will get the most attention. Ask for MORE for your child. Find out what else there is available. Network with other parents in your area. If you have to, appeal decisions, ask to speak to managers, go above people’s heads in order to receive extra services for your child. Extra physical therapy may be the difference between a child that will learn to crawl and one that will be immobile. Extra therapy may postpone surgery by even years, if ever. Being the squeaky wheel may not be fun and can be quite stressful, but it can make a world of difference.

Not all therapies are made equal. Some alternative therapies can bring tremendous benefit to your child. It took me years to discover that traditional physical therapy is wonderful, when administered at the right frequency, intensity, and duration. It took me years and much heartache to realize that Nathan needed alternative therapies. It took me years to find Cuevas Medek Exercises and Feldenkrais. It took me years to try Hyperbaric Oxygen Therapy. Those early years are the most precious in the development of your child’s brain, and it is during those early years when you can form them the most, help them advance the most. Those are the years that you cannot waste waiting, and hoping. Those are the years where you have to be proactive, do as much as you can, and fight for your child’s development.

Use common sense when parenting your special needs child. The people you are trusting with the care of your child, the doctors, may not always act with your child’s best interest at heart. Everyone mostly acts with their own self interest at heart first and foremost. It is human nature. So something your doctor says may be motivated in “covering” his own behavior and decisions. This is a hard truth to share, but one that I learned the very very hard way. So my advice is, take everything your doctor advises into consideration. Then RESEARCH. Get a second opinion. Speak with other parents. Don’t take what they say and follow it blindly.

You have now received many honorary licenses: MD, physical therapist, developmentalist, occupational therapist, advocate, etc etc. Yes, they are all the experts in their fields. But YOU are the only expert on YOUR child. So wear your honorary licenses with pride and make sure your voice is heard. Because your voice is the most important one in this journey for your child. Only you have the genuine interest to protect and help your child, without other conflicting interests or experiences.

Your child is a person, with feelings. Your child understands more than you can even imagine. Your child perceives everything. Always assume competency. Believe that he can understand. Believe that he is processing everything, even your own feelings. Believe that he understands when you talk to him and about him. Treat him with the respect you would afford to any other human being, and let others know they need to do the same.

Use common sense! Your child needs to eat a healthy variety of foods. Would you feed your typical child milkshakes at every meal? Your special needs child needs healthy food as much as, or more, than anyone else. He needs living fruits and vegetables, proteins, fat, fiber. Even if your child does not eat orally, did you know you can give him regular foods, blenderized, through their G-tube? And did you know that by doing that an eliminating common allergens, such as dairy, your child’s health and quality of life could greatly improve?

Your child needs exercise, just like any other child does! Even if they cannot move, it is imperative to find ways to help him move and exercise his body. There are always ways! There are swim collars so your child can be in the water, special equipment that allow your children to jump in a jumper and even ride a horse. It IS possible to adapt much of life to allow your child to participate, if only you wear your creative hat!

And most importantly, you are this ship’s captain. How you care for yourself will impact EVERYONE on board. If you take poor care of yourself, this will be reflected in how you interact with your entire family. Much of your energy, especially at first, must be directed to finding and establishing a good support network. You need to be able to take some time away to just BE. You must remember that before you are a mother and wife, you are a human being with needs and desires, not a robot. You must remember to feed your soul. Take time for yourself; you’d be amazed what 10 minutes of “ME” time a day can accomplish for you. Make sure you connect and check in with your soul every day, before you find yourself an empty depleted mess. A healthy, happy, fulfilled you is the best gift that you can give your special needs child, your entire family.

I want you to know that you are not alone. And that YES, you CAN do this. I promise.

And by the way, someone pointed out that she has a look-alike!

What do you think? Is Belle movie-star celeb baby cute?