Living a RAD life

Do you know what it’s like to jump every time the phone rings; always in constant fear of what happens next? 

Or to jump when you hear sirens and pray this time they aren’t coming to your home? 

Have you ever feared falling asleep in your own home; feared your child could be the cause of your early demise? 

Do you have locks on your doors, windows, cabinets, medications, sharps, and literally anything else you value in your home? 

How about cameras all around your home to both supervise and protect from life ruining allegations? 

Have you had to repair dozens of windows, doors, walls, furniture and appliances? 

Do the local cops and investigators, judges, probation officers and attorneys know your children by name? 

Do you commonly get called terrible names, cursed at, berated, hit, spit at, verbally and/or physically attacked?

These things sound insane right? 

Not to me. Not to most parents of children with attachment disorders such as Reactive Attachment Disorder (RAD).

Help and Support for Parents of children with special needs inc. Behavioral Closed group • 1 member Join Group This group is for parents who struggle with handling the intense behaviors their special needs children display.

For those of us living with children who have RAD, or any trauma related disorder, this is everyday life for us. RAD is a disorder that affects not only the child living with it but any other person who is in that child’s life. It is specifically difficult for the parents and siblings who just want so badly to love them. You can read more about RAD Here. There is no telling how many children actually suffer with RAD. This is due to the fact that many people either do not look for treatment or when they do, they typically do not find treatment providers who are knowledgeable about RAD or any trauma related disorders and write it off as a behavioral issue or even worse a “bad” child.

Let us take a bunny trail for a minute…

In our world, there is no such thing as a “bad child”. I know some of you are shaking your head at me right now thinking that I am going to excuse away bad behavior; but hear me out.  When a child cannot find an answer to a math question, or locate a state on a map, or even tie their shoes and the child begins to cry or tantrum what do you do? I would bet you would teach that child how to get the answers to each of these problems and let them know it is ok to not always get the answer right as long as they try their best.

Now if that same child cannot find the answer to a difficult feeling or emotion. Or figure out how to react in a difficult situation and begins to cry or tantrum. Then I would wager that same child would get punished. The child would still not be able to solve the problem he/she was having and now the child would be angry on top of it all because he/she was in trouble.

Let us take it to a higher level. Imagine you are at work. Your boss tells you to complete a task. You proudly complete the task and turn it in, knowing you have worked hard on it. Your boss then gets angry; she tells you it is all wrong, you should go to your desk and think about what you have done. You try to ask what you did wrong. Your boss gets even angrier and says “how dare you talk back to me!” You are incredibly confused now and slink out of the office to your desk and try to figure out what you did wrong.

Can you imagine how incredibly frustrating that is??? As an adult you likely have the social skills and verbal abilities to talk to your boss and figure out what you did wrong. A child does not have those skills.

Ok back on track…

Now keeping in mind the above, add a life of insecurity and fear to the typical childhood concerns. In the case of my twins, you can also add in the multiple disabilities they have to that. When a neuro-typical child has RAD it manifests in similar ways but with my children, their brains do not function in a typical way. The above list of items is daily life for us. The things my children say to me on the daily are not because they are “bad” children; their brains have just been altered in a way that most people cannot understand. Trauma can break down a child’s brain in ways that will change them for life. It can make it nearly impossible to live a “normal” life.

So take a minute to think of a child in your life. It can be any child at all. Now think about a time when that child was mean to you. Maybe it was a hit or kick when he/she was upset or when you told the child “no”. Maybe the child called you a mean name or acted rudely. I want you to really think about how that affected you.

It quite possibly hurt your feelings, gave you a shock or made you angry.  That child likely got a lesson about how to regulate his/her emotions at some point and will make better choices the next time. Children who lived lives of trauma will live years without that lesson on emotional self- regulation and as such will grow older without the necessary skills. Children who have bounced around in the system will also typically live with several sets of caregivers. My children each had over 20 different sets of caregivers including group home and residential mental health care settings where there was no specific set of caregivers, only a rotating staff.

Who is there to teach these kids? Who teaches them attachment? Does anyone hug them and tuck them in at night or calms them when a nightmare occurs? The terrible honest answer is in so many cases, there is no one.  I am sure that at some placements my children had been cared about, possibly even loved; but it was too little, too late and now they suffer. And we suffer, and there is no telling when the cycle of suffering will end.

So What Can We Do?

This is the hardest question because no one really knows. Each doctor, therapist, behavior specialist and counselor has a different belief system and every journal, book,article or blog gives different advice. My advice? Don’t be afraid to try new things, practice self-care and never give up.

Don’t be afraid to try new things

This is a big one for us! Always look for what will make life easier. When a child has multiple diagnoses, or just one difficult one, things make work for a while then stop working. THIS IS NORMAL!! We have gone through what feels like a million different “tricks”, “hacks” and experiments to alter the behaviors. We have utilized several types of providers, several of each type of providers and no providers at all. I have read so many things. Talked to so many people and have altered our day to day life so many times. I cannot even try to count it all up. Parenting is hard as hell and that is with just the normal day to day issues. When you add special needs on top of it all it just keeps getting more difficult. Which leads to my next point…

Practice Self Care

I would be doing a lot better in life if I got more self-care time in, but I am working on it.Seriously as a mother of two extremely needy children I know that you are laughing at me right now, just as I do every time I read anything on self-care.You are likely thinking about your endless to-do list, appointments, school,work, balancing everything you have to do in a day. I want you to think of it this way. No one will be there to do those things if you are dead. If you have ever been on an airplane you have likely heard the speech about making sure you put your own oxygen mask on prior to helping anyone else. It is the same thing with self-care.  Self-care doesn’t have to be anything crazy.

My typical self-care is a long shower after everyone else is in bed. I use my delicious smelling sugar scrub and enjoy the solitude.Sometimes I play music or a meditation track from an app that I love. Whatever self-care looks like to you, DO IT! You have to get your oxygen to be able to help others and if you are anything like me you have a lot of people depending on you!

Never Give Up.

I do want to be very clear on what I mean here. I mean never give up on yourself, your marriage, your relationships, your family. Never give up trying, learning and working toward what you want for yourself and your family. There are situations where relinquishment of rights has become a heartbreaking reality. I do not see this as giving up, some matches are just not a good fit and no person should be unsafe for any reason.

There have been several families I have spoken to along our journey who have had to make the incredibly difficult decision to terminate their parental rights after the child has become a danger to him/herself or others in the family. I cannot even imagine the pain of going through a termination after having worked so hard to make things work. There have been so many families who have chosen to place their child in a residential care facility in hope the child can heal and learn to be safe in the world. This is not giving up, this is doing what you need to do for your family.

You are amazing. The fact you are even still reading this shows you have an incredible heart for these children and young adults who hurt so deeply and likely make you hurt deeply as well. Some days hanging out on online support groups is all that gets me through the days. You are a part of our Ohana, and that means Nobody Gets Left Behind or Forgotten.