10 Things I wish I'd known about ADHD

My oldest son, Samuel, was diagnosed with ADHD when he was in kindergarten. I had known a few people who had ADHD or ADD when I was younger. I had even met a few parents whose kids were diagnosed. I admit, I was one of those people who would hear "my child has ADHD" and roll my eyes or just skim right past it, as if it were an insignificant, minor detail that had no real impact. I had no real concept of what exactly ADHD or ADD was or what it looked like; I didn't have the first clue about this disorder.

Although I didn't know anything about the disorder the minute Sam started preschool at a local head start program just before his 4th birthday (he's a September baby) we knew something wasn't right. Before this he had always stayed with his grandmother while I was at work and we all just thought he was energetic, a typical rambunctious boy. I can't tell you how many times I tried to explain away his behavior or was told "boys will be boys". Every older person in my life had advice on how to control his "wild" behavior. Nothing worked, but I continued to ignore it and tell myself he would out grow it. Then he started preschool and it became more obvious that something wasn't exactly right.

Still, for whatever reason, I ignored the facts staring me right in the eyes. I didn't want something to be "wrong" with my child. I didn't want to believe that he was anything but "perfect" and "normal". It would be 2 more years before we actually got a diagnosis. During those two years I heard every mean and judgmental comment you can think of, and then some. Other moms, teachers, the school counselor, even the school secretary, all had opinions about my son. I was told he was spoiled, I didn't spank him enough, I needed to discipline him more, I was babying him too much; every thing you could think of, it was said to me or behind my back.

I thought once we had a diagnosis and knew what to do the whispers would go away. I foolishly believed that if we were given a name for whatever was not right that those mean people would have to swallow their words and apologize to me. Boy, was I wrong! No one has ever apologized for the comments they have made, to my face or behind my back. That used to bother me. Now, I'm okay with that; it doesn't keep me up at night. Changing people's opinions about ADHD and ADD is NOT my job. Taking care of my little boy and making sure he has the best life and best education possible is my job.

Over the last 5 years since our diagnosis I have learned a LOT about this disorder. I feel like I've been through a war zone, or the worst crash course possible, sometimes. Pretty much everything I have learned about it, I have learned on my own. I have had to learn through my own research, trial and error, and falling flat on our faces at times. I know there are other parents out there who have gotten this diagnosis and feel like they are lost in a sea of uncertainty and being pulled under by everything that's being thrown their way. If that is you, I want you to know you are NOT alone.

Here are 10 things I wish I'd known about ADHD from the start:

1. It's not your fault! There is NO definite cause for ADHD or ADD. Anyone who tells you that is a big, fat liar. I have done my research and although there are many, many, MANY theories about what may or may not cause ADHD and ADD there is no proof of any of them. We do not know, and may never know, what exactly (if anything) causes this disorder to develop or occur in children. Some people will try to tell you that letting them watch TV before the age of 2 will cause ADHD. Some will say if you were a smoker before or during your pregnancy that will cause your child to have the disorder. Although smoking during a pregnancy is horrible and should be completely avoided it does NOT cause your kid to have ADHD later. NOTHING you did caused this. Let me say that again for the folks in the back. NOTHING YOU DID OR DIDN'T DO AS A PARENT CAUSED YOUR CHILD TO HAVE ADHD OR ADD!
2. There is nothing 'wrong' with your child. Your baby is not wrong, or defective, or damaged. He or she is just different. Their brains are wired a little differently than ours. They are idling at about 6000 rpms while the rest of us are at 2000. It doesn't mean their is something wrong or broken about them. Saying that something is wrong or broken implies that it needs to be fixed. Your child does not need to be fixed. They just need our help and some extra supports, and even a little more time to be as successful as others. They need parents and educators who care and who will accept them as they are and help them achieve their goals.
3. The first medicine that you and your doctor try may not work. Some people choose not to use medicine at all, and that is fine if that works for you and your child and your family. Some people use therapy only, medicine only, or a combination. We try to use a combination of behavior therapy and medications. However, getting to where we are today was not an easy road. It was a narrow, difficult, bumpy, and windy road. We have tried several different medications, slow release, quick release, ones you take twice a day and ones you take once a day. Even once we found a good medicine that seemed to be effective without any negative side effects getting the dosage correct was an entirely new ordeal. Don't get discouraged. There is no magic little pill that will miraculously cure your child. Making sure your child has the correct medicine and the correct dose is an ongoing effort. What works today may not work a year from now and what doesn't work today may work a few months from now. It is so, so important to keep regular visits with your child's doctor or doctors and keep in touch with his or her teachers for progress reports.
4. Trying to find the right therapist can feel like a nightmare. But trust me, it will be worth it in the end. Finding a therapist that is the perfect fit for your child and your family might take a long time. You might have to see several different ones before you find the right one. Then again, the very first one might be perfect. Either way, don't get discouraged, even if you've tried 10 different therapists and still don't feel like you've got the right fit. Finding the right one takes time. The therapy also takes time. Let it work. Have faith in the therapist and the process. It could take weeks or months of you thinking 'is this really working' before you have that one moment that feels like the Heavens have opened up and smiled down on you and you realize you're making progress. Just remember, you are the parent, you know what is best for your child. Don't be afraid to keep searching if you think you haven't found the right program yet.
5. IEPs take a ton of hard work from you and the schools. An IEP is an individualized education program. It involves an entire team of your child, you, his teachers, a director, and any one involved in providing special supports for your child at school. In some cases with ADHD your child may not qualify for an IEP but will qualify for a 504 plan. This can be a very overwhelming subject. You can do some research on your own and I highly recommend that you do. But don't be afraid to ask your school or your doctor or therapist for more information or to point you in the right direction. Education is power and the more you know the more you can help your child. Not every school is going to be helpful, although most only want what is best for your child just like you do. Sometimes you will have to fight for what your child needs and deserves. It is good to get a notebook for all of your IEP/504 information. It is also a good idea to keep detailed notes at your yearly meetings and file any paperwork you receive in your notebook. Read everything and make sure you understand before you sign it. Asking questions never hurt anyone! If there is anything you don't understand ask the school administrators, your child's doctor or therapist, or find someone who has been through it before and ask for help. It will feel a lot like homework for you, and it kind of is, but this is the most effective way to make sure your child still gets the absolute best education they can.
6. Your kid WILL make friends and be successful. I promise. There will be times that it doesn't feel true, but I assure you, they WILL make friends and they will succeed in school. I worried myself sick about this for a long time. Sam can be socially awkward at times. It's not always easy for him to make new friends. He can be shy too. I used to worry that he would be made fun of or wouldn't fit in; but he will start 4th grade next month and he just got back from his first over-night church camp. He is changing schools this year and already has made new friends at church who will be in his class. He also has already begun writing letters to the friends from his previous school. He has friends, he isn't left out, he isn't ostracized. You will have to be vigilant and relentless and will have to fight like hell at times for your kid to make those same strides and make friends. It will be hard, harder than it is for most other kids, harder than it is even for their siblings. It will be so hard sometimes that it will feel unfair. You may even feel like throwing in the towel. Don't. Don't give up the fight, moms and dads. Once you have worked your booty off and gotten your child all the medical care, therapy, and education plans they need then they can flourish. When you reach that sweet spot of all the tools coming together and their disorder being "managed" then you will have the reward of watching your child blossom into the person they were meant to be. They will make friends, real friends, and they will make the grades, and they WILL be successful. Trust that.
7. You cannot just discipline it out of them. There will be people, lots of people, who tell you that your child is bad, rude, disrespectful, spoiled, ill-mannered or any number of other harsh words. Those people will judge you and tell you that every struggle you face is your fault. You're just a bad parent and you should spank your child more. THOSE PEOPLE ARE WRONG. Do not listen to them. They obviously have not been personally touched by this disorder or watched a child they love struggle with ADHD. Honestly, I hope they never know firsthand what this is like or how their words can hurt so deeply. They have an antiquated way of thinking but it isn't your job to change that. Pat them on the head, smile, and excuse yourself from their company. Sometimes you will have to politely (and sometimes not so politely) tell these people that you do not need their unsolicited advice. Spanking, punishing, and making your child feel 'less than' because of their disorder does not do anyone any favors. You will have to work to find the right type of discipline for your child. Having ADHD should not give them a golden pass to do wrong without consequence. They will still need a set of rules and punishments like every other child; it will just have to be personalized to fit them. Our two boys have the same rules and expectations but their punishments and consequences are as different as night and day. Spanking does no good with either of them. Time out of any kind, even short ones, just about kills our youngest child, Richard. He will do just about anything not to get a timeout or have to stay inside. Samuel is different. Having privileges taken away bothers him the most. There will be a lot of trial and error here too, but just hang in there.
8. Other parents' opinions are none of your business. Everyone has an opinion. Other parents can be harsh. They can even be down right cruel. If another person gives you their opinion on your child, your parenting, or what you should or should not be doing ask yourself these questions first. Does this person love you and/or your child and have your best interest at heart? Does this person have any special education or authority on the subject? Does this person also have a child with ADHD? If the answer is 'no' to all of those, take them with a grain of salt and move on. Your real friends and other parents who are going through the same things won't have mean, hateful, or negative things to say to you. People who are educated on the subject will usually wait for you to ask for their help or opinions. If the advice or opinion isn't asked for and isn't constructive tell them to buzz off and pay them no attention. Your job is to take care of your child. Your job is NOT trying to please or accommodate people who have no direct effect on your or your child's life. But don't always discount the people who are truly trying to help either. Support groups are good and true friends that you can lean on are even better.
9. It is okay to be a little sad sometimes. There are far worse diagnoses in this world than ADHD. There are parents being told their children have weeks or months to live due to cancer. So there will be people who blow you off when you get the first diagnosis and you're raw and vulnerable and emotional about it. Although it is true some people have it far worse that does not negate the fact that you are going through something as well. Your feelings are valid. I had this picture in my head of the person Sam was going to be. I never thought about something being different about him. I never pictured him having a disorder that would make him struggle so much socially and academically. So when we were first diagnosed I had to mourn for a little while for the loss of that perfect child I had in mind. I had to mourn for all the plans and ideas I had of what his life would be like. Then I had to realize that perhaps this life, this path, could lead to something far greater than what I had in mind. It's okay to go through the mourning phase. It is okay to go back to it every now and then too. This journey will be long and hard. You will get tired, you will be overwhelmed, you will be sad, and angry, and disappointed at times. All of that is okay. But remember, grief is meant to be a temporary place, not your intended destination. Don't stay there. Cry for a moment then dry your eyes and put your armor back on; your child needs you.
10. Asking for help does not make you weak. You can't fight this battle alone. This journey is meant to be taken by an entire village. Your friends and family want to help and they want to understand. Talk to them! Don't try to take the weight of this disorder all on your shoulders alone. Let the other parent, or parents, in your child's life help. When there are things you want to know reach out to your child's doctor or therapist or school administrators; they are there to help. Find support groups and other parents who are going through the same thing. Needing a support network to lean on is not a sign of weakness. It is a sign of strength and humility. If there's anything this disorder has taught me it is humility; and that there is an entire community of people out there willing to link arms with you and help you along this bumpy road. You've already found this blog and I'll always be here to lend a helping hand, a listening ear, or a super absorbent shoulder. Hang in there parents! This journey is hard but it is worth it! 

All the love,
Mama Moore