How the Journey began…
How the Journey began…
My name is Donna and I am the Mother of two wonderful children that possess ADD and ADHD. In 2014 I decided to blog about my experiences in navigating teachers, doctors, therapists, camps and you name it everything that has never been published, I started writing about my journey, or should I say my children’s journey to sanity, correct teaching and learning. This is where I begin today, As I have spoken to many people they requested that I document more of the journey and maybe my adventures and knowledge can help just one child. Remember, our children deserve to be part of our society and we can find the path for their success.
2014 when I began…
Welcome to my first attempt to blog about the “Trials and Tribulations” of a Mom with two ADD/ADHD children. I thought long and hard about creating this blog. But with the encouragement of my “ADHD Coach” yes, there are coaches for Moms with children that have this disorder, and my husband, I have decided to try and give Mom’s that are struggling and looking for answers some of my experiences that have helped my children. Hopefully, just one person can take some of my experiences and have some success or at least feel like you’ve accomplished something. So, I have two children, yes, they are adopted. When I adopted them, no one ever mentioned that the possibility they would have ADD/ADHD could be very high. Actually 17 years ago, what did everyone really know about this disorder? Probably not much. Hey alot of people still don’t know much about this disability. I knew NOTHING!!! Actually when my daughter went to school she was a very precocious 5 year old that loved school. The picture that the Kindergarten Teacher gave me was not the child I had at home AT ALL. Well she was young, and could outgrow it. In 1st grade I had numerous calls from the Teacher about how my daughter could not sit still. Okay, maybe she’s bored, how do you tell that to a Teacher??? Okay, well after the conference and the picture she painted me we were off to the pediatrician. Right, this is what my Mother would have done? I thought this was the first place to go, well after a physical, she told me my daughter was fine. Okay so I told this to the teacher and that was like the wrong thing to say, but what came out of this was that she thought my daughter had signs of ADD. ADD is hyperactivity, impulsive actions and difficulty maintaining concentration. I was 45 years old, a college graduate and NEVER heard of this before. Okay, back to the pediatrician, and her saying she did not think so. Okay, how do I proceed? Remember this is 2002, there were not tried and true tests. No we perservered through 1st grade. In second grade I had to send my daughter to Sylvan Learning for 2 months to re-learn math, does that give you a clue. In 5th grade we finally diagnosed my daughter through a licensed psychologist through Yale New Haven Hospital. She was put on a drug called concerta, which she still takes to this day. But the most important thing I try to stress to parents, the part of the evaluation which was priceless was the comment the psychologist made. Although ADD is the diagnosis, as your child gets to 9-12 have them re-tested as learning disabilities are associated with this disorder. Disabilities???? This is where I will leave off for today!…. Stay tuned for my next blog on Disabilities associated with this.
March 12, 2014
Today I am going to continue on my blog about my children and their challenges with ADD and ADHD. Previously I was speaking about my daughter who was diagnosed with ADD. In middle school she was put on a drug called Concerta. They slowed her down to a point of being able to concentrate but she also has anxiety issues with the ADD. When her annual PPT came about (Parent Teacher conference to discuss her IEP(independent Educational program) it was very interesting that the school intern psychologist mentioned that she thought my daughter was very depressed. Depressed, she loved school, even though she had a challenging issue. She was even seeing a therapist, one of the recommendations from the psychologist that diagnosed her. After this meeting nothing was ever done. She did have “unusual” issues, for example, she had such difficulty working with her lock on her locker. She kept getting the turns and numbers wrong, to an extent the teachers changed her locker near one of their’s so they could help her. She had quite a bit of issues in Math, problems that required comprehension were always challenging, but again the teachers got her through it, this is what I thought they were doing. In her final year of middle school, 8th grade, different issues manifested, she began making up stories, big issues with other girls, they wouldn’t want to play with her. She was seeing the school psychologist, but she would just tell my daughter to work with it. The friendship issue became more pronounced to an extent that when someone asked her for lunch money she helped, and thought these kids were her friends, after numerous times of asking for money, she began to take money from me and not eat lunch. Now this became bribery with the kids to my daughter. The breaking point was at the end of the school year she stole $40 from my wallet, I noticed this while she was in school. I called the school and asked them to hold her at the guidance office. When we confronted her she told us that boys told her not to come to school unless she gave them money. She was so afraid she stole from us. We went to the principal of the school and he got the boys and confronted them, but because no one saw my daughter give them the money he let them go without any punishment. This was very upsetting to my husband and I. The therapist would talk to my daughter about it but she never divulged any information. Finally in 9th grade everything exploded! She was on such a stressful overload she threatened to hurt herself in the school. We were devastated. This brought us to our current Psychiatrist, who is the best thing that has happened to my daughter. He sent herto a group of neuro psychologists that gave her a battery of tests. She was on huge amounts of antidepressants, (by the way, this medication makes them gain a large amount of weight). She gained 30 pounds in 6 weeks. This was not my daughter. After the testing she was diagnosed with NonVerbal Learning Disability. I had no clue what this was, but what I did find out is that 98% of the time a learning disability accompanies ADD/ADHD. What an eye opener!!!! Now my recommendation to everyone, have your child tested between the ages of 9-12 if they have ADD/ADHD. This psychologist gave me information that was INVALUABLE!!!! She told me to hire an advocate for my child whenever I deal with the school system. She saw documents that the school had testing information that suggested an issue and they never brought it to my attention. That depression she had, THAT’S A HUGE CLUE!! What did I know I’ve never had to deal with this. So we hired an advocate to help us get the assistance my child needed. My battles had just begun!!! To be continued….
Child Advocates, I had no idea they existed. A child advocate is an essential part helping get your child all the assistance they require in the school system. I had no idea of this until my daughter had all her testing done. Knowing how difficult her journey/challenge would be going forward, this was the best recommendation the psychologist gave to me. She had many recommendations and explained to me that these people know all the laws in your state to help and give assistance to children with learning disabilities. This was the turning point in my daughter’s life and if you take any piece of advice from me in any of my “ramblings” this is it. You finally have the law on your side, you find out how educated your teachers REALLY are. You will be very surprised. I found out that two people knew what Nonverbal learning disability was. All my daughters symptoms were so typical of this learning disability. One other very important piece of information came from this evaluation, 95% of children that have ADD/ADHD have some sort of learning disability. Wow, what an eye opener especially since I also found out that a good percentage of children that are adopted have ADD/ADHD. Most of the pregnancies are impulsive, a characteristic of ADD/ADHD, and all of us who have children with this disability know this. No thinking before they react!!!! Hmmm curious! Needless to say, the advocate which I hired, which I will say, was a godsend! She was sympathetic, sincere and knew my daughters rights. What a change in the PPT meetings for my daughter. Once the school put a new program in place for my daughter we wanted someone to come in and evaluate it’s effectiveness with my daughter. Well, another eye opener, it was not tailored to her. She made fabulous revisions, so much so for the last 3 years she has been on the honor roll. She has classes teaching her socialization skills. Who knew that socialization skills are such an essential part of our lives!!!! Important Pragmatic Language: this refers to the social language skills we use in our daily interactions with others. They include what we say, how we say it, our body language and whether it is appropriate to the given situation. Pragmatic skills are vital for communicating our personal thoughts, ideas and feelings. Children, adolescents and adults with poor pragmatic skills often misinterpret other’s communicative intent and have difficulty responding appropriately either verbally or non-verbally. Key to life!!!! How could we, as parents, not pick up on this. How could school misinterpret this? Well that summer they gave a course to all the psychologists in the school system to educate them. That’s how important this is!!!! Until my next blog! There’s always hope 🙂
If anyone is even reading my blogs, I want to apologize. I guess you are supposed to write on your blog daily or weekly, mine have been very sporadic due to my work, 2 children, 2 dogs and certainly, a husband, all of whoM require my time. I will try to write more often. Ahhhh now understanding what was happening to my daughter and moving forward. Relief always comes when you understand what has happened and why it happened, now you have to figure out how do I move forward. Okay, school is moving forward, everyone has your email address to tell you progress, but there comes the “Summer Months”!. What do I do, do I send my daughter to the day camp she despises or do I find someone else. Well first you would think, let’s ask her therapist, bad idea, they don’t have a clue because they are not that familiar with Nonverbal Learning disability. That’s okay, it’s not that common. Okay, the BEST source of information, the internet!!! Yes, this was my mission for the summer. To my greatest amazement, there are good camps that help these children and I actually found one. Of course there are great camps for this disability in the midwest, but I’m on the East coast. I found a great one only 1 1/2 hours from our home. It was a summer program in an Academy, actually it was Franklin Academy. We had to go for an interview, always a great thing! My daughter fell in love with the school!. Camp was only for 2 two week programs, but this was good, and it was a sleep away camp. Counselors on staff, a 24-7 therapist on staff and it teaches these children life skills. (Okay this is bringing tears to my eyes because for a few years I thought there was no hope!) I know if you have a child with a disability, you go through alot of feelings for your child, ie: fear, hate, anxiety, and total frustration. I am living proof there is hope out there! I found a camp that would actually teach my daughter life skills and help her, best of all she was with children just like herself so she didn’t feel alone. I never realized how important this is to a child. The first part to healing and moving on is to understand what is going on, and knowing you are not alone. Parents, you are not alone and neither are our children. This camp helped change my daughter’s life. She had friends, she liked camp, she liked living away from home! Wow! You know the saying “Seek and you shall find”, yup it’s all there we just have to search for it! Until next time, have faith, search for yourself and certainly, DON’T GIVE UP!