I remember when I was so desperately trying to have children and we finally were chosen by birth parents to get my daughter, the words the social worker said to me " Children are a gift from God but for only a short time, they grow and then we have to let them go." As I sat at my daughter's high school graduation last week, the tears streaming down my face in happiness. I saw this little 5lb girl grow up, handle all the adversities God put in her way, and now she was in this beautiful white graduation gown holding a red rose and walking down to end the years in this school system. I was so proud, that for a moment it wiped away all the heartache of her disability. For this time she was just like every other child that was graduating high school. She had a smile, and was so relieved to end, what has been, the most difficult years of her life. On this special day my daughter had quite a lot happen. She went to her senior breakfast, had a quick rehearsal for graduation, received a call that she got a job as a camp counselor in a local camp and had to submit all her paperwork and on the way home got a flat tire. Before she got dressed, I was painting her toes and she broke down. "Mom I'm scared, do you think I can handle being a camp counselor, do you think I am going to do okay at college? Do you think everyone will accept me?" Wow, so much for one small girl to handle in one day. I looked at her very calmly and said "Calm down, take two deep breaths!" First I told her, you are going to do your best at working as a counselor and if it doesn't work out, you quit. Second, college is your new beginning, fresh, you will be with kids that have the same disability as yourself, and third be yourself, you are a great young lady, be the girl you really are! The tears disappeared I gave her one of her pills to calm her down and told her to take a nap before graduation. The child that emerged was this confident girl that ended the 12 years of school. It goes fast, too fast. There are times when issues with the teachers, learning, aides and seeing the school's telephone number on my caller id would just turn my stomach. What happens now. Now a new chapter emerges, going away to school, making decisions on her own. My husband and I are trying to be real, yes, we expect some trauma, and hearing from the new school. My daughter's disability encompasses difficulty in transition, so we are preparing ourselves, we could be pleasantly surprised but I doubt it. I'm being realistic. Two days later we had my daughters graduation party. As a child with NVLD and ADD my daughter does not have a wide scope of friends. Most of them have the same or similar disabilities. I was so pleased when 5 of her friends came to her party. She was so proud and introduced each one to everyone. She had a great time, but the one thing that was so impactful to me was this. One young lady came to her party, she was so happy that my daughter invited her to this party. She said "You know no one ever invites me to their parties because I have ADHD, and I am having such a good time!, Your daughter has been a really good friend to me!". This was so important to me because this is how my daughter was, no one invited her anywhere because she didn't fit in, but she overcame this stigma and made friends with children like herself. She found the people who were worth being friends with and turned it around. If she can keep this philosophy throughout college and life, I truly believe she can have a good life. Understanding, the disability, knowing it's going to be with you for the rest of your life and working with it are the keys for these children. I've always stressed to my children, everyone else is different, you are special and never forget it! God made you this way to learn, you have a special purpose in life, the hard part is to find what it is. As parents we are the ones who have to guide them to this purpose. It's tough, we live it every day, sometimes we cry and other days you say, they did it, they actually did it. Until next time!

I've been slightly remiss in adding to my blog, the ending of a child's or maybe I should preface this with the "young adult" high school years is quite overwhelming for parents. I can hardly imagine what it is for these children. As I close on the 12 years of schooling my child has encountered, I remember all the trying and difficult times that we have gone through and how she has dealt with anger, disappointment, self-learning, finding her real self with assistance, and really achieving after long hard work. In life of a child, school is totally monitored by the teachers, they comment on what they see, advise an how they feel a child should learn, and you as a parent either agree or disagree and look for the correctness (if this is a word) of what the child needs. Being the parent of a special needs child we always wonder, "Did I do the best I could?", Is she going to carry all the things she has learned on to the next step?" "Are they mature enough to understand that medication is always going to be part of their lives?" "Can they cope outside of all the support they have gotten in school?". Believe me these questions all have been crossing my mind in the last 30 days. My daughter seems to be on a healthy path, she has demonstrated that she is maturing, there is plenty of room for growth, how will she be on her own? I have found that it is a scary path, but it is time that all the training, parental conversations, and guidance I have given must prove itself, and I must let go. The letting go and trusting judgement in every child is difficult regardless if you have a special needs child or not, but the parent of a special needs child has it hard. We HOPE, and I emphasize the word HOPE that my child remembers that the medication she is on is for her benefit, not the drug manufacturers! I hope she realizes that alone mistakes have HUGE consequences being away from home, and that teachers are not going to hover over her and tell her what to do. I have to hope and pray that all the lessons that I have taught her, her support groups have told her and her therapist has reiterated to her, have passed on to the part of the brain to REMEMBER!!! One last item I must share. My daughter has chosen a very good college that deals with her disability, we are very pleased. She had her orientation, an overnight stay. In these two days she would meet students that will become a very important part of her life next year. When she came home she told me that she met a friend she went to camp with, and a friend from High School was there. I asked her if she picked a roommate and she said " You know Mom the girls were all drama queens and talked about drugs, I found my friend from camp and two of his friends and we hung out and were known on campus as the Four Musketeers!" I know I am going to like school and to hang out with them." Part of me was concerned but part of me was very proud! My daughter was able to distinguish between what was good for her and not! I'm keeping my fingers crossed that this is a path she continues on and keeps flourishing on it.

Coming to the end of the school year, I have to write a post that really comes from my heart. For all the year's that I have advocated, guided, controlled, and most importantly, helped my daughter in school and life, we come to the end of her high school years. I have tried to write about all the issues that I feel people should know about, how I dealt with them, and maybe, someone out there can glean some information for their child. This past weekend some pretty monumental occurrences happened in my daughter's life. The first huge hurtle was that she drove herself to and from school last week. Why do you say this is monumental? Well my daughter has NVLD and an anxiety issue in which she doesn't display much self confidence. Driving alone and to a place that she knows is Huge! I am so proud of her, this is a life skill she will need for the rest of her life. This skill is what is going to help her get to a job, and help us as a family. Big Hurtle! The second monumental hurtle was in school. In my daughter's high school in order to graduate they had to complete a capstone project. This project was given to them in Junior year. They had to pick a profession that they felt they would like to go into and pick a mentor. In picking this mentor, they had to log in time hours and at the end present to a panel of peers and teachers to pass and graduate. My daughter took this project head on, went and advocated for herself, found a mentor and proceeded do her project throughout the year. Yes, there were hiccups, don't get me wrong but they have finished the process and now they have to present. On Friday my daughter's Special Education teacher wrote me the most wonderful email I could have gotten. She asked my daughter to give her presentation to her guided learning class, as sort of a pre-presentation. She said that she was not nervous, was poised, confident, head held up and knew everything she presented. She presented for 10 minutes straight. She wrote that she was so proud of my daughter and that if I were there I would be just as proud. Cry, you betcha! For a child that had no confidence, very little self esteem, I knew that everything that she worked for throughout the years all paid off and will continue to be with her going forward in college. Don't get me wrong there will be setbacks, but I realize now that setbacks are all learning to get her where she needs to be. Of course the icing on the cake was that this weekend was the prom. Yes, she had a date, and it was lovely. She met her friends at another girls house and they had a great time. Another monumental hurtle, ADD and NVLD had difficulty with keeping friends. This was most rewarding seeing her have friends that she had a good time with. This took quite a bit of work and group therapy on her part, but it certainly paid off. I guess my advice today is patience, perserverence , love and hope, these are key to helping your child.

As my child goes from summer camp, school and now graduation, we come upon the most difficult time in a child's disability, the first job. Although my daughter has babysat in the neighborhood and made lots of money,the economy is such that those jobs are few and far between now, as more people are staying home. Plus I might add more children are looking for these types of jobs. At the lovely age of 17 my daughter has started looking for the "summer job". I tried to have her start early before the college students start to emerge! Actually she did very well, people were accepting her applications in March. She wanted to work in the restaurant environment, not exactly what I wanted. My ideal job for she and her disability was the local day camp which she had gone to for many years and my son attends. How convenient, she knows the lay of the land, very important for children with NVLD. Although she felt she would be bored, she did put an application in. I also complied with the restaurant environment. I know my daughter and I were toying with whether we tell people upfront about her disability and quite honestly I'm still up in the air about it. I wasn't quite sure how her first experience was going to be. Well she got a call to work at the restaurant as a bus girl. Okay, it's fast paced, and she can expend all her energy. Well on her first day, she was to trail the current bus girl. I get a telephone call to pick her up 3 hours after she got there. The manager did not feel she was a fit for busing. My worst fear has happened, my heart bled for this child. Her first job where she really wanted to excel. When she got home she and I talked. It seems that she asked too many questions, for the table numbers, unsure of how to cut bread, the manager felt she had too much energy and was asking too many questions. When my daughter picked up that the manager was getting irritated, she confessed and told her about her NVLD and told her " I ask a lot of questions and it takes me longer to learn" please be patient with me. So now we confessed to the disability. Was this wrong, I feel that she did the best thing, she tried to explain why she was asking questions. Yes, she was very disappointed, and hurt. Does she only get 3 hours to train and learn? We spoke for a long time and I asked her if she wanted to go back, she was unsure. The manager said she would call her the next day and maybe she could do to go orders. I told her that she should tell the manager that she would like another chance and see what happened. The manager was supposed to call her on a Friday, today is Monday and she finally called her to speak with her. I don't know what the outcome is but I know that my daughter is making the correct decision for herself. I could have called and inquired to the reasoning behind her leaving early, but this is my daughter's destiny, she has to pave her own way and really fight for what she wants. I never thought it would be so difficult for her. She has had a difficult time in school learning and now the world is posing the same obstacles. My greatest hope is that she can cope with the world and how much a stigma disabilities are.

Understanding and moving forward

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 sporatic 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!

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 meeatings 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 interations 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 :)

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 accommpanies 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....