One Step Forward, Two Steps Back

As our children with disabilities get older, so do the problems.  Lately I have been wondering to myself, when do these issues stop, do they ever stop?  I don't think there is a therapist or psychiatrist that can answer this question.  When we work through one area of problems. we take a deep breath and give that sigh of relief.  But is it really over????

As many of you know my daughter will officially start her first year of college this Fall.  She is going to a college that deals with her disability, it's small and everyone knows each other.  As she was home this summer we enlisted the Bureau of Rehabilitative Services to help her find a job that fit her disability.  This was good, they found her a retail job for 50 hours to see how she would do.  This is not what I would have picked but this is their job.  She started the job was there every day on time and left on time.  We were so proud of her.  She did tell us it was not her favorite job but it was a job.  On the second to last day of her job, she called me early.  I thought this was odd, so I called.  I asked her what she was doing home, her reply to me was " I screwed up Mom!".  She was in tears, crying on the phone.  "What did you do?"  Her reply to me was "I stole something and they caught me".  Okay so this is a parents WORST nightmare.  Okay what happened.  Luckily because she was in a disability program, they were not prosecuting, the manager who was working with her and the theft dept took her in a room made her acknowledge what she had taken, and let her go home.  Of course my husband and I have to go to BRS for a meeting with her.  She did not get paid and we sat her down to explain that she was very lucky because the police could have been called in and she could have been arrested.  Okay, so when does it end!!!!  As a parent of a disabled child, we first called her therapist and got a family appointment, then the psychiatrist and got his appointment.  Okay she made a mistake, hundreds of kids do it, but with my daughter she doesn't know why or she just doesn't want to tell us.   We tried to tell her that we are concerned with sending her to college because her decision making is concerning.  She ranted and ranted about how she was sorry and needed school.  We put this on the back burner until we went to the therapist.  

Going to the therapist was a good outlet for my husband and I, for my daughter it was another story.  She got very defensive and would not talk positively.  The therapist realized there was an issue and we devised a plan.  She would go to her twice a week to widdle out how she felt and why she did it, of course she could not talk in front on my husband and I, then we would have her tested to see if there was some underlying issues.  Once we did this then we would discuss college, I can still cancel.

The psychiatrist was the difficult part, he talked to my daughter alone, and then with my husband.  He thought that testing would not show anything but that she needed a specialist and we would have to come back the next week so he could contact a few people.  Okay no resolution, not my favorite way to end things.  So my husband, daughter and I had a conversation, she feels the psychiatrist isn't doing anything.  Really, this is about you, (my daughter) you have to figure out what's going on in your mind.  I told her let's clean the slate, let's start by making new rules, cleaning up her appearance, clearing and cleaning her room, getting rid of the old and starting fresh and then it will lead to where she wants to go.  Boy did this hit a nerve!!!! You would think I was the Grinch who stole Christmas.  Needless to say this is where we ended.  

Now, I know that many of you, parents, are saying I have done so much to help, where do I go, what do I do?  Hmmm, my daughter is 18 years old.  There isn't very much I can do without her authorization.   I have advocated for my children their entire lives and now do I give up.  I sit and think that I'm beaten down, tried and am banging my head against a brick wall.  Where do I go what do I do?  I pray that God will give me a direction, because evidently this direction has not been correct.  Parts of me want to run away, hide and forget.  Parts of me say let her go, let her figure it out, but is that real, can she even function without us.  

So as I sit writing this blog, I'm still puzzled in what to do. Do I risk loosing my daughter, have I lost my daughter, does she look at me as the villan taking everything away from her. I honestly don't know the answer, maybe "by the grace of God", I'll have the answer the next time I blog.  I really don't know.  But I do know that being a parent is very difficult, it's something we all dream about our entire lives, well, at least I did, I know it's difficult, but I never thought that I would be embroiled in such difficult decisions, the chance of losing a child's relationship, and hopefully not losing her love.  I hope I can find an answer.

Still Learning to let go ..

If you are reading my blog you are either a parent of a child with a learning disability or working with children in this area.  In this case you will understand why I am writing about learning to let go.  For all the years we have been protecting, advocating and trying to find a way to make innovative roads to help our children, there comes the time to let go.  Actually I want to correct myself, this is learning how to educate everyone else on the information you have discovered and need to tell people, so they can treat your child correctly.  When I write those words it brings tears to my eyes.  As parents we love our children so much that we will do anything to help correct what our children were born with, it's our love driven goal.  No one can understand this but a parent who deals with this on a day to day basis.  This gets so ingrained in our nature, that when it comes time to let go, we are afraid.  Yes, AFRAID.  I finally said it, I'm afraid to let go for fear the world will crush my child.  As you all know I am a parent of an 18 year old daughter that will be leaving for college.  Although she left last year for her 5th year of high school ( a great school Thames Academy connected to Mitchell College), she had supervision.  She graduated and now will be solo in her first year.  The apprehension and fear is starting to get into my body.  Alone, with one roommate, will she go to class, who will tell her she has to get up, will someone be after her for her homework.  All the questions go through my head, and my soul.  My head tells me, you have given her all the tools for success, you have guided her down this path so she can succeed.  My heart is a whole other story, will someone take advantage of her, will she breakdown, will she be afraid, I'm not there what do I do?
On a whim the other day I saw a friend on facebook, she was friends with a woman who read tarot cards.  Now I was curious, just to be curious.  Sometimes I have all this apprehension on what people read, but I saw that she was a good friend of a friend, so I made an appointment.  I went into this lovely office, pleasant, serene, and waited.  Okay I prepared myself for a very general reading, I was very skeptical.  It was my time, a very nice lady accompanied me into a serene room, quiet, peaceful, and I did my shuffling and cutting of the deck.  She started to read to me about myself, okay she was on target, giving me information and even confirming issues, really nothing about my children.  At the end she asked if I had questions, I said, "you never mentioned my children?".  She explained that if the children are adults they don't show up as much, but younger children do, so I shuffled again,  She looked at the cards and looked at me.."It's time to let go, the cards want you to know this message, you have done such a good job on your children that it's time to let your daughter go and do what she is meant to do." " Your son will blossom and really come into his own, let him do this".  I just looked at her and said "They both have learning disabilities, I have to see this through".  She looked at me with this pleasant smile and said " the universe acknowledges that you have done a good job, now it's time for you".  Wow, I had tears in my eyes and thought, it's time I let my daughter go.  She was right, it's her time, she has to use all the tools I gave her, I'll always be here for her to call and ask questions to but it's her journey.  For my son, well she was right, he has become quite a character, tall, skinny, big head of hair and a hat he never takes off.  He has a ways to go but truly he is having fun.
So I'm still learning to let go, maybe this was the universe trying to tell me IT'S TIME!

When to believe and when to really question.  I think we all, as parents, want to initially believe our children when they tell us something.  We instinctively believe they are being honest and wouldn't consider not telling us the truth.  I remember the first time I viewed the television reality show " Christley Knows Best" and all that he kept saying was "Kids they always lie, never tell the truth and you can never believe them".  I think children go through an age where they truly test parents to see how much they can get away with.  When my daughter was little she would tell me something, okay, I believed her, but then I found out the truth.  She wouldn't know that I found out and I'd ask her again, "Are you sure you did this?"  She always would give me that look like "does she really know?" and I would tell her "I always find out, God meant me to find out everything, so if you think you got away with it, think again!".  My daughter is the one who looks danger in the eye and says I can defy you, and always takes the risk.  Need I tell you I ALWAYS FIND OUT!.   I mean really, I find out.  I don't know how it happens.  She got into a car accident, and tried to talk her way out of it, I just happened to be driving by the area and saw her car.  Immediately I drove in and she stood there with this dead look on her face when she saw me.  "What are you doing here?"  Did  I not tell you I always find out.  So as the time goes by, my son thinks he can play her games with me.  "Did you brush your teeth?"  He replies, "Yes I did", "Really, let me see?" Immediately I get the death look, " Did I not tell you I always find out?"  And from the next room you hear "Listen to her she's right, she always finds out".  I think God made us psychic like that, it's not that you don't want to trust them it's just that you know better.
So with two children with disabilities, they are trailing each other.  My daughter, now 18 and feels that this age makes her much different from us all.  I laugh, really what does 18 really get you?  Your not legal to drink, you can get a job, but she doesn't, she doesn't own a home or rent, she doesn't own a car, so what does 18 years old really mean????  Nothing!  But it does mean, in order for me to talk to her doctors, she has to sign a waiver, that she gets all her grades from college and not me even though I pay all the school bills!   With her ADD, she emotionally is thinking like a 16 year old in a 18 year old body.  In college this is a potential issue because common sense has not set in, really I think common sense happens as the children mature but in these children it takes more time.  She's rebelling against her drugs, this happens.  I try to tell her that in the long run these help her calm down and really focus, but it's that 18 year old kid with a 16 year old mind.  So when do you believe, well now, with two the same way, I listen, think about what they have told me and question every move.  My daughter calls this over protective, I call it Mom's instincts.  Do they still try to pull the wool over my eyes?  You bettcha!  That's why I question everything, check up on everything, have cameras in my house (don't forget the boys!!) and first give them the benefit of the doubt, until it doesn't feel right, then investigate!
Good Luck!

Watching the disability mature.

Realizing  when a learning disability fully develops in your child is never predictable.  But since my daughter was diagnosed in High School due to unfortunate circumstances, I was not sure about when my son's would blossom.  You see I was told what his disability was but until he turned 13 years old it fully emerged.  My son's IQ is very high and he always did well in school but in 7th grade when the teachers really try to have the children become independent in their work and stop prompting, did his true disability come out.  My son does not go to a traditional LD school, but he is at a private school with less children in the classroom and the teachers are aware of learning disabilities and have some training, more than the conventional public school system.  Children with these disabilities cannot function in high populated schools, This is very frustrating to them and the teachers have anywhere from 20-26 students per class so the individual attention that they require is nonexistent.  In my son's school they are aware of his disability but he needed more guidance.  Because my daughter had a disability, I hired her psychologist to put a program together for him and present to his school so they could learn how to teach him.  I will tell you this is all new to me, so this is a pilot project.  The psychologist is presenting to the Director of the school this summer so they can implement in his 8th grade year,  I know these little things will help him learn better and really help lessen the anxiety that these children encounter in classrooms.  Having a learning disabled child and trying to help them is a huge trial and error process.  I find that I can teach him and study with him at night, but the socialization of the school environment and learning in this environment is the challenge.  I needed more for him.  Unfortunately this comes at a high financial price and believe me, my husband and I are sending my daughter to a College that helps LD children, very expensive so money is tight.  We wonder where are all the scholarships for these children?  Our kids take more to teach, hence more money in their schools.

I guess, having learning disabled children are really part of my life.  I am always looking for the key to unlock the mystery of their disabilities.  There is a key, the finding is difficult but they are my future, the world's future so many more of us need to explore.  At this time my daughter wants to go into social work and help kids like herself.  I hope this is true, one that has the disability can definitely help more than someone trying to understand the disability.

And so my mystery seeking continues,

As the days go by and you think that you have the routine down pat, everything goes arye!  I have advocated for my son with Executive Function issues and ADHD.  He is a good place in a private school which can assist him in learning how to deal with his disability and give him the time and space that he needs.  At 13 years old he is growing like a weed, the hormones are skyrocketing and his personality is definitely changing. He is excelling in the subjects that he enjoys but is not responding to the teachers in the other subjects.  Things are just not clicking.  So I need to get him clicked in.  I have hired a psychologist that we used for my daughter to watch him in class and get a perspective on how to draw him in and pay attention.  Med's are just not what it takes in this case.  We need to draw his attention to the important things that he needs to know.  One option was a reward program.  If he gets to class on time and responds to the teachers lesson he gets some extra art time during the day, whether it be in the morning or at recess time.  This works wonders with children that have something they love to do!  With my son we have done this a lot so we need to appeal to other senses.  The psychologist that we know is very aware of his issues and can put a program in place for him to get motivated.  The school he attends is very open to this procedure and can use it with other students.  But back to my point, when you think things are good and then they do arye!

I will tell you that I have my son in a great program.  In our area of Connecticut we have a center for children with disabilities.  It's called the Kennedy center.  They have wonderful programs for children to work with the disabilities they have and to be with others like themselves.  This is really key, when they see that they are not alone, they totally progress.  My son is in a class for socialization, He loves it.  The therapists are great and creative! The problem is you have to hunt for programs.  I hunted for them with my daughter so when my son came along I knew where to look.  One item off the agenda!

Until next time.....

As a parent of two LD children, it really angers me when I see articles that are directed at school systems for letting children with Learning Disabilities mainstream in classrooms with children without learning disabilities. I read an article in a local newspaper and the parent was complaining that having a teacher's aide in the classroom to help the LD children took away from the education of her child. Her complaint is why are these children in the school system to begin with? My response is REALLY!!!! Look I believe that all children have the right to the public school system, and quite frankly so does the public school system. The reason they believe they should teach them is that they get state and federal subsidies for these children which help hire and pay for teachers and teachers aides. Believe me this is quite a lot of money for the schools. Unfortunately, the people that are hired to work as teacher's aides are not educated in the newer and more difficult disabilities that children now have. I say this because in the school system my daughter went to they had no idea on how to work with or design a program for Non-Verbal Learning Disability. They literally had to hire a consultant to help them map out a plan. Once they had the consultant she opened their eyes to quite a lot of information and so much so, they educated the psychologists in the entire district that summer. So my response to the parent complaining about our children in the school system, "You are correct!", these children should be in programs that can deal with their disabilities. But there is one huge caveat, the school system does not want to let them go!!!!!! Think of the money they would lose!!!! We are not thinking about the learning ability of the child, we are thinking about the funding. Now you might think my answer should be to keep them in school, well honestly some children should be in specialty schools, I took my son out to a small school with smaller classroom sizes. I really didn't want him to slow the regular children down and not be bullied for learning differently than the others. Honestly I thought the school system would help me, to my surprise I had to fight the school system to pay for my son's education. I worked to the letter of the educational law, IEP's and PPT's for years until the time he would have to be with 2,000 students, change classes every 45 minutes, try to fit in extra help and assistance, and I looked at the smart kid with a learning disability and said, no, his sanity and peace of mind in learning are more important than keeping up with the system. I did my homework with my advocate, got a good educational lawyer and I fought the system. Please note, I did not do anything bad, I didn't take anyone to the laundry, but the state allocates a certain amount of money for each child's education and that's all I requested to pay for my child. It took me 18 months before we agreed, and I'd like to say agreed to where he would be educated. We go back every two years to negotiate and see where he is, maybe in High School he can mainstream, we will see but right now he likes where he is, he is getting a good education and he works with his disability. Look I still have to work hard for outside social programs, we are still on med's but he is happy. Yes, we have a long way to go but I'm encouraged that the road need not be tough, maybe it's longer for others but it can be good and beneficial. Yes, I still want communication with the local school system, yes I still want an IEP, it's just that I want him to work with his disability and not hamper any other student. So I still say to the parent who doesn't want that aide in the classroom, yes you are right, free our children to where they need to go to learn, there are a lot of good schools out there that can teach our children with LD issues. No I don't want my child labeled in the public school system but yes I want him to learn and be happy. All the fighting does pay off in the long run, it just takes patience and perseverance, but my children were well worth the fight, and someday they will acknowledge this.

The Journey with Special Ed Children

AS I walk up the ramp for the train in the morning, I see a wonderful sunrise. I look to start a new day, a new journey, and then begin to think of my children. Will they look at this day as a journey? Will they see that life never permits us to take the same path, and that to truly survive we must be open to new ideas, new thinking and open concepts in the world. Well much to much on an esoteric level for a 13 and 18 year old, back to reality. Today my 18 year old returns to college. She has been home for 6 weeks, a new person, new ideas, new ways of living. Certainly this was an adjustment for my husband and I, but she is an evolving being, made PLENTY of mistakes, but is on her journey to where she needs to be. Our journey as parents of an 18 year old is to guide, and as she reminds us, she is legal and 18. Yes, what does that word legal mean? Especially when you are in college??? Hmm, maybe you can drive, but since you have no money you cannot afford insurance, hence no car, you have no job so hence, you must live with your parents, you can not legally drink, oh, but yes, you can vote. So in reality, what does 18 mean? Hmm I have learned a very valuable lesson. 18 means a journey of adolescence. Spirited, impulsive, all knowing, all trying, their new beginning of becoming an adult, not a mature adult, but in actuality an adult. For a parent of an 18 year old, it's a time of sitting back and letting go. Of course for my husband and I this is extremely difficult, but we have to do it. My daughter had a rough start at school, she does have a disability. When she came home we outlined the rules, our house, our rules. No one in the house when we are not home. Seems like a normal request, not to an 18 year old who loves boys. While she was home she did great, picked up my son from school, did errands and even helped around the house. We were so pleased until we found out she had a new "love" on facebook, oh and one of the pictures was of her and the boy is her room. Yes, her room. Well detective Mom to the rescue. Really!!! Hmm not many people have surveillance cameras, my daughter did not use her brain! Oh did we see them on the camera. My classic comment to my daughter is, " I know everything, God tells me everything and if you don't think so, test me!". One step ahead! Can't lie, know the truth. Now that I am calmed down I have different thoughts. My first thoughts were security, I don't know this person he could rob me. Now my thoughts are, hmmm, she thought we would say no, so she snuck him in. Okay no harm done, yes against my wishes, but she did admit he was in my house without permission. Okay, it's not drugs, it's not alcohol, she's on birth control and she's in a safe place. Hmmm, that journey I was mentioning. Too much yelling, too much anger, saying goodbye was difficult, but essential for her journey. Her journey is hers, alone, no Mom, no Dad, her destiny. What do you actually know at 18? My son on the other hand is just beginning his journey, 13 years old. Gawky, pimples and growing!!!! Hormonal changes galore! So when the teacher writes to have a meeting because he wanders in thoughts during writing, literature and history, and cannot get motivated? Really? My son has an extremely high IQ. These are not his subjects to excel in, but at home I guide him through the writing. Tolerance, patience and Mom. Okay so home schooling is better and quieter. Here we go again, we just had a med's increase which worked, but the writing is just not his forte. We all excel in certain areas, this one is not good, but he will get through it, puberty is tough, boy do I know it with girls, now for the boys! I often ask people what it is like to have normal children, no hassles, no special ed teachers, no therapists, no drama? I don't think I can find a person who does not experience one of these issues. Okay so your child has one, mine have all, don't get me wrong, I love my kids to pieces! I have fought for each one of them tooth and nail, advocate to advocate, attorney's versus school systems, I have my battle scars for my kids. Normal? I'll really have to look this up in the dictionary! So about that journey???? It's still in the sunrise!