Until the Brain stops growing

Life with children and disabilities is a never ending story.  Without the history in my family of any types of disabilities I was thrown into this realm by my children that I adopted.  As they were growing all these "challenges" were evolving.  As my children were growing, so were the different aspects of the disabilities in the world.  Non Verbal Learning was just being investigated.  Remember those kids when you were growing up in the 60's that we said were plain obnoxious?  Well they had a learning disability and no one knew.  The reason I say a never ending story is because my first child, my daughter, was making very good inroads to college and understanding her disability, until a Navy boy thought it would be in his best interest to have her elope with him.  I was lucky she got her first year of school under her belt, but she did elope.  She made a momentary decision that "love" was the be all end all, and he was being transferred and now married to my daughter would not go overseas.  Yes, this was a total shock after all the hard work and fighting I did to get her where she was.  In going through my brain I could not understand when I went wrong as a Mother.  Since I was not brought up by a very nurturing person, one who was impulsive herself, these were the things I wanted to do for my daughter.  So not being able to find a solution in my brain, I sought psychiatric help,  I am working with a great therapist who gives me strategies to deal with my daughter.  Since my daughter's elopement, she has not enrolled in school, told me she was investigating it, moved to a different state and does not work.  None of which I am in approval of.  My therapist gave me the name of a great book "Brainstorm" by Daniel J Siegel, MD.  This is about when adolescence begins and really ends.  Yes, it's in the brain and it does not end until the brain stops growing until the age of 24!  OMG I have to wait that long!  Well the good part is that we all have gone through this process and the decisions that we make are not right or wrong.  They mold how we make decisions or walk the next steps of our lives.  It molds our direction for decisions in our future lives.  

Now my daughter is in full swing of this  adolescence phase.  It is really scary to think that the decisions she is making right now, and they are hers, will mold the person she is becoming,  World watch out, it scares me.  At this age, 19 the knowledge that children have is minimal and they are making monumental decisions with their lives.  This is not like it was decades ago, The world is a very scary place, it's more difficult to make a living, let alone getting money for school.  

So my husband wait at home and find out all these monumental decisions these young people are making.  I wish they would listen to us when we say, "Choose wisely, it comes back to haunt you".  Boy does it!  But as anyone who is reading this blog will understand, no one listens, but when the brain stops growing let's see what happens!

And the summer begins....

As the school year ends for families with children that have disabilities, the new question enters everyone's mind, what am I going to do with my child or children.  The conventional camp are not made to handle learning disabled children and if they tell you they are, I sincerely tell you, INQUIRE!  Most of the camp counselors are not knowledgeable to help these children and the camp does not provide training.  It is difficult to find an affordable camp that can help your child become engaged and work with their disability.  I know, it took years of searching for a camp that would be suitable for both my daughter and son.  Luckily we live in the modern world of the internet.  We, parents, can search every criteria of what we want for our child and have it in a camp.  The downside, these camps vary in pricing.  Yes, when you need extra coverage you are paying a premium.  I will agree, sometimes my husband and I are budgeting for camp during the year versus a new stove.  You pick what you need.
I have been lucky enough to have fallen into the realm of good camps.  I always ask for recommendations, but my children's disabilities are not common and no one in my general living region knows of anything, not their fault, but of course my learning experience as as I tell everyone, this is a continual learning experience.  My children have had the privilege (yes privilege) to go to Franklin Academy in CT.  As a parent I cannot tell you how comfortable I am with the staffing, counselor and the kids at this facility.  The best find on the East Coast.  My daughter went for the first two weeks the first time she went, after that she always stayed for 4 weeks and wanted nothing to doe with us.  Okay, I buy that, but the staff always kept me informed!!! Yes, I knew what she was doing and so did they.  The great part, our children are with other children like themselves, they find out they are not this alien group that is so far from everyone else.  They accept and learn to deal with their disability.  Key, learning to deal with their disability, it will always be there but they need to work with it, not you!  Now I have introduced my son to this marvelous camp.  I did have my doubts as he is the one who does not like to leave the nest.  He interviewed and was excited!!!!  Yes, my husband and I dropped him off, got him settled and thought that it would be a tear ridden good bye.  Yeah, right, just for me!  He adjusted so well, he didn't get away from his friends to say good bye.  So much for homesick!.  He does text me some interesting tidbits.  Yesterday he told me that he tried scrambled eggs for the firs time.  I asked him what they tasted like, his reply " They tasted like what I thought a protein would taste like, bland".  Okay really, protein?  Really!  He texted me a picture of his dorm room.  I said you didn't make the bed?  He replied " Mom don't your remember the sheets blend into each other!"  Really, okay he's adjusted!!!
There are times when you doubt life, why is my child like this, and how is he or she going to get through life with all these issues.  Life survives, children are resilient.  This generation will survive and these children, as I have always said, are God's chosen.  They will triumph and make believers out of the rest.  God gave them these issues to help other overcome normal issues.  I truly believe this and my kids are proving this to me.
And so, the summer begins.

Perserverance Pays off

I know that most of the Mother's out there try really hard to accept what their children have inherited.  They try to cope and work to help their children.  We talk to people, we ask for help and are always seeking a new and better way to help teach our children to become independent and get the education they truly deserve.  During these times patience is almost never there but always required.  I know that it can be a long hard road, and sometimes you sit back and say "I'm going to quit", the system has beat me.  I'm here to tell you that  all your hard work and patience will pay off in the end.  It pays to persevere.
Probably the most tedious and painful trip is advocacy in school and working with the school system.  This is a troubling avenue.  On one hand the system tells you that your child cannot keep up, or conform to the ways of the system, yet they put you on a 504 program and bill the state and federal government for assistance in the areas your child needs.  After periods of time, when the school system cannot comply, you go to take action.  I'm the first person to tell you to DEFINITELY get an advocate, whether you go to the State or hire your own.  This is the best investment you can give your child.  These people know the laws, they understand what is going on or what needs to be going on. These people are quite insightful and fight for your child.  I will admit I thought I was a good advocate for my children, and I think I am, but the advocate I hired was great!  I was basically always there to confirm what she recommended. Yes, your child needs more, yes it should be part of the local system, and yes you will fight for your child's rights.
The next step is if the system is educated in the issues your child has.  The beginning is good but you don't see anything better happening.  They seem to be pushing your child along.  You bring this to school's attention and they "fluff" you off saying it takes time.  Bring the advocate in again!!!!  The key to having your child taught differently is that they can actually learn from the teacher.  They can only learn if the teacher is trained in this field.
Believe me it's a long journey but perseverance does pay off. It takes a lot of fighting, such a shame since we all want the same goal, educating children in a different way so they learn.  Once they fine tune what your child needs, now they will come home and you will see a difference.  They will be happier.
I had to make a big decision to put my son in private school.  It was a tough call and I wonder if I made the right call, but three years later, the child is happy, educated and adjusted.  He is happy where he is, has friends of all ages, no bullying, no labels.

This is a time when all my perseverance did pay off.

Patience

As I am a total advocate of pursuing the correct legal person to help in attaining the support children need in school, there also come a lot of patience that is involved.  In my mind everything has rules. There are rules that we must follow in order to attain the goals we are striving for, in the case of my son, the goal is to get him an the education he requires and for that education to be taught to him in the way he can comprehend.  Most of the time if we do not monitor this ourselves and leave it in the hands of teachers that are not versed in the disability our child has, we waste very valuable time for our children.  So as you are aware, my choice to put my son in a school where they can teach him the way he needs.  In doing this I must go by the rules of getting reimbursement from the child's school system.  So why is it that I play by the rules and they don't?  Why is it that I do what the State requires but the school system breaks all those rules and doesn't get reprimanded for it?   The State has dates, times and regulations, if I do not follow, my attorney gets reprimanded, but if the school doesn't abide by the rules do they get penalized?  No I do.  I had a mediation scheduled for December it was cancelled (word to the wise, they are always canceled in December) and was to be rescheduled in early 2016.  Really, the system had 45 days to answer my attorney, okay it was March before anyone even got back to my attorney.  For me, patient as I am, the school year is almost gone and no payment,  As many people are aware, private schools for our children with learning disabilities are expansive. We are a normal ordinary family that both parents work.  It seems like half the time I work for my children's education,but I guess that's what we do.  The only gratification I receive is that my son is healthy and doing very well.  He is well adjusted and learning at a very healthy pace.  This helps pass the time and helps me gain more patience.  I do have a date for mediation, it's 2 months away, just in time to start new litigation for the next years school.  A vicious cycle.  Patience thank goodness it's what Mom's are made of!!!!  I hope this time around it becomes worth it!

A Mother Always Transitioning ...

I think the major misconception of being a Mother is that the most difficult and sacrificing time we have is when our children are little.  By little I will clarify under 18 years of age.  Now for most Mother's this could be quite true but for Mom's of children with disabilities, this becomes more difficult.  Transitioning to adulthood, have more people criticize, adjusting to more complex ideas and ways to work in the system.
Now that my son is 14 years of age, 5'7" he appears to be older than he is.  This goes without saying that children physically go through a huge transition and the lag behind is the emotional and mature self.   Even though normal children ( we need society to really reclassify normal) chronological and physical age is not that far off, but in learning disabled children the gap is far more.  Both of my children have ADD and ADHD, emotionally they are both 3 years behind their age.  This is very evident and difficult for outsides to understand and a lot of times I have to remind family members that this happens.  So my son is 14 but he's thinking patterns are more on the 11 year old spectrum.  Although he has a very high IQ and can work with his actual grade level and higher, emotionally it's different.  We just went to his psychiatrist, which we love, Now  he goes in by himself and talks, then I go in.  The psychiatrist asked him if he knew why he came to him.  He very slowly said no, okay not a problem, a very simple answer.  This doctor is the professional that can dispense the medication you need and really identify your issues.  The doctor proceeds to ask him if he has encountered any issues at school, he tells him some minor issues and then the doctors asks him are there any things that bother you at school that you wonder about?   His answer was really interesting, Yes, why do you think I have friends that are younger than I?  The doctor said does it really bother you that much?  My son replied, no not really.  The doctor responded by saying, then if it doesn't bother you forget it. These are your friends, enjoy them.  This is his emotional side coming through.  Documented material on ADD and ADHD states that at the age of 25 the emotional and chronological merge and there is not any real difference.  The brain stops growing, not developing, growing.  My son is in a safe environment, we feel that smaller is better for him.  The public school system is way to vast for him, in better terms overwhelming.
I encounter this with my daughter also, she is 19 and really is thinking like a 16 year old.  Although I can see that maturity level starting to get closer.  Although her decisions are quiet impulsive, there is some thought put into them, not enough but getting there.  Maturity is starting to be visible, and responsibility is coming out.  My daughter placed herself in a new situation where she has to comply to  change as she eloped and now has to deal with the decisions she has made.  These are not decisions we are pleased with BUT, he commitment and perseverance to them is quite astounding.  These lessons we could not give her and she must master on her own.  The hardest thing I've had to acknowledge is that this is her journey, I've supplied the tools, now it's her show.  She must see if the tools I gave her are enough, and how does she use them.
Both my children are getting older, I have been told that I have to let go. Hmmmm we've been their protectors, advocates and their teachers, I guess I'll always be a mother transitioning.

Starting 2016

As the New Year begins I am trying to regain all the thoughts and new routines to get into.  As we were supposed to have a mediation with my school district and it was cancelled, waiting for a new date, patience is not my forte, so that we can plan,   I understand everyone has a backlog and my backlog incorporates money!  No one ever moves fast in the beginning of the year, but I need to move on,
Anyone who has hired advocates or worked with advocates (attorneys) knows this process can be very long and arduous.  Although, I seem to be a pest to these people, I do pay them up front, I need to move things along.   As I have said before I am very pro-advocate. These ladies and gentlemen know their business and work to help you with your school systems and get special attention to your learning disabled child.  I've been using advocates for close to 6 years now, remember I have two children with learning disabilities!  So I guess I am going to be a pest to my attorney yet again, to get the state moving with the school system.  My big move this year is my son going into High School.  The school system we are in, the High School, embodies over 2, 000 students.  The private school that my son can navigate has 300 students.  The trauma he would endure to try and find classes, encounter different students (bullies) is far too high for him.  For all the good work getting him to really work with his disability and really work on his socialization would go down the tubes.  My husband and I are not willing to put him through this.  It's like losing him to a maze of uncertainty. We have hired psychologists that can back us up on this so now we go to the fight. But the price tag for private High School jumps quite a bit, so the fight gets harder.  We feel the fight is worth one human being to come out successful and be able to work in society than not.
So our fight begins.......

Another Year's End 2015

I know that I have really blogged on so many Learning Disability issues on my own kids, I guess I need to reflect on all the "unusual" incidents that have keep me writing,  I must say there have been some good occurrences that I hope give guidance and optimism to other people.  As I have said many times, having children with disabilities is a very difficult situation, especially learning disabilities.  There really isn't a lot of documented history on what happens to children and really, nothing that gives hope for parents.  Sometimes this is very discouraging, but if we write, tell each other different things that happen to our children it can lessen the feeling of disillusion.
My son was not doing well in the being of 2015, but I was determined to figure it out and help him.  I am by no means, a doctor, psychiatrist or therapist, but I am his Mom and I know him.  He was 13 and growing at a Teen rate. Know that with all these emotional and physical changes so changes the disabilities!  He was not doing well at school, his pediatrician increased his medications, this seemed to do the trick but  you know I really was not keen on this.  I brought him to a psychiatrist.  He was at an age where someone really knowledgeable in these drugs needed to evaluate him. I had him tested by a psychologist and had her evaluate him in school.  I know this is not monetarily feasible to most, but I begged borrowed and got the money to do this.  This was the best dollars I ever spent on my son.  This wonderful person saw him in his classroom, talked to him and put a plan in place for him.  We met with his school ( private) and they helped implement them.  I cannot tell you how well he is doing.  Then with the monthly trips to the psychiatrist, he has brought down his medications and he feels good.  A very positive year of learning, on my part and my son's.  Always question, always look for more, it's there and people will guide you.
For my daughter, I wish love, good vibrations and a hope that she can continue to do well in school and find herself.  My daughter is 19, she has a year of college under her belt, but she was looking and found a person with which she married.  As parents this was not our wish for her now!  But this person asked her to marry him because he is in the service and was moving.  The service will take care of her and give her an education, so, I'm hoping that she can find what she is looking for and still educate herself.  She knows she will always need medications, she will always need a therapist, We, as parents, only hope that all the tools we gave our children, fought for our children are embedded in there brains, and at some point they pull them up and use them.  My daughter is extremely strong willed, she does want to succeed, but awww that young love.  We have all experienced it and it took her.  My wish for her is to find the person she really is, make sure she's educated so she can always survive and look at life as a journey. A journey that is exciting and can be the greatest gift we all have.  Oh yes there are up and downs, but each one of us has a journey that gets us to the pinnacle of why we are here.
I have always looked at my children's disabilities as gifts.  Yes, gifts, they have to try harder, climb the mountain in a different way, but in the end those difficulties are what they teach us.  They teach us that no matter what hurtle, it's not surmountable!  We can do it, they will do it and prove to each of us that they have the courage we taught them to have.
Let's see what 2016 brings!