Monday, February 2, 2015

Aspects of a Special Needs Village: Parenting and Practice

The purpose of your child’s special needs village is of course, your child. However for your child to be successful the dynamics of the family needs to be considered.
Has the family accepted the child’s true diagnosis?
Do they agree on the educational and therapeutic course to take?
Or is one of them wallowing in self-pity because of this unexpected dynamic?
What is the child’s relationship with their siblings and other non-immediate family members?
Does the family have a support system?
Are you still grieving the diagnosis?
Has there been a huge change in the family dynamics-divorce, death, illness, etc?  

[Adapted from The School-Home Connection, by Rosemary A. Oleander, Jacqueline Elias, Rosemary D. Mastroleo, 2010, Corwin Press, Inc.]

Lets also take a good hard look at the relationship between you and your child. It is very important for you to take a good hard look at yourself and to understand who you are as a parent:

a.     Are you overindulgent? Do you make excuses for your child even though you know you shouldn’t? Do you feel bad for your child to the point that you have no standards for them whatsoever?
b.     Do you think that the pain you feel when your child struggles is more important than the lessons they learn by being independent? Therefore, you step in at inappropriate times?
c.      Do you have self-doubt about your abilities to parent this child to the point that you are actually negatively influencing your child’s success? Are you overwhelmed by the diagnosis and have no idea where to begin to help your child, so you just have given up? You simply can’t understand how these warrior-parents do it.
d.     Do you resent outside influences and feel constructive criticism is a slight against you, rather than someone from a distance seeing a family-situation that might need support?
e.     Do you see your child as an extension of yourself rather than their own person?
f.      Do you resent that your child will not be part of the “cool” group in school and that as such it will interfere with your social life?
g.     Do you accept the fact that your child might be different from the norm their entire lives, and that it is up to you to get them to the best place they can be?
h.     Does it just aggravate you that supposed support people cannot see your child first, but sees the disability before the human beings?

[Adapted from, Building Bridges with Parents, Tools and Techniques for Counselors, Marilyn Montgomery, 1999, Corwin Press, Inc.]

So what does it mean to be an overindulgent parent? This is basically what it sounds like. A parent who consistently makes excuses for their child, whether it is because of the child’s disability, because the parent is guilty about working too much, or whether the parent just doesn’t want to deal with the truth of the situation.  I actually call this form of parenting the “not my child” syndrome. You do not have to be a parent of a special needs child to be an overindulgent parent. In fact, you find these types of parents in the guise of people who also refuse to believe that their little loving child can be the worst brats and bullies in the school. A is for Accountability ; Deriding the Need to be Held Socially Accountable-When Parents are the Problem ; Brave New World and Chimps on Campus ; Sojourn Through Parental Types

In some respects this goes along with the parent viewing the child as an extension of themselves. That for some reason if the child is not perfect that means they have failed as a parent or that they, in fact are not perfect. It is a wholly narcissistic view of the world, which only tends to hurt the child.  Some Straightforward Parenting Advice

In truth, we need to reexamine our own perspectives and come to the conclusion that yes, our dear little ones can be wrong, difficult and even lazy at times.  As wonderful and as charming as they are, our offspring, can lie, can cheat, and can also be mean to others. We need to allow them to make mistakes and to grow from those mistakes. Learning to persevere and to literally pick yourself up by your bootstraps is a necessary skill needed for later in life. It is also not a skill learned suddenly at thirty years old. It is a skill that takes time to learn to deal with and takes time to figure out different ways of processing issues and how to handle them. This Time It's Your Aspie's Fault ; Lying ; Aspie or Teen; As if ; Sassy Mouth ; Luckily My Children so Such Patience for Me ; O is for Obnoxious, Opinionated and Obdurate ; Sportsmanship and Mindblindness ; Mindblindness, Obstinacy, Aspies and Adolescence Part Two

EX: No you cannot expect a 6 year old to understand how to persevere when they find it hard to read. That is where you the parent comes in. You teach them how to slowly, methodically and overtime, with a lot of hard work if need be, figure out how to read. You empathize with your child of course. But you also know that in the end they need to learn to read in order to have a successful life. The same goes for every aspect of their lives. They will not wash the dishes perfectly at first, or set the table, but in the end with practice and working at the chore they will learn to perform successfully.  Chores and Preparing for the Future

In many ways the self-esteem movement has wreaked havoc on our children. Everyone is supposed to be a winner. Everyone gets a trophy for simply showing up. Noone keeps score. The problem is that by the time you get to middle school, score is a very important part of life. Whether it is grades, proficiency on an instrument, abilities at sports, arts or even video game play, your child needs to know how to handle not being on top. Everyone cannot win, but that doesn’t mean they shouldn’t try. Everyone cannot be number one at everything, but sometimes as long as they did their best, persevered and did not give up, that is the best position to be in. As I have always told my sons, a hard won C is better than an easy A. Of course, it doesn’t help their grade point average for college acceptance or even obtaining a job. But they learn different lessons in different ways. Self-esteem: It's not a trophy, it's reality ; Entitlement, Self-esteem, Self-Importance ; Destructiveness of Entitlement ; 

Now is it easy for you to watch them fail? No it is not. Does it break your heart at times? Yes it does. But there are many life lessons to learn from failure. Does everyone have to fail in order to be successful? No. In reality, there are even times that you can try to stop your child from failing without hurting their ability to learn. Tutoring comes to mind. Why let them wallow if there is no need? Therapy is another. Providing a para is another. There is a difference between doing the work for them and providing support systems. The support teaches them how to understand what they find difficult, as well as how to circumvent their disability or lack of ability to get a desired outcome. Of Homework, Sociologists and Parenting ; I Guess I'm Not Normal

EX: When a child doesn’t do well in school, there needs to be an assessment of why. Did they not understand the assignment? Did the teacher fail to teach material needed for the examine? Did the child not understand but thought they did? Is the teacher just really bad at their job? Did you as the parent stay on top of the situation and provide your child the correct level of support? Did the teacher teach your child how to be an independent learner? None of these issues is overindulgent. It is trying to get at the root of the issue.

Meanwhile, calling up the school and demanding that they change your child’s grade because you decide the teacher is unfair, biased or doesn’t know what they are talking about without a thorough investigation of the situation is the overindulgent parent. What we also call the helicopter parent. Now we, parents of special needs children, may also be called helicopter parents, but our concerns generally are less indulgent and more practical when it comes to our children. But if anyone calls you a helicopter parent, I say embrace it wholeheartedly. It is your job to stay on top of the issues presented and to make sure they get handled properly.

However, teaching them how to persevere doesn't mean you put the child is a potentially dangerous situation in the hopes that they will learn to take better care of themselves either. There are certain situations that special needs individuals will take longer to learn to handle and in some cases may always need some form of support. (Understanding this difference really is the dividing line between typical parenting and special needs parenting.) Lessons are learned and independence is something done incrementally over the years. While pediatricians, therapists and special educators will point to developmental milestones for children, mostly to gauge the level of support needed, we must remind ourselves that every individual, especially those with special needs, functions on their own timetable, and no two individuals are ever really alike.

EX: My oldest still has support when he goes into NYC for school. While another aspergean with his IQ and academic ability might not need the support, for his safety and even classroom accommodation, our village has decided that he does.  It is important to remember that the goal is not to put him in harms way, but to enable him to become as independent as possible while he learns to deal with all his developmental and comorbid issues. And yes, every step of the way there is always a new hump to get over, a new challenge and new transition issues. The goal eventually is of course self-sufficiency, but that doesn't mean it will happen according to someone else's timetable, only his. And don't ever let anyone bully you into not providing the support your child needs at any point in their lives. Id, Ego and a Sense of Self ; OCD Meltdowns and School Behavior ; Skills, Skills and More Skills

Another aspect of parenting special needs children, and one you need to recognize in yourself for your own health and well-being, is the reality that at times you may feel overwhelmed. It is not a sign of weakness. It is a sign that you are human. We all need help and support, especially if we do not have positive-family or a support system nearby.  This is why the Internet is such a wonderful invention for all of us. Between support groups on-line and the ability to access information (too much information unfortunately at times) we in truth are never really alone. (Yes, in-real-life support is always best. But for many, if not most of us, that is not the reality.) PTSD and the Warrior-Parent ; Life May Suck But You are Still a Human Being

Finally you have an outlet, a place to venture to try to find the right answers and to try to find out what may or may not help your child. In fact some of the best advice I have ever been given has been from other parents or by autistic self-advocates. Something I would never have garnered in the days before the Internet. However, it is also important to remember that simply because something worked for one family or persons doesn’t mean it will work for you. Also simply because a self-advocate decided that something worked in a particular situation, or the way they worked through their disability, doesn’t mean it will work for your child. In all honesty all this advice really is merely a good place to start.

EX: I like to tell the story that when my oldest was first diagnosed we moved to Westchester in order to get him the help he needed. This was before the Internet became a truly viable place for support and help. We had one TV. The boys used it to watch Barney, Thomas the Tank Engine, their videos and of course cartoon network. My parents taking pity on me bought me a little black and white TV for the kitchen so I could watch adult programming. Truth be told, back them when you were alone with a special needs child, you were truly alone, isolated and no there was no support available beyond the typical therapist who quite honestly, really never did get it. Even the in-person support groups were few and far between.

Perhaps the only thing that the first therapists did offer me years ago was to tell me that my son’s disability was not my fault. Coming off of the era when the refrigerator mom was the supposed cause of autism I guess the therapists felt it was essential to let me know it wasn’t something I did. Of course I never thought it was from a general point of view. I venture to guess that we as parents will always wonder if it was something we did, ate or drank at the wrong time in our lives that may have been a factor. And those multitudes of scientific studies so often cited, hyped and repeated on our 24-hour news cycles don’t help our psyches either. The Guide to the Perplexed

But what is true is whether your child does succeed to the best of their ability in life does come down to you and your parenting skills; skills by the way that are also not learned over night. (Yes there comes a time that your child's choices are their burden to carry, but the road they choose does have alot to do with your parenting.) We too make mistakes and need to learn how to fix those mistakes. Nothing we do, or the choices we make concerning our children’s disabilities, in general, are permanent or long lasting.  Remember if we choose not to have a therapy one year, that doesn’t mean that it can’t be added the next year. Deciding to drop some special education class at one point doesn’t mean that support won’t necessarily be added another year.  Therapists, medication and education support systems are fungible in many ways. Some years they will need more and other years they will need less. It is as with most things in parenting you deal with the issues as they present themselves. The Trick is to NOT be the Asshole... ; Judging a Book by It's Cover-The Importance of Impressions ; Pragmatic Speech, The Autistic Mind and Telling Your Professor He is Wrong

Now of course in special needs parenting it does behoove us to be proactive. I like to say that we plan for the worst and hope for the best. There are any number of situations and their outcomes that are part of the repertoire that I keep rolodexed. You always have Plan A, Plan B, Plan C all the way to Plan Z. You figure out the difficulties that might occur along with the way so they can be dealt with or avoided. You figure out what would be the best approach under situation A and whom you would use and how you would use the support, theory and practicality. And yes, you also lay awake at night fighting with everyone who you feel will harm your child. It is human nature. Accept it. And no you don’t get over that part.  As my Aunt used to say, "from the moment they come out to the moment you go under, you worry about them." And yes, it is simply called parenting. And no matter how good you are at it, you will never be perfect; you can only do your best. F is for Foreseeable

Also it is important to not compare yourself to other parents and how they handle situations. You may see a warrior-parent and think, why can’t I be like that?  What drives them to be the hard-nosed or exacting individuals that they are? It’s simple. PRACTICE. Dealing with the issues of a special needs child, teaches you how to deal with the issues. This is not something anyone is born knowing. It is not something any of us would have ever thought was going to be part of our lives. So you go slowly, methodically and practically through the issues, figuring out what is the best course to take at that hour, at that minute, at that second in time. Understanding that within a few minutes the entire situation will change and you will have to regroup, relearn and reconfigure everything about your life.

Once someone asked me what I would have done earlier in my life for the boys and the answer was simple: I would have been braver earlier. I would not have worried what others think and I would not have taken crap from teachers, administrators, doctors and therapists. I would have stood my ground and demanded action. I would have gone with my instincts, instead of my denials. But as I said earlier, you learn from your mistakes. You need to learn to persevere. You figure out what went wrong, you figure out a new plan of action. You pick yourself up by your bootstraps and you carry on. Cry Havoc and  Let Slip the Dogs of War ; When You Do All You Can-Then What?


Other books of interest specifically used for this discussion: 

[Please note that these books, as the ones cited above, have been adapted to the perspective of the parent]

Family-Centered Early Intervention, Sharon A. Raver, Dana C. Childress, 2015, Paul H. Brookes Publishing Co., Inc.

From Parents to Partners, Janis Keyser, 2006, Red Leaf Press.

Parents and Professionals: Partnering for Children with Disabilities, Janice M. Fialka, Arlene K. Feldman, Karen C. Mikus, 2012, Corwin Press, Inc.

Relationship-Centered Practices in Early Childhood, Gail L. Ensher, David Clark, 2011, Paul H. Brookes Publishing Co, Inc.


Also it is important to click on the Book Review page of this blog for additional books that are recommended as a place to begin your journey.