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Saturday, February 27, 2010

IEP Meetings

Recently I had an IEP meeting for my younger son.  The team is certain that they have the "right" placement for him, and they want me to pull him from his current class, three months before the end of the school year, and place him in another program.  They are certain that the other children in his class won't even notice, as he will be included for lunch, recess, and his specials.  And they will provide the most wonderful help with the transition - the social worker, who I do like on a personal level, with be there every step of the way to ease things for him and for us. 

The only problem is, I've been down this road before.  I know that promises made in an IEP meeting often don't translate into the reality of the situation down the road.  I also know, from personal experience, that the "team" is often trying to sell a class, that may or may not be as good as they claim it is, that may or may not even have the same teacher, or be in the same building the following year, and that they are more interested in filling their class than they are in making accommodations for your child. 

I am also not naive enough to belive that the other children in my son's class "won't even notice" that his placement has changed.  I did go to elementary school once upon a time, and I am quite certain that things haven't changed that much - kids are cruel to the "different" kids. 

I am so tired of being talked down to, patronized, and sold a bill of goods.  I don't doubt that some of the members of this team are good people, or that they are just doing their job, but I am also so tired of my child being a pawn.  I am an educated person, I know my children.  I have heard conflicting advice from so many "experts" for years now, and I am no longer dazzled by an advanced degree or years of working with children with disabilities in outmoded ways. 

But right now, I am also just tired.  When does this end?  This is my other child, the one who I thought was okay.  I can't be strong all the time.

Monday, February 22, 2010

Love This

Today I found this article, called "Love Notes for Special Needs Parents"

It is at http://specialchildren.about.com/od/needinspiration/a/lovenotes_5.htm

I really needed this today.  My older son has autism and a seizure disorder.  My younger son has been having some issues as well, and on Friday we had him tested for seizures.  We will get the results on Wednesday. 

He has been going through some testing at school.  Today I got a call from the school social worker, who wanted to know if I wanted to observe a communication disorder class that the "experts" are considering as a placement for him.  This threw me.  I knew that he had some attention issues, and he can be a bit intense, and if he is having seizures, treating them will help with these issues.  I am not yet ready to slap a label on him and stick him into a special class. 

The ironic thing is that I observed this class years ago as a possible placement for my older son.  I liked the class and wanted it for him, but at the IEP meeting, the teacher sat at the table and told me and everybody else that her class "wasn't equipped for children who have sensory needs, etc. blah blah blah".  She just didn't want to deal with having a child with autism in her class!  Long story short, he ended up in the "autism program", which was basically a sub-par babysitting class.  I really hadn't given this much thought recently, as his current placement is good, and he has been doing better lately, but having this class put out there as a possible placement for my younger son has brought back a lot of feelings that I'd forgotten that I had. 

Anyway, I guess it's all cyclical somehow.  The hurt ebbs and flows, and it always seems to come around again at some point. 

Check out these love notes - they're really great

Wednesday, February 10, 2010

Letting Go of Guilt

Guilt goes hand in hand with parenting.  This guilt can be magnified when you are raising a special-needs child. On any given day, I've felt guilty about so many things, from wondering whether I'm doing "enough" to help my son, to worrying that I'm shortchanging his brother, to feeling guilty about time spent reading a novel rather than working on remediation with my son.  I've found that guilt can be all-consuming if I allow it.

As parents of special-needs children, we live with challenges that other parents cannot even imagine. If we are to meet these challenges, we must be the best that we can be.  This means letting go of those things that hold us back, and guilt definitely holds us back.

At any given moment, I truly believe that we are all doing the best we can.  True, very few, if any, would choose to have a special-needs child if given the choice at the outset.  And yes, these feelings of frustration, of wishing things were different, can show us sides of ourselves that we want to deny. How could any of us admit to wanting something different?  We love our children so very much, but there are days when we want to just give it all away and not have to deal with it anymore.

My son's autism has brought many of my own frailties to light.  I have never been a particularly outgoing person.  I've been rather shy since childhood.  By fifth grade, I'd perfected the art of being invisible - I did what was expected of me and stayed out of the spotlight.  Even into adulthood, I have never been one to mingle easily in a group of people I don't know at social gatherings.  I generally prefer the company of a familiar companion or a good book.

Not only did I feel guilty about my "flawed" genetics that possibly led to my son's autism diagnosis (after all, if I was less than social then it can't be that much of a stretch to have a child with autism), but I also felt guilty about my inability to "blend" in with other parents whose children behaved normally and said cute things.  I felt guilty about my reluctance to advocate for my child, my natural lack of assertiveness that I had to get past when his IEP team wanted to place him in a class that I knew was wrong for him.

My son's diagnosis has pushed me out of my comfort zone in so many ways, and eventually I realized that I can wallow in guilt and self-blame, or I can grow and learn, and forgive myself, and him, and others who may or may not understand, and I can move forward with pride and strength.  I am learning to be more assertive, not only on behalf of my son, but also about my own needs and preferences, which really tended to go by the wayside during my "invisible" phase.  I'm still no social butterfly, but many times I've been pleasantly surprised when I tell a new acquaintance that my son is on the spectrum, and they smile and tell me of a close friend or family member who is also living with autism.  How ironic that it took a child with severe social deficits to prompt me into working on my own fears, and discovering that there are rewards for putting yourself out there as well.

I'm far from perfect, but I have been working on consciously letting go of the guilt.  It still pops up often.  I may be reading through one of the many online autism support groups, and come across a post from a parent who is taking a different approach to remediation than I am, and I find myself second-guessing my own choices.  I used to compare myself to these parents and come up feeling guilty, but now I try to remember that we are all doing the best we can in any given moment.  I love my son with all my heart, and I would go to the ends of the earth to help him.  I know this, yet I also know that I am one person who is limited in what I can do on any given day.  I also remind myself that the "super-moms" I come across in online groups probably have a plethora of things they feel guilty about as well, and that we are all in the same boat, taking things one step at a time, and hoping for the best.

When we let go of the guilt, we are able to be fully present for our children, and this is perhaps the best gift we can give them.  I know that my son takes his cues from me, even if it looks different than how a typical child would respond.  When I am overwhelmed with guilt and worry, he draws back, but when I am calm and emotionally present he is there with me, ready to connect in his way.  It is at times like these that his therapy seems to go more smoothly.  It is at times like these when I can let go and know that everything is exactly as it is supposed to be, whether or not I understand why.  As his mother, I am his guide in a world that can be overwhelming and confusing to him, but he has been my guide as well. He has forced me to look at some of my own shadows, and to realize that they are not as scary as I'd thought they'd be.

Monday, February 1, 2010

Resource List

Here is a list of books and websites that other parents told me about.  I have not read or visited all of these, so I am not endorsing them.  This is just for informational purposes. 

http://www.specialneedsparentcoach.com/
http://morethanamom.net

More Than A Mom: Living a Full and Balanced Life When Your Child Has Special Needs by: Amy Baskin and Heather Fawcett

Shut Up About...Your Perfect Kid! (Shut Up About. . .) by Gina (Terrasi) Gallagher and Patricia (Terrasi) Konjoian and Katie Gallagher and Daniel Terrasi 

The Elephant in the Playroom: Ordinary Parents Write Intimately and Honestly About the Extraordinary Highs and Heartbreaking Lows of Raising Kids with Special Needs by Denise Brodey 

You Will Dream New Dreams: Inspiring Personal Stories by Parents of Children With Disabilities by Stanley D. Klein and Kim Schive 


I've read The Elephant in the Playroom, and it was very good.  If anyone has read the others, or been to any of these websites, please feel free to comment, as well as share any others.  


Thursday, January 28, 2010

Your Oxygen Mask

If you've ever been on an airplane, you've heard the safety speech where they instruct you to "fasten your own oxygen mask first, then fasten your child's mask."  This is great advice, not only for those times when you are flying, but for parenting in general.  This is even more true for parents raising children with special needs. 

The other day I did a search on Amazon for books on helping parents raising special needs children.  Hundreds of books about various disabilities came up, covering a wide variety of topics on specific disabilities, therapies, advocating with school districts, working with insurance companies, etc.  What I did not find were books on how to help parents take care of themselves. 

Raising a child with special needs is a roller coaster ride.  From the moment you first fear that something might be wrong, to the diagnosis, to the labyrinth of treatment options, financial stresses, dealing with schools, etc., there is always  something that needs to be done.  It is too easy for parents to lose themselves in the process. It is a recipe for burn-out.
 
This is a blog about helping parents of special needs children to take care of themselves.  If we do not take time for our own needs, we will not be able to offer out best to our children.  This is not a place to search for new therapies or treatment options, or to get advice on how to advocate for your child.  There a many excellent blogs and resources for that.  This is for us, the parents.  This is where we can come to share our frustrations, our joys and triumphs, and the day to day realities of raising children with special needs.  This is a place where we can let go of the guilt, and for just a little while, not be the Warrior Mom, the Advocate, or the Therapist.  This is a place where we are reminded to fasten our own oxygen mask first, so we may be better able to fasten our child's.