Friday, December 23, 2011

A letter of great importance, please read...

Dear School Personnel, Community Members, Teachers, Parents and Neighbors

 A wonderful blog post I found Posted by Marianne , re-posted here with permission, original post can be found on the blog  The Life Unexpected
To Whom it May Concern,
I am the parent of a special needs child.  I was overwhelmed, confused, heart broken and struggling to unravel the complexities before me.
Please do not pass judgement of me without knowing why I did not attend the school PTA breakfasts or community picnics.  Please take a few minutes to understand why I did not take you up on your offer to have lunch or grab a cup of coffee.  Although we see each other in the supermarket or at school functions, I don’t think you really ever knew me, actually, I can guarantee that you did not know me because just as my child was different, so was I.
I was in survival mode to keep my family in tact and to give my child the best quality of life possible.
I was presented with parental decisions that have torn me apart and kept me up more nights than I can possibly remember.
I had spent most days of the week at therapy and doctors appointments and most nights up researching treatments and medication options.
I was forced into isolation at times due to the stigma and misconceptions that are epidemic in our society.
I became proficient at prioritizing my life and learning to let the little things go, to look at others with compassion instead of tabloid material and to turn a blind eye to the stares or ignorant comments.
I did the best I could.
I survived.
I am one of the lucky ones, my child has blossomed and has exceeded all our expectations.
I have now become strong, I have become confident and I have become a fierce advocate for parents of special needs children.  The growth did not come without much pain and many tears but it came.
So I ask you, please
The next time you see a parent struggling with a raging child, a child terrified to go into school, a child making odd movements or sounds, a child that seems to be in a world of their own… .Be kind.  Give a smile of recognition for what that parent is going through.  Ask if there is anything you can do to help, give them a pat on the hand or offer for them to go ahead of you on line.
The next time you have a birthday party for your child remember that their child has a hard time with a lot of sensory issues and social situations.  Please send their child that invitation and know that more times than not they will not be able to attend but appreciate being included.  Understand that in order for their child to go to the party they may need to stay for a little while and please make them feel welcome.  When they let you know that their child cannot make the party consider inviting that child for a one on one playdate or an outing at the park.
The next time you are grading homework papers please understand that their child struggles, some with learning disabilities others with the exhaustion of  their disorders or the obsession with perfectionism.  The Perfectionism is not necessarily to have the answers right but to have it “feel” right for them.  They have spent hours doing what most can do in ten minutes. A paper returned with red circles and comments only hurts a child’s self esteem and causes school anxiety. Please understand that when they see the school come up on their caller ID their hearts sink, remember to tell them about all the gains their children are making as well as their deficits.  Take a minute before that call and know that they appreciate all you do and want  a collaborative  relationship in their child’s education.
The next time you are in the teachers lounge, please do not discuss their child.  Please do not make negative comments about their parenting or their child’s behavior, it gets back to them and it gets back to other parents in their community.
The next time you pass the cafeteria and see their child sitting alone please consider inviting that child to eat lunch in your classroom and be your helper that period.  Consider working with a guidance counselor to set up a lunch buddy group in a different area.
The next time they are at the CSE meeting planning their chid’s IEP know that they are educated, informed and confident knowing special education law.  Know that they have found the courage to stand up to conformity and will explore every option to give their child the differentiated educated that will show their gifts and not just their disabilities.  Understand that educating a child with special needs is one of the most difficult tasks a parent can face,  know that the last thing they want is an adversarial relationship.  Please show them the same respect they show you.
The next time you are creating an educational plan please take into consideration that their child may have specific interests or obsessions.  Foster those interests, instead of taking away that art class for a resource class consider adding an art class instead. Think outside the box, these parents do.
The next time you see that child in a wheelchair unable to speak or control their movements, don’t stare, don’t look away, say hello.  Do not assume that because this child is nonverbal that they are not intelligent or do not understand the awkwardness that you feel.  Take a moment out of your day to show kindness, support a parent enduring incredible pain and just give them a smile.
The next time your child comes home telling you how Johnny or Susie is so weird, take the time to teach about differences.  Take the time to talk  about compassion, acceptance and special needs. Please remember that your child learns from you.  Be a role model, mirror respect and discourage gossip.
The next time you hear a comment about how out of style these kids are, educate about tactile sensitivities and the fact that these kids cannot tolerate many textures and fits.  Imagine what it would feel like to have sandpaper in your stilettos or tight elastic holding on your tie.
The next time you see an out of control child do not assume it is bad parenting.  Understand that many of these disorders have an organic basis, are biological and are real illnesses. When you hear the words mental illness, take out the “mental” and remember  ”illness”.
Know that it is this generation that can stomp the stigma and create a world of acceptance.
The next time other parents are talking about “Those Kids” be our heroes, stand up for us.
The next time you see a special needs child know they are not just special in their needs but in their brilliance as well.
Take the time to meet our children.  Take the time to know us.

Saturday, November 12, 2011

A afternoon with my little man!

 Growing up so fast!

 Silly boy!

He loves his dog! 

Saturday, October 15, 2011

Drama, Drama, Drama, and ALWAYS tape your IEP meetings!

Well we finally had a meeting at school concerning "A" being suspended. It amazed me that some in attendance felt the meeting was unnecessary, considering how high my son is academically. I wonder how many of those people would have just stood by while their Kindergartner was suspended, then I hear that the "hitting" incident was most likely accidental? Wow! Personally they don't realize how nice I am being about it. I have had several advocates advise me that I should file state complaints and/or a complaint with VOPA. I do know that I will be keeping a very close eye on things from now on.

Now lets move on to happier things. In spite of all the drama (and that is what it really is) "A" is doing well in school. Academically he is kind of brilliant if I have to say so myself, but this is not a new revelation to me, I knew this when he started speaking well above average when he wasn't even a year old! I knew this when he was memorizing songs and singing them at 15 months old, he is a smart kid!

I am being told that the sensory issues that are so rampant in Alex's life and even noted at recent OT and PT evaluations are non existent at school. Personally I have my own views on that and I won't go into that here at this time.

Alex also is quite the social butterfly at school according to the powers that be, great for a child with Asperger's. I am thankful he gets along with the other children (when he isn't being suspended for "accidentally" hitting them). But, I also know what he comes home and tells me, I don't think what the teachers imagine they are seeing and how he perceives the situation are the same thing at all. But, you can't always argue with the "professionals" after all who am I? I am just his mom, who also just happens to have a degree in Education and several Masters level courses toward a degree in Special Education, what do I know about any of it?

After giving the proper 24 hours notice I taped the IEP meeting. Best decision ever, I will be taping all of  our IEP meetings from now on! As I listened to the tape I was amazed at how much I forgot, and also at some of the things I heard! I would advise all parents to consider taping IEP meetings. Check your state and county regulations!

Tuesday, October 4, 2011

Getting Sleepy!

It's been a long time. I don't know where to start. We ended school last year with some measure of success. Meaning we were having more good days than bad and "A" was actually learning something. We started Kindergarten the same way, we had weeks of "good" days, "A" is learning, learning, learning, I am not surprised, he is a extremely intelligent child. What bothers me is when the learning stops, when a child who was at one time deemed "to intelligent for a IEP" ( I kid you not, can you believe someone would say that), well when this child starts struggling again, when the worksheets are sent home not completed on a almost daily basis. When he tells me: "I hate school", "I'm tired of doing the same thing every day", "I hate singing songs, I hate worksheets, worksheets, worksheets",  and to top it all.... when my five year old is suspended for behavior that is a direct manifestation of his disability, not new behavior, but behavior that has been going on since Pre-k.  All of those things bother me.

I have been told by at least one professional that the only way my child would reach his full potential is to remove him from public school, I have been told by yet another professional that I would do him a great disservice if I pull him from public school. I just know I am tired.....

I'm tired of having to fight every day for the education my child deserves. I'm tired of notes from teachers saying that "he is acting like a regular Kindergarten child" one week, and then a suspension two weeks later. I am tired of people not doing their jobs, not following his IEP, not trying to make the classroom environment conducive for learning.

You can't put all children into a pot and expect them to learn the same way, you can't expect them to be happy, you can't expect them to conform. I have a education degree, I am not the dumb "crazy" mom they suppose me to be....I studied some Psychology as well. I know all about Gardner's Theory of multiple intelligences.... I know that even "typical" children learn differently, it is not a one size fits all model. So what I really have to wonder is...How do ANY of our children ever learn anything?

Yes I guess I am in a bad mood. So I am going to find something to be thankful for. Sometimes it is hard to be thankful, I mean I ask myself on a daily basis, why me, why my children? I know things could be a lot worse though. So here are a few things I am thankful for:

  • I am thankful for my children, I am thankful their little quirks and how they make life so interesting, I really can't imagine them not being just who they are.

  • I am thankful for the many wonderful people God has put in my life, the people I would have never met had it not been for our situation. People who are a blessing in many ways, some of them don't even know it.

  • I am thankful that things aren't worse, I am thankful to be able to hear my children's sweet voices, I am thankful every time one of them climbs on my lap and says "I love you". 
  •  I am thankful to be able to hold them in my arms, I know all to well what empty arms feel like.

  • I am thankful to God, though I know at times I feel so alone, God is always there, even in the times that it feels he is so far away, there is always that small whisper.

"Let your conversation be without covetousness; and be content with such things as ye have: for he hath said, I will never leave thee, nor forsake thee" Hebrews 13:5.

"A" with his friend!

Wednesday, July 27, 2011

The never ending fight...

I promised in one of my other posts that I would talk about fighting. Having two children with disabilities I can choose to do one of two things, I can either sit back and let everyone else make decisions for my children. I can let them decide how much therapy they get, what services are offered (if any), etc.

Or...... I can fight for what my children deserve, I can fight for their rights to live just as full a life as the "typical" child sitting next to them.

Fighting isn't easy, sometimes it seems like you never win, that no matter how hard you push, how many advocates you talk to, how many laws you know, well that you never get anywhere. I remember a saying from my son's NICU days, one baby step forward and three big steps back. That is often the way it goes in the world of special needs. It seems like I get one small tiny victory and then something (or someone) else comes along to say, hey I'm still boss, guess I showed you. What can I do but keep going. I know I am making more enemies than friends, though I don't intend for it to be that way. I can't understand how a parent who fights for her children's rights, who tries to see that they have everything they need to succeed, how is it that this parent is often considered a nuisance, a pain in the neck, often "crazy".

 I have actually seen Special Education Teachers blog about "crazy" parents, not that I'm saying there aren't some crazy ones out there. Just because a parent is fighting for what they believe in, does not make them crazy! I could put up examples of what I have endured so far in trying to get the services my children deserve, but I won't, if I do I am not much better than those teachers who slander parents on the Internet. A parent fighting for their child does not mean they are crazy!  It means they are a warrior! We as parents need to stand together for our children, maybe then we can begin to win a few battles, maybe even a war!   Are you a  warrior for your child???

Two of my boy's! 

Saturday, July 23, 2011

Weekend Blog Hop

Join me at Lucas's Journey with SPD for some blog hopping fun! I hope to gain some followers for my blog and some new friends, we can never have to many friends in the world of Autism!

Sunday, May 22, 2011

Happy Birthday!

A. is five! It is hard to believe that it has been five years since the nurse put that little red headed baby in my arms. What a happy day that was. After my oldest son was born and years were spent trying to conceive, it was a wonderful surprise to find out my A was on the way! We celebrated with his brother who also had a recent birthday at a birthday bash at Fun Expedition!  Here are some photo's from the day!

The Birthday Boy!

Opening presents!


Wednesday, March 30, 2011

Life of the atypical parent....

Hi everyone, it's been a while. I am feeling out of sorts and have been that way for a while. There has been a lot going on with both of my children and I feel like I am being pulled in a million different directions. For some reason this is just a difficult time of year in many ways. There are so many days that I feel like I could just crawl in bed and stay there, but I don't have that option. Being a parent with special needs children is difficult any way you look at it. I have had the honor to meet so many great parents, parents who will do whatever it takes to make sure their kids are getting the things they need. But, it is overwhelming and you often feel like no one could possibly appreciate what you do. So do you want to know what it's like being a parent to children with special needs? Well, here is what it's like for me anyway!
1. Get up and drag yourself out of bed, rush to make sure that everyone gets where they need to be on time, even when one child decides to take all of his clothes off at the last minute and the other is refusing to leave the house without his "bad guy" transformer and at least three Superheroes and you can't find any of them....
2. Finally get one child on the bus and get the other one in the car, get stuck in the last minute rush, try to park in disabled parking spot only to find the ONLY two spots taken by someone who DOES NOT have a disabled tag or decal, and have to get tardy slip for being one tenth of a second late.
3. On the way out the door be stopped by someone (therapist, principal, other school personnel), telling you they need to discuss something with you.
4. Come home, get online to try to research the best possible therapy for your child's situation, find the greatest thing, google it and try to find therapist in your particular area, no luck...
5. Call doctor thinking she may be able to tell you something Google didn't..... find out, yes that is available, if you want to drive two hours.
6. Grab something unhealthy for lunch and then call all of the people who are expecting you to call them back....
7. Talk on the phone for what seems like hours...
8. Glance at the clock and realize that it is almost time to go pick your child up, rush out, stop by post office or grocery store as fast as you can.
9.Fight the after school traffic, don't even bother trying for disabled parking as they are all blocked anyway....
10. Pick up child, talk to teacher, rush home in time to get other child off of bus..... OR
11.Realize that child has 4:00 appointment in location that is 30 minutes away, call someone and beg them to get other child off bus for you.
12.Rush child to appointment arriving 15 minutes late, but that's okay, you are going to have to wait two hours before he can be seen anyway, getting home around 7:00.
13. Meals, baths, bed........

I guess I'm trying to be a little funny, but that is pretty close to the truth! No I don't want pity, I just want someone to recognize that what I do is difficult. No, I don't lay at home every day in front of the television. There are about a million more things I could add in there, and it varies each day. Sometimes I have to fit a appointment in for myself or for my oldest son as well. Some days I have meetings that I like to go to, some days the phone rings non-stop. It varies!! God bless all the parents who are out there quietly taking care of their children and fighting for them in a million different ways! We'll go into the fighting part in another blog! They are worth every minute! :)

Monday, February 14, 2011

My prayer for my children...

Please bless my children, keep them safe,
give them health and happiness.
Give the other children understanding,
and give them a few true friends.
Give their teachers wisdom,
and let them be kind.
Heal them lord,
but if that is not in your will;
Give me the strength and patience I need,
Let me be their advocate.
Help me to stand up to those who think they know more about my children,
when they really don't have a clue.
Most of all dear Lord,
let them realize how special they are.
Special not because of their disabilities,
but because you created them,
with a purpose.
Let them realize their gifts,
but most of all;
Give them happiness!

Saturday, January 29, 2011

Join the Blog Hop Fun!!