Free promo code give away 9-9-11

I have a promo code for Alphabet tracer by EllieSoft you can check it out on their website.

http://www.elliesoft.co.uk/

To have a chance to win this code just leave a comment on the app review page on how apps have made a difference to your child/family member and one lucky winner will be chosen at random tomorrow and the winner will be announced tomorrow evening 9/9/11 on my blog.

Those writing comments will have to check the blog  tomorrow evening after 6:00 pm EST to see if their name is listed as the winner and then send me an email so I can send them their code.

The codes have an expiration date so hurry before time runs out.

Check back often as I have several more codes for various apps and you never know when I will be giving another one away.

My Vision for Trisha written 2004

My Vision for Trisha

My vision…..  Not necessarily in order as written….

For her to be able to read, so that she may enjoy learning new things and just for the simple pleasure that reading can bring.

1. for her to be able to write, so that she will be able to express her thoughts and ideas and to be able to write letters to her family and friends.
2. for her to be able to count and use money so that she can buy things and know how much they cost and how much she has to pay and how much change she is supposed to get back.
3. for her to be included in life not just be an observer.
4. for her to be taught life skills along with Academics so that she can function in her life and not be so dependant on others to care for her.
5. For her to develop different interests and not just sit in front of a TV all the time.
6. for her to have friends that will do things with her and who she enjoys spending time with and who will protect her when needed but allow her to be as independent as possible.
7. for her to be respected, treated with dignity and fairness.
8. for people to see the capabilities she might have instead of what she can’t do.

I see Trisha maybe living in a group home and possibly volunteering or working at a job she enjoys.  Having friends to spend time with and maybe even a few hobbies to enjoy.  I see her being able to go shopping and even maybe entertaining a few friends.  I see her being able to grocery shop and cook simple meals or elaborate depending on her taste and abilities.  I see for my daughter the same things other people see for their children.  To have a happy and productive life with the opportunities to grow and learn, make friends, hold down a job, to be respected and treated with dignity, to love and be loved.  I see for my daughter the same things you see for yours, the only difference is most people see what she isn’t….. I see what she could be!

What I don’t see for my daughter is not receiving a proper education, not being challenged to do her very best, not having faith in her, not giving her every opportunity to succeed or to fail.  What I don’t see is holding her back because she is different and because she doesn’t talk like we do, or she doesn’t think like we do or that because no one seems to  know what to do with her, she is left to fall through the cracks.

Will she become president some day?  Probably not, but then most of our children won’t become president.  Should we dream big dreams for her?  Most definitely!  It never hurts to dream, and if people hadn’t dreamed in the past, where would we be today?  Do I have high expectations for Trisha?  You betcha!!!!  If Trisha knows that I believe in her and believe that she can do whatever she sets her mind to do, there is no limitations to her capabilities, but if I go around saying that’s too hard, that she can’t do this or she can’t do that, then she will mostly likely not give it her best because she will think she can’t do it.  Will I be disappointed if she doesn’t always succeed, not at all, I will be very proud that she tried and did her best.  Succeeding is not always about being the best, sometimes it’s about just trying  your best.  So if you try your very best then you have succeeded and if you have succeeded there is no failure.  So it’s all about dreaming, having expectations and  being given the opportunity to try even in the face of obstacles.

follow up coming soon…

What it’s like to be me

What is it like to be me you ask?  Well I’ll tell you, it isn’t easy being me.  You should try spending a day where everything you see is in waves and out of focus but wait that isn’t the worst of it, now, they gave me glasses!  I really don’t like these glasses you see, but everyone tells me how beautiful they look on me and I have to wonder, if they look so good on me, they why isn’t everyone wearing them?  So, now I have my new glasses and people keep asking me what do you see?  I’m not sure what I see, because I’m not sure what I didn’t see.  Now add the fact that my hearing is impaired, not broken, just impaired, that means I can hear some sounds but not others and that really makes it hard to know what everyone is saying so…..Yep, you guessed it. I have been awarded a pair of hearing aids; they are called aids because they are supposed to help me to hear well.  Do I like this little thing that sticks in my ears?  NO, I do not!  Was I asked if I wanted these things stuck in my ears?  NO! I was not.  Do I have these little things stuck in my ears?  YES I do.  But….I pull them out every chance I get, but somehow my mom knows and in they go again. I just got my hearing aids and already people want to know what I hear.  I would love to tell them but  I don’t know what I hear because just like with the glasses  I don’t know what I wasn’t hearing.

One of the hardest things about being me I think is that people ask me things all the time and because I don’t have the words to answer they just assume I don’t know.   I wish people would understand that just because I can’t always answer in the way you want, does not mean that I am incapable of learning; it just means you need to find a way that I can communicate with you.  It would really be nice if you watched me and saw for yourself my preferred mode of communication and then maybe tried using that instead of trying to make me u se something  that I am not comfortable with just so it would make it easier on you, because then it makes it a lot harder on me.  People are always trying to make me adapt to their way of being, just once in awhile it sure would be nice if those people would learn to adapt to my way of being.  Do you know how much harder I have to work on things that most people take for granted every day?   But that doesn’t seem to be enough, No,  I have to learn to conform, I have to learn to fit in,  I have to be appropriate even if it means that is a lot more work on me.  How many age appropriate kids do you know that has to learn a different way to see, hear, communicate, eat and play all while trying to get an education?  I bet if you were to walk in my shoes just one day, you would see just how hard it is to be me.  Oh, but wait!  I forgot!  There’s more you see, because there is this thing called a syndrome, Down syndrome to be exact, which is what I have.  What is Down syndrome you ask?  Well it’s this funny little extra chromosome that causes so much havoc.

You would think by having an extra chromosome that it would make things better, HA! WRONG!  That extra chromosome causes some major upsets, like, it messes with the way my body grows and looks, it makes it harder for me to learn the same things that you do, but, it doesn’t stop me from learning. I just have to find different ways to learn and that is where the problems start.  Because as we all know, being different is not always acceptable.  So, instead of finding ways to help me learn, I am forced to learn like everyone else and that is so slow going that I’m afraid they will give up on me long before they see just how much I really can learn.  My mom understands me better than anyone and she is always trying to find ways to help me learn.  But it’s a long hard struggle and yet, I know she will never give up on me, you see, she believes in me!

So the next time my mom is asking for your help, before you say no, I ask one favor.  Please try being me for a day and then give your answer.  Try wearing glasses  that distorts your vision, put ear plugs in your ears and try to listen to what is going on around you, put cotton in your mouth and try to talk, have someone talk to you in a language you don’t know and see  what it feels like when they keep trying to get you to answer and most of all, try sitting at a table in a room (not actually sitting with them but just in the same room) full of lawyers and doctors and then let me know how much you learned from them because you were included in what is believed to be the least restrictive environment.  Now while you are being me, try making new friends and then tell me again what it is you want me to conform to?  No, it isn’t easy being me, BUT, it doesn’t have to be this hard.  Maybe we can compromise, I will try to fit in with you, could you not try to fit in with me?

June 2, 2005

Update to what it’s like to be me…

You know how hard it is for me to use my words well now I know why.  I was unceremoniously given the added label of severe apraxia.  Now you would think that my cup was full but oh no, there is one more label although some professionals seem to be in denial about it but that is the label of PDD which is the umbrella of which autism falls under.  It’s funny how a psyche report states that she has characteristics of PDD and it would be appropriate to continue the label for Autism if it was necessary for educational benefits.  And they say I have a hard time learning.  Well they can’t even agree on what is or isn’t Autism.  It appears that PDD is not a diagnosis in and of it self and a lot of professionals use that when they don’t really know or understand just why I am the way I am but my mom goes by her love and knowledge of me and she knows that whatever they chose to call it isn’t as important as what is done to help me.   My mom says if we wait until all the professionals come to an agreement of what is or isn’t autism then we would never get anywhere.  Instead my mom goes by what she sees in me and then does research based on my individual needs and works from there.  Labels are more important to the professionals than they are to the family.

My mom says what is more important is that we remember who we are here for and what is best for me.  A label/title for a professional gets them more money, a label/title for a special needs person gets them harder work.  You know how you see all those initials after a professional’s name?  That means something to them well all those initials after my name means something to me too, It means I have to work harder than the typical person, I have to face discrimination while the very people who discriminate against me are sometime those who are supposed to be helping me, it means that before anyone ever meets me in person they have preconceive ideas of  what they think I can or can’t do and a lot of times they end up just doing the bare minimum because they think I am a waste of their time.  But what they don’t know is that all those initials behind my name also stand for bravery, strength, stamina, determination and will power because that is what it takes every hour of every day for me to survive.  How many people do you know with initials behind their names that have to go through that on a non-stop basis day in and day out?

Now you tell me do you think I am wasting your time because if so, then you need to move on, this team needs people who have faith and believe in me and think that I am worth their efforts.  I know I am worth it, my mom knows I am worth it but I have to ask do you know that I am worth it or are you just sitting there going through the motions.  That isn’t good enough and I don’t believe if it was the other way around that would be want you would want on your team is it?   It is a privilege for you to be on this team not your right.  If the team isn’t working we can always change team members as often as it takes until we have the right team in place that will work for me and what my needs require.  Don’t ever forget what the I in IEP means. I am not the same as everyone else and what works for one person might not work for me, so trying to make me fit into a mold that would be easier for you but much, much harder for me is not the way to work.

Let me ask you something, if you have a person who has no legs would you force that person to try and walk just like everyone else or would you make adaptations and modifications to meet that persons unique needs? You’d make adaptations and modifications without a second thought well why can’t you do that for me?

 

Sincerely,

Trisha

Hurricane Irene 2011 and Trisha

Irene decided to pay us a visit on Saturday, August 27th, 2011.  She started out easy at first with just lite to medium winds and we thought oh ok this isn’t going to be too bad.  Oh I should have never thought that.  While Irene was not as bad as Isabel, she was right up there with her.  It wasn’t long before the wind picked up even more and the rains came lite at first but progressively stronger as the time wore on.

Our power flickered on and off during the morning hours and finally around 2pm went off completely.  Trisha came out of her room and signed broke referring to her TV.  I tried to explain that the power was off and that we had to wait for it to come back on.   She did not understand this so I decided to go with her thinking and said yes it’s broke and we have to wait for the power to be fixed.  This seem to make more sense to her.  She was a little upset that there was no TV but settled down to using her Ipad instead.  She did set up residence in the living room right smack in the middle of the room in the path where you had to walk and nothing would budge her.  She set up a place for her to use her ipad and pulled a large plastic bin out to use for a small table.  She was comfortable while we had to climb over her to get anywhere in the trailer. 

I have to say, I love the ipad2 if for no other reason than it’s battery is a long lasting one.  She was content to read her story books, use her communication app, coloring apps and a few game apps until……

The iPad battery gave out.  Then she got upset.  We tried to explain to her that we couldn’t charge it and gave her ipod to her which she took but it didn’t appease her as much as we hoped.  Then her brother remembered he had an adapter for the cigarette lighter for his car so he “could” plug in the ipad and charge it back up.  It took several hours to recharge and by the time it was charged the ipod needed charging.  My son did this the whole time the power was out.  She also has an ipod shuffle that he needed to keep charged (she listens to this while going to sleep).  So between charging up ipads/pods and cell phones my son spent a lot of time in the car.  But it was well worth it to keep Trisha content and not having a meltdown.

Trisha would not sleep in her room with the power off so we got out the blow up air mattress  where she slept each night.  It was almost like having a sleep over as she would lay there “chatting” to me and giggling until she finally was able to go to sleep.  She adjusted pretty well for the most part with a small outburst here and there but much better than she did with hurricane Isabel. 

What did we take away from this experience?  Well, first, we learned to prepare for the worst and pray for the best.  We learned having a car adapter is a must for charging up cell phones, ipad/pods, music players etc.  Having an ipad is a big plus especially if you have a special needs family member to help keep them occupied during the storm or with power outages. We also learned how to be creative and to make life as comfortable as possible when there is no power but most of all we learned that live does go on without power.

Most of all we learned to focus more on our family togetherness and be grateful that we survived and for being alive.  Power is a little thing compared to those who lost their lives in the storm.

Walk a mile…

The old saying walk a mile in my shoes before you judge goes both ways.   As a mom to a special needs teenager I have been doing my own research for the last 19 years and there are some days that I am just plain washed out.  I feel I can’t look at another resource or another article or another post without going insane.  That doesn’t usually last too long for me before I’m back to doing my searching and posting and what have you but I do at times get overwhelmed.  I guess what we have to remember  that each of us is different and may not handle things the same as you or I, and that is ok.  The sad part is that we tend to judge others by what we do and over the years I have come to see how unfair that can be sometimes.

There are times when my head feels like it’s going to explode if I read one more thing and when that happens I sometimes start to shut down and back away.  This actually is not because I am uncaring or selfish or rude but it’s my way of protecting myself so I can get my second wind and continue doing what I need for my daughter.  I am not any good to her or anyone else if I let myself become overwhelmed or I don’t take care of myself.  Generally it doesn’t take me long to get back on track and feel more refreshed and eager to do more research but that’s me, others may get back on track faster or slower depending on their needs.

Why is it that some people seem to be able to do it all and others are overwhelmed with what seems to be the little things?  I wish I had the answer but I don’t.  I guess it has something to do with the fact that we are all individuals and we all react in different ways.

There are times when I devour every single word I can find to the point my eyes feel like they are going to bulge out of their sockets and steam will shoot out of my ears and yet I keep on devouring every word until I just crash and then there are those times when I open up an article but just can’t bring myself to even really look at it and break down and that is when I know I am on overload.  Is my overload the same as everyone else most likely not and to be honest I never know when I have reached my overload limit until I’ve actually reached it.   Sometime the least little thing will set me off and other times it’s like I can handle anything.

The point of this long winded blog is that generally when we listen our bodies will let us know what we need to do to balance ourselves and even if others don’t like what we need to do, they are not living our lives even if they think it’s the same or if their life is harder or they do more or less.   Until you can actually walk in each others shoes (not shoes similar or bigger or smaller but exactly) then we really don’t know what makes other people do so much more or less but being parents of special needs people I hope we have learned to be a little more tolerant.

More importantly, I hope I have learned to be more tolerant.  I fight so hard for my daughter to be accepted for who and what she is, I need to extend that to others as well.    I do try…. I just don’t always succeed but I will keep on trying until I get it right. 

Carol

You ought to…

That is a phrase I hear quite often in the special needs world. So today I decided to take my first step into doing some of the “you ought to’s” that has been suggested starting today with my first real attempt at blogging.

A little bit about myself, I am mom to a beautiful special needs teenager with multiple disabilities and a grown son who helps me with his sister. Not sure how we would make it without her big brother being there for us all the time. He has given up so much just to help his mom and sister.

Our journey into the special needs world began 19 years ago in February of 1992. We knew almost immediately that Trish had down syndrome but it took longer to learn about her other disabilities that makes her such an unique individual.

The travel over the years has been like most journeys a mixture of straight easy roads, bumpy terrains, detours, and full of surprises and frustrations. It has been a learning experience for our whole family.

I’d like to sit here and pretend to be supermom and tell you how perfect I am as a special needs mom but that would be a fairytale indeed. For me there is no such thing as supermom. I’m “just a mom” who does the best I can and hopes to learn as we go since someone forgot to send the instruction manual with Trish when she was born.

I can’t even begin to count all the mistakes I have made over the years but at the same time I also can’t begin to count all the right things I did as well. Hopefully we learn from it all and continue to do the best we can.

I used to think wow that mom is so good she does so much more than I do, I have learned over the years it’s not always about how much you do but what you do that is important.   I’m still learning what to do even after 19  years.  What we did yesterday might not work today so then we try something else.  It’s always a work in progress.

I also used to think I shouldn’t feel frustrated or overwhelmed or tired or sad  but you know that is part of being a mom whether to a special needs or a typical child things happen and not all of us react in the same ways. That is ok. We are different after all.

There is a branch on our journey which for me is probably the hardest one to travel as it is the “special education” branch and can be a very tricky road to travel. Just when I think I figured out the directions things change and then I have to start over and find a new path. For me I relate special education to the fun house mirrors because often times what you see is not always what you get.

I could go on and on about our long road in special education but I think I will leave that to another time and instead I’d like to add my own branch and talk about some things we do with Trish that we hope will  help her after we are no longer here for her.

One thing I can tell you for sure is that I won’t know what my next blog will be about until I actually start blogging it. 

Carol