Just feeling a little overwhelmed tonight, (Update Pg 3 7/3/08)

[khomer504]

Also, Karen, have you ever seen this poem?

WELCOME TO HOLLAND

by Emily Perl Kingsley

"I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome To Holland".

"Holland?!?" you say, "What do you mean "Holland"??? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy"

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around…and you begin to notice that Holland has windmills...Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes that's where I was supposed to go. That's what I had planned".

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very significant loss.

But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland."

No, I have never seen that before, and I think it touched me deeper than anything else has these past couple weeks. Thank you, I really needed that. And that's exactly what I'm doing... looking for my new guidebooks, and learning my way around.

Karen

 

[pcparamedics01]

School systems are handing the label out like candy

You are sooo right about that!!!! They love to pull the Autism card!!!!

 

[khomer504]

School systems are handing the label out like candy

You are sooo right about that!!!! They love to pull the Autism card!!!!

Exactly! I did decide to request that Andy have a medical diagnostic evaluation... but I'm concerned that someone is going to meet him for 1 hour out of his life and slap him with a diagnosis... without taking a really thorough and critical look at what is going on with him. Working in healthcare, I'm all too familiar with how easy it is to be lumped into convenient groups.

On the other hand my OT warned me of this today too, but she offerred the comfort that at the very least an autism diagnosis guarantees access to so many more services than something less widely accepted, like a sensory processing dysfunction.

Karen

 

[jodifla]

Exactly! I did decide to request that Andy have a medical diagnostic evaluation... but I'm concerned that someone is going to meet him for 1 hour out of his life and slap him with a diagnosis... without taking a really thorough and critical look at what is going on with him. Working in healthcare, I'm all too familiar with how easy it is to be lumped into convenient groups.

On the other hand my OT warned me of this today too, but she offerred the comfort that at the very least an autism diagnosis guarantees access to so many more services than something less widely accepted, like a sensory processing dysfunction.

Karen

That's why you want to make sure the diagnosis is a good one. If I have breast cancer, I don't want to be treated for Parkinson's disease and hope the treatment does me some good.

I have a strong opinion (that some certainly disagree with) but I feel that no parent should be forced to get an inaccurate label just to get treatment. Children are entitled to get services for what they need help with, but schools will try to push you into programs that they already have set up.

From reading your first post, if feels like your DS's main issue is language- oriented. In that case, he really doesn't need a lot of the treatment for autistic children...he needs language treatement targeted to his needs (again, IMO).

Take ABA, which is a standard therapy for autistic kids. I was told that ABA would be the worst choice possible for my son by the university researchers, and to keep my child far away from it. It was likely to make him much worse, not better.

 

[belle&beast]

Exactly! I did decide to request that Andy have a medical diagnostic evaluation... but I'm concerned that someone is going to meet him for 1 hour out of his life and slap him with a diagnosis... without taking a really thorough and critical look at what is going on with him. Working in healthcare, I'm all too familiar with how easy it is to be lumped into convenient groups.

On the other hand my OT warned me of this today too, but she offerred the comfort that at the very least an autism diagnosis guarantees access to so many more services than something less widely accepted, like a sensory processing dysfunction.

Karen

Hi Karen.
I am an SLP with 10 years experience. I have worked for the past 3 years in public preschool previously worked with infants and toddlers. In our program we do not put much stock in diagnosis until kids are older. We very often define kids as having a "developmental delay" even if they appear to be on the spectrum. In my state DD label lasts until a child is 5, and at that time we reevaluate to determine the eligibility area. We feel that it is an appropriate label for kids that are still growing and changing and it does allow them to receive the necessary services. You will be amazed to see the changes that will occur in your child over time. If you have any specific questions, feel free to send me a PM.

 

[Nik's Mom]

Boy, can I relate to the op! I am the Mom of 2 autistic sons (5 and 8 years old). I will never forget the first time someone suggested autism. I cried hysterically at work. I still remember when one of my co-workers heard me crying and she went flying into my office. Keep in mind that she has terrible arthritis in both knees and can barely walk. She sat ther and held me until I calmed down.

Both of my sons have learned to speak through the help of speech therapy. They receive O.T. to help with sensory issues. I have cried buckets through our journey. But the good news is that you will come to terms with what ever your child is eventually diagnosed with. There will be times when you will cry buckets again, maybe years later. It seems to come in waves. Just try to hang in there. Work on getting a diagnosis first, then you can work on accepting it.

I know this is so hard for you. Just know that there are so many of us out there going through the same thing. You are not alone!

 

[Val]

Tweedlemom, you beat me to it....Welcome to Holland kinda sums all of this up. I am the mother of 4 kids- ages 10 to 20. I am a research behavioral neuroscientist and should "know" about stuff- but I was completely unprepared to deal with my youngest DD10, who is 'hearing impaired', or hard of hearing, as we prefer to say!

First- you are normal. ANY mom feels overwhelmed and has so many fears about her ability to raise her child. A mom of a kid with special needs- and I mean special needs, not a label- has even more fears! Thank you for feeling comfortable enough with this board and showing the bravery needed to tell us how you were feeling. We all could have written these very words about our feelings of incompetency and fear.

What is the best way to cope? Find a support group for YOU! A list serve (there may be several out there for parents of children who have similar diagnoses to yours) or a local group can really be critical....share, get ideas, find comfort. I know that the listenup! listserve really helps me deal with my DD's hearing loss. It is so comforting to read about kids who are going on in school, their achievements, etc.....gives me hope for my child. And, I can empathize with the other mom's frustrations and setbacks, and then I know that if they can handle it, so can I. Second, don't be afraid to hope and dream....don't put limits on your kid. He may not make it to Italy, but Holland IS a great place! Great painters may have come from Italy, but I remember a few "good ones" were also Dutch! You get what you expect from your kids-so hope for greatness and wonder and it is bound to happen. Finally, learn to ignore all those "advice givers" (well, not us!)....everybody will tell you what you SHOULD be doing, but you are the one who knows your child and knows what your family can/can not do....learning to ignore is an artform- I guess we moms of special needs kids are the Rembrandts of ignoring! Finally, remember that you have a terrific, loving, kind child- the world, especially your world, would be a much worse place without him. His contributions to the world may be not what you expected- but just look at all he has taught you already! So much, and he's only little....think how wise you will be by the time he is 18.

God bless you, hugs, and remember that you are NOT alone. Many have travelled down this path, some are in the middle of the trip, and others like yourself are just beginning. But along this path you will find kind neighbors, helpful Samaritans and beauty and goodness. I actually am starting to enjoy Holland....it might, in some ways, even be prettier than Italy. Still wouldn't mind a side trip to Italy, just to say I have been there and done that. But, Holland is really growing on me....It is more unique, more cherished, and forces me to stop and smell the those proverbial flowers. Glad I made the trip afterall. Give that little one a great big hug from my family to yours....and my DD is signing "tell him I say I love you!"......see, he's impacted some one else already!

 

[carrie6466]

Karen,
I just have to say hang in there. You'll be able to do what you need to, when you need to.

I never thought DD would start to talk. I used to question the ped at every visit. She was about 3 1/2 when she finally started. She still has a lot of trouble with it, but she's going to be getting speech now. I just wish I had know that I could have done this with her much earlier. I thought they had to be in school already in order to have them get anything through the school district. I just found out this year that wasn't the case, which was when I and the preschool teacher requested evals be done.

It sounds like your son is getting what he needs and you are doing a great job of getting it all done for him! Hang in there, I think we all have days like that

 

[LindaBabe]

Tweedlemom, you beat me to it....Welcome to Holland kinda sums all of this up. I am the mother of 4 kids- ages 10 to 20. I am a research behavioral neuroscientist and should "know" about stuff- but I was completely unprepared to deal with my youngest DD10, who is 'hearing impaired', or hard of hearing, as we prefer to say!

First- you are normal. ANY mom feels overwhelmed and has so many fears about her ability to raise her child. A mom of a kid with special needs- and I mean special needs, not a label- has even more fears! Thank you for feeling comfortable enough with this board and showing the bravery needed to tell us how you were feeling. We all could have written these very words about our feelings of incompetency and fear.

What is the best way to cope? Find a support group for YOU! A list serve (there may be several out there for parents of children who have similar diagnoses to yours) or a local group can really be critical....share, get ideas, find comfort. I know that the listenup! listserve really helps me deal with my DD's hearing loss. It is so comforting to read about kids who are going on in school, their achievements, etc.....gives me hope for my child. And, I can empathize with the other mom's frustrations and setbacks, and then I know that if they can handle it, so can I. Second, don't be afraid to hope and dream....don't put limits on your kid. He may not make it to Italy, but Holland IS a great place! Great painters may have come from Italy, but I remember a few "good ones" were also Dutch! You get what you expect from your kids-so hope for greatness and wonder and it is bound to happen. Finally, learn to ignore all those "advice givers" (well, not us!)....everybody will tell you what you SHOULD be doing, but you are the one who knows your child and knows what your family can/can not do....learning to ignore is an artform- I guess we moms of special needs kids are the Rembrandts of ignoring! Finally, remember that you have a terrific, loving, kind child- the world, especially your world, would be a much worse place without him. His contributions to the world may be not what you expected- but just look at all he has taught you already! So much, and he's only little....think how wise you will be by the time he is 18.

God bless you, hugs, and remember that you are NOT alone. Many have travelled down this path, some are in the middle of the trip, and others like yourself are just beginning. But along this path you will find kind neighbors, helpful Samaritans and beauty and goodness. I actually am starting to enjoy Holland....it might, in some ways, even be prettier than Italy. Still wouldn't mind a side trip to Italy, just to say I have been there and done that. But, Holland is really growing on me....It is more unique, more cherished, and forces me to stop and smell the those proverbial flowers. Glad I made the trip afterall. Give that little one a great big hug from my family to yours....and my DD is signing "tell him I say I love you!"......see, he's impacted some one else already!

Val, THAT was a beautiful post. Thank you so much for writing it.

 

[Val]

LindaBabe....you all caught me on a GOOD day. We had my kids change to public school from parochial school this year- my DD10 with hearing loss was really struggling with out special ed services, my DS12 had a bad bully situation, and my DD16 had already decided to attend public high school. Was a hard decision.....skip ahead to this week.

My DD10 with hearing loss made the A honor roll. She has to work extra hard, but by accepting the spec ed services she is getting the help she needs to hear- and academic success comes with it! My DS12 is also doing well in school now- A/B honor roll. He just started physical therapy for an old arm injury (bad cut and break when he was 3) and the PT was optimistic that the injury won't cut into his "football career" (funny to hear that for a 12 year old- since when is Pop Warner a career, and no, he won't be going to Disney!)...

After reading the posts, I started to reflect on the people who work with my kids...my DD10's primary classroom teacher is one of the top 30 teachers in the state; her science teacher won an outstanding teacher grant; her school is a Blue Ribbon school and I can't say enough good things about her teacher-for-the-deaf, her speech therapist and the school psychologist. My DS's teachers are part of an award winning junior high team. My DD10 and DD16 (and my DD20's) orchestra teacher just won outstanding music teacher for the state. DD16 won regionals for the speech team, and has been recommended for trying out of nationals- all because of the influence of her outstanding speech and drama teacher....my DD 20 is exceling in her art major at school because of the great art teachers she had. I am SO blessed to have so many fine teachers in my children's lives. I am not sure how our little town cultivated such a fine public school teaching staff.

It was so hard to accept "help" and realize DD10 needed services. Now, I realize all the kind and loving teachers, therapists and doctors that are out there. Sure, we have seen some crappy ones (I HATE geneticists and some ENTs)...but we are so blessed. I think learning to accept help and learning that you can't do it all is the first step.....and then learning to accept comfort and small steps is the next. We must learn to like the flowers in Holland, even if they aren't the museums and landmarks we expected in Italy....when we learn to accept and not sweat the small stuff we learn to embrace life and life it like our child does- full of grace, with exhuberance and joy, and always knowing that our tomorrow will be fulfilling, even if we don't know what will fill it!

Now, catch me on a bad day and I am the WORST pessimist......Eeyore would be an eternal optimist next to me. But, as the principal at my DD10's school says at the end of announcements each day,"Today is a GREAT day to be a Timberwolf, because at Fox Creek Elementary, each day is the start of the rest of our lives. Carpe Diem!"...oh, and Mr. R is one heck of a principal, too!

We all will survive, and our kids will too- in SPITE of what we do to them! Best of all, our little ones who struggle against adversities will teach US how to live.....maybe that is why they were sent to us- we needed a lesson in living life to the fullest.

 

[brettgirl]

Amen Val!!!!

 

[khomer504]

Hi everyone! I posted this thread many months ago, and have been on quite the journey since then. My little guy was diagnosed with Autism just a couple weeks ago. By the time we got to the diagnostic appointment it wasn't a surprise, we knew what we were expecting.

I really just wanted to come back here and thank everyone. This was the first place I posted about anything having to do with my little guys problems, and you all really inspired me to look further. Since then we have joined several local organizations, and are on our way to having a strong support network. Andy is still almost completely non-verbal, but doing great with PECs.

Also, I can't tell you how many times I've read "Welcome to Holland" since it was first posted here, and I still cry every single time. Heck, I don't even have to read it, just thinking about it right now tears me up. That poem alone has meant the world to me these last several months.

Now, we're 1 month away from our first big family trip to Disney, and I can't wait to see how it works out for us. Thanks again to everyone... sorry I was MIA for so long.

Karen

 

[LuvsTinker]

I'm glad you've found the support you'll need to help you through this big puzzle.

Best wishes for a very happy WDW trip

 

[tweedlemom]

So glad you checked back in! Glad the poem has been helpful. You will be amazed at how well your child responds to WDW. Enjoy the trip and make some wonderful memories together!

 

[MandM-Mom]

I had read this thread months back and was glad to see the update, believe me I have had those moments too And I am sure I will have more of them Have fun planning your trip, I am sure it will be magical.