Children with Special Needs

"A Different Double Take"


By: Lisa Wootan

Registry Form for MOM's with Children with Special Needs

Hello MOMs,

I hope this finds you all enjoying summer weather! It has finally stopped raining. As many of you know from my introduction for publicity chair, one of my sons is autistic. After learning this, Myriam suggested a segment in the newsletter to gather us mothers of multiples who share the situation of having a different outlook and experience with raising twins. As you know, it can change our discussion of typical twin topics in many ways, such as separation in schools, individuals versus unit, comparisions between children, exclusion, treatments, finances and emotional/physical stress. It can influence the club as well. I have done a presentation about autism at our meeting to help others understand more, as it is becoming such a common diagnosis. This helps the mom explain some of Ian's differences to the children when they encounter him at our club functions, all of which he attends! This may also help them interact with a student in their class.

If sharing information and ideas about personal experiences may appeal to a member in your club, please have them email me (Lwootan@nycap.rr.com). At this time, I'm not sure if this will be an open forum in the newsletter or pen pal system or question and answer. There is a National Special Needs Support Services Coordinator (Judith Zobele can be reached at MOTCSpecialNeeds@nomotc.org) who does set up pen pals. I personally have not used this, but getting to share with and know other NYS moms I could talk to and see at the state meeting sounds good to me. We'll see what the response is. I hope to hear from you.

Thank you,

Lisa

(Printed in the July/August 2004 issue of the Presidential Papers)

Hello MOMS,

I hope you and your families are enjoying spring. For us it is the start of crazy baseball season. Sometimes the boys have games at the same time in different places, but I am just grateful that our town has a challengers league so Ian gets the chance to play.

I wanted to thank Jean-Marie from DCMOMC for the special needs workshop at this past meeting. Although the attendance was small, it was really enjoyable to discuss things with people who could help provide answers and to learn from others situations. She gave me information about The Center for Autism and Related Disabilites at University at Albany. I graduated from that school and live 10 minutes away. Had I heard of it before or been informed from our school district? NO. She also gave out information on a Parent to Parent of NYS group (yes here in Albany, never heard of either) that covers literally A to Z of diseases and illnesses. If you are interested in web addresses, please email me and I'll pass them along. She also provided a list of books dealing with being a sibling of a special needs child. The book ranges are for from young sibs to parents. I look forward to reading them and finding some for Jake and Ellie. The boys are close to 10 and we could be dealing with more embarrassment and things soon, and Ellie is 3 and copying things Ian does. It's not necessarily bad behvior but can be strange coming from her. A book to read with her about why Ian behaves as he does could help to prevent some imitation. I ask that you make you club members aware that there are people who might be able to give advice, information or help if they need it. Feel free to email me.

Having contact can help so much. This week I was feeling like a complete failure at everything. Pressure from things expected of me, piled on top of some bad episodes with the kids led me to sit on the floor in the corner of the kitchen with my head in my hands while I cried. Luckily it was very brief. It really helped when I talked to my best friend from the club and she said she's been down in the dumps this week too. We decided it was allergies and we needed chocolate. I do believe hormones may have been a culprit as well. Sometimes having someone listen and sympathize is all you need. Other times that person may suggest you need professional help. Remember one of our main functions is SUPPORT.

Twincerely,

Lisa

(Printed in the May/June 2005 issue of the Presidential Papers)

Hello MOMs,

Sorry I didn't get anything in the last issue, but as you all know sometimes you don't get accomplished what you intend to! It has been a very busy fall with soccer, scouts, viola, clarinet, ballet and church in addition to school and the never ending housework. As I talk to more people, I am convinced that special needs information will become a valuable resource in our or­ganization. We now have 4 autism spectrum boys in our little club of +/- 12 active members. I was encouraged by receiving several great emails, one of which was from a mother who is not a member of a club but saw the article on the state website. I apologize to those who I have not yet responded to - I am very slow with the return email. At the midterm meeting it was de­cided to reprint an information survey on special needs that went out last year, but we received little response to. State Reps/ Presidents please make this available at your meetings or in your newsletter. I've also enclosed a copy of a letter from Dear Abby that I read at midtenn. Please share it with anyone you think has interest. See you all in April! Lisa

WELCOME TO HOLLAND
From: Emily Pearl Kingsley's letter in "Dear Abby", 10/29/88

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 guidebooks and make 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 out 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 awhile and your catch your breath, you look around and 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 bragging about what a wonder­ful time they had there. And for the rest of your life you say, Yes, that's where I was supposed to go. That's what I had planned."

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

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

(Printed in the November/December 2005 issue of the Presidential Papers)

Hi MOMS-

I am ready for spring! We are very excited to be going to Orlando on winter break. We have never been before. I am hoping the drive goes well. Luckily Ian really likes to ride in the car and enjoys maps. The kids have been pouring over the pamphlets for Disney and Seaworld. We have plans to get the fast pass and someone shared some­thing important that I'll pass on to you - Special Needs children don't have to wait in line! If you go to guest services you get some kind of pass that is good for the whole group. That will help Ian enjoy things more. He's not much for big rides and noise, so getting in quickly to the things he does want to do will be great. He's already talked about going on some Bugs Life ride thing, wearing the "headphones Grandpa gave for Christmas" (shooters ear protectors). I don't care ifhe looks a little different, if it helps him enjoy himself. Maybe he'll look like he's really into music!

I guess the point is to fmd what works for you and go with it. I used to worry more about what people thought when we were out in public. Granted, things have gotten easier as he's gotten older, but of course with time you fmd a way to make things work for your family - whether it has to do with special needs or twins or both! I hope to see you all at Love the Flicks. We will be transitioning to middle school next year and it would be wonderful to chat with someone who has experienced that already.

See you soon, Lisa

(Printed in the March/April 2006 issue of the Presidential Papers)

Hello MOM's

I hope this spring has found you all getting active again. My kids watch a lot of TV, especially Ian, and I try to get us out more in the nice weather. He enjoys wearing his pedometer and recording the numbers each day. He's even laughed with me when I've caught him "cheating" by jumping up and down watching it count up. We had a great vacation to Disney and his pedometer read over 22K steps one day. I believe that's over 12 miles! He is also part of a challenger’s baseball team that has been very good, as his twin brother is part of a league that Ian could not participate in. I think helping him to stay active is important because he loves "junk" food (all food actually) and that may result in having to have his weight monitored sometime in his life. We as a nation are starting to fight the obesity trend and finding children learn eating and exercise habits that they can keep with them their whole lives. This may become especially difficult with special needs children who are often given rewards of foods or movie time as motivational tools.

I think of the convention we just had and it reminds me of the amazing progress Ian has made. He didn't call me Mommy until he was 4 1/2 years old or say much else, and there he was in his Webelos uniform, leading us all in the pledge of allegiance! I won't say it's been easy but I am grateful to see what he has become, and to give any of you with little special ones hope that you may see progress as you look back 6 months to a year at a time.

I am also asking for your help. With my new duties as VP, I would like to offer the special needs coordinator appointment to another member who would like to share her experiences, thoughts and advice. State Reps - please bring this to the attention of any mothers in your club with a special needs child. So far all it has entailed is this article and responding to a few emails. I imagine it could be customized by whomever fills it. Please contact me ASAP.

Thank you. Sincerely, Lisa

(Printed in the May/June 2006 issue of the Presidential Papers)

Hello MOMs,

Here we are wrapping up our last year in elementary school! They are doing lots of fun things like field trips to Boston and 6 Flaggs New England. Luckilly they are excited about moving up to the Middle School. I am worried about it for Ian. He's going to be in a more academically challenging class, and also bullying can get pretty bad in these years. I've talked with a mom who's son is going into 8th grade in the class Ian will be in and she had nothing but good reports, with no problems at the school. I felt much better after that. This will be the first time ever that Jake and Ian will be at the same school. I've requested that they're in the same house but on different teams. That will make things easier on me, and Ian shouldn't be integrated into any of Jake's classes. I talked with Jake about this, to see if he'd be ok with seeing Ian around at school. Would he be bothered if he heard things, or would he be able to say "he's autistic, get over it". I'm worried both ways - he might try to be his brothers keeper or he might be embarrassed and say nothing. I guess there's no point in worrying about what if's, just see what happens.

Thinking about Jake being responsible for Ian reminds me of a segment I saw on Nightline. It talked with siblings of autistic kids. An older woman said there were times growing up she wished her brother wasn't around, and she always went to friends houses instead of the other way around so she didn't have to explain her brother. She also mentioned that parents "lie" to their kids and they believe them until their 30's when they realize that they will become responsible for their sibling. It got me thinking about how important it is to have things established for your special needs childs care. While that woman had a pretty negative attitude about things, there was a remarkable 12 year old boy who's brother was 18 months younger. He had amazing love and interaction with his brother. The tv crew followed him around school and he just kept explaining "They're doing a story on autism and my brother has it", "No for the millionth time,you can't get it", "If you're autistic you don't really talk to much" and things like that. He already was taking responsiblilty for his brother and understood he was in his future, and was basically happy to do it. It made me think if a twin sibling would feel automatically like this, possibly with the feeling like this boy had of why was it him instead of me. I haven't talked with Jake specifically about this, but in the past he has gotten alittle emotional when we've talked about Ian and his different abilities. A topic for future converstation as he gets older, I suppose.

I am still in need of your help. I need someone to take a turn as the Special Needs Coordinator. Let me know ASAP if you can do it:) This was sent to me, so I wanted to be sure to print it. It is a "staple" like "Welcome to Holland" for Moms with special needs kids. Twincerely, Lisa

Thoughts of a Mom

Many of you, I have never met face to face but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores. I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted or wished to be. Your words ring experience. Experiences you can recall with your very heart and soul. You are compassionate beyond the expectations of this world. You aremy "sisters".

Yes, you and I, my friend, are "sisters" in a sorority. A very elite sorority. We are special. Just like any other sorority, we were CHOSEN to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership to no avail.

We were initiated in neurologist's offices, NICU units, obstetrician's offices, in emergency rooms and even during ultrasounds. We were initiated with just a somber telephone call, a consultation, routine blood tests, x-rays or during heart surgeries.

All of us have one thing in common. There was one day things were fine. We were pregnant, had just given birth or even playing with our toddlers. Yes, for one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.

We are united, us sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemo. Some need respirators and ventilators. Some are unable to talk or walk. Some eat through a feeding tube. Some live in a different world. We do not discriminate against those mothers who have children that are not as "special" as our own child. We have mutual respect and empathy for all of the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "THE" specialists in the field. We know the best neurologists in the field. We know the Children's Hospital phone number by heart. We all know the wonder drugs and the best treatments. We know all of the secondary tests by heart and hold our breath while our children are tested for them. Without formal education, we could become Board Certified in Neurology, Endocrinology and Psychiatry.

We have taken on our insurance companies and school boards to get what our children need to survive and flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with Autism, Cerebral Palsy and Down Syndrome.

We have labored to prove to insurance companies the medical necessity in treatments; we have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us in line.

We have tolerated insane suggestions and home remedies fromwell-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our nearest and dearest friends can't understand what it is like to be in our "sorority" and don't even want to try.

We have our own personal copies of Emily Pearl Kingsley's "A Trip to Holland" and Erma Bombeck's "The Special Mother". We keep them by our bedside during our toughest hours.

We have coped with the holidays. We have found ways to get our physically handicapped children to the neighbor's front door on Halloween and we have found ways to help our deaf children say "Trick or Treat".

We have accepted that our children with sensory issues will never wear velvet or lace on Christmas. We have pureed turkey on Thanksgiving and we have bought white chocolate bunnies for Easter. All the while, we have tried to create a festive atmosphere for the rest of our family.

We have gotten up every morning since our journey began and wondered how we would make it through another day and gone to bed every night not quite sure how we did it.

We have mourned the fact that we never got to relax and sip red wine in Italy. We have mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. We have mourned because we left for the airport without most of the things we needed most for the trip.

But at last sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all they will achieve in life knows no bounds. We dream of our kids scoring touchdowns, extra points and hitting home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas Carols. We see their palettes smeared with watercolors and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, ever stop believing in all they will accomplish as they pass through this world.

So in the meantime, my sisters, the most important thing we do is hold tight to their little hands and together, we special mothers with our special children, REACH FOR THE STARS...

(Printed in the July/August & September/October 2006 issues of the Presidential Papers)


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