Happy spring!  The crocuses have bloomed and the tulips are well on their way...the sun feels so good and the longer days are a hopeful harbinger of summer.  With the change of seasons comes another Anchor Center graduation...always a bittersweet day for everyone.  This June we will have our largest graduating class ever, with approximately 13 students leaving for kindergarten in their neighborhood schools.

My child, Benjamin, graduated from Anchor Center in 2003 and began kindergarten the following fall.  This fall he will begin high school!  Today his new teacher observed his current classroom and spoke with me as well as his middle school teacher and his  teacher of the visually impaired.  He has a large IEP team. Some individuals will continue to work with him in high school, others will change.  He has a transition notebook that follows him year to year, with information all about Benjamin, from his communication system to an overview of his vision/hearing issues to what he likes to do at home!  We will visit the new classroom together in May and then again in August, a few days before the official start of high school.  I have the new teacher's e-mail and will be contacting her in mid August.  I am doing all I can to initiate a smooth and seamless transition for Benjamin into his new school.

We are forming a relationship with his new teacher.  It will still take time in the fall for both Benjamin and his team and me to feel completely comfortable together, for us to figure out how to best communicate with one another.  It is all about building trust.  And truly the hardest transition for us in the last 14 years was the transition from Anchor Center preschool to kindergarten in the public school system.  Middle school and high school have been much easier.   Much, much easier!  We have learned the school system and gotten to know many, many wonderful educators through the years and this has paved the way for a smooth transition every school year.  But it was all brand new when we left Anchor Center back in 2003.  That time can be scary and uncertain as we have no idea how our child will be accepted, who the new teachers will be, how to navigate a public school system!  The good news is, it is much harder on us than on our kids!  Our kids do great, time and time again.  Anchor Center alumni parents return to share stories of their thriving children, making new friends and exploring and learning in their new classrooms with amazing teachers.

But there are steps that you, as a parent can take to make the transition to the new school go as smoothly as possible.  You will be your child's strongest advocate in the coming years.  Now is the time to start building a relationship with the new school.  On the Anchor Center webpage under the parent resources pull down, click on Home Port and you will find a wealth of information pertaining to transitioning to preschool and kindergarten.  Or try the link- www.anchorcenter.org/Data/Sites/1/newsletters/homeport2011.pdf.  This latest issue of the parent newsletter has valuable information and steps to follow whether your child is transitioning from Anchor Center Toddler program or Preschool program to public school.  Change is hard and the more prepared you are, the better for your child and for you!  One of my favorite quotes has always been "Information puts fear into perspective."  So please take the time to read this issue of Home Port, talk to your Anchor Center TVI about tools that will help your child succeed as he transitions to a new school, and most of all, be positive and know that life after Anchor Center will be rich and rewarding.  We will miss you and your family but you will go forth and conquer and make us proud.  The time we've had with your child and your family has been a gift and we thank you!

---spring, 2012

was the headline in a recent article in The Denver Post.  I am the last person to read the sports page, believe me, and I have little interest in the Rockies challenges toward winning whatever it is they are currently pursuing.  I wish life was all about winning a game.  But this article caught my eye and it was about real adversity and real life.  It was about me—it was about you.

Erik Weihenmayer lives in Golden with his wife and two kids.  He climbs mountains.  Really big ones, like Mt. Everest.  Another super athlete who has time and money to waste?  What could we possibly have in common with him?  I didn’t do much hiking in the mountains this summer and I imagine neither did you.  My summer has been spent with Benjamin, with three (minor) surgeries and numerous trips to the doctors, sleepless nights and constant worry.  Too many of you have dealt with similar, and some of you much bigger, issues.  As parents of young children with vision loss you are coming to terms with your “new normal,” with a world turned upside down.  Climbing a mountain so much higher than Mt. Everest, a mountain you didn’t ask for and a mountain that seems to have no summit.  You began the climb with no gear, no provisions, no support team.  Just a child whom you love beyond words—but there is fear and trepidation mixed in that love because you don’t know if you are up to the climb, and you don’t know where and what the summit is.  And for many of us, our children have multiple health issues.  Too many of you have children with seizures that are difficult to control, so difficult that the vision issues are secondary.  There are times when you wonder if you can take another step…

Erik has been there with his family.  Erik was born with retinoscheses, a degenerative eye disorder, and he has been completely blind since he was 13.  He and his family have climbed a mountain similar to the one you are on now.   He has been breaking down barriers and facing challenges all his life.  And his challenges and journey have been unique to him, just as every Anchor family has a very unique journey, with the challenge of vision loss bringing us together.  Why I admire Erik isn’t so much that he’s climbed real mountains and hasn’t let his vision loss define him or hold him back—I admire him because he believes in the potential of every human being.  My child with deafblindness and multiple disabilities will never climb a mountain. We call a good day a huge achievement.  We celebrate when Benjamin reaches for a toy and shakes it, takes a few bites of food, laughs and responds to us. When he is healthy and happy.  Erik believes in all of us overcoming our challenges—whatever they might be.  In testing our limits.  And in the Denver Post story he is helping war veterans test their limits and regain confidence in themselves.  He is helping them find their “new normal” and realize all they are capable though their lives have been redefined by a disability.  He compares summiting a mountain to life—to our lives—It’s being part of a team, and there will be adversity, but it will be different than having bullets fly over your head.  We’ll be sticking together and taking care of each other.  We’ll get through it, and we’ll be successful and we’ll come down.  You suffer with people, but you get through it and it really adds a lot to your quality of life.

Also in the article Erik says of the veterans, “They’re working their way back into the world, and it’s a tough transition.”

And that is why you and your child receive services from Anchor Center.  We are a part of your support team. The teachers are providing you with the gear and provisions necessary for your journey.  You and your family will leave Anchor Center ready for the world.  Erik has spent time with our families in past years, sharing his experiences growing up. He is on our advisory board and he has faith in our ability to overcome our challenges.  We are all at different places on our journeys. Some of us have found our new “normal” and are living our lives…many of us are struggling with challenges that seem endless.  But we will “be sticking together,” and your fellow Anchor parents, myself, and the Anchor staff are there for you.  Know that you are not alone in this journey, that other parents have gone before you and are alongside you.  That each step can be hard, that they will get easier.  You have the love of your child and family to sustain you, the support of Anchor Center and the belief of a local mountain climber in you, all holding on to that rope, that lifeline that will carry you and your child to the summit.

To read the August 7, 2010 story in The Denver Post on Erik’s Soldiers to the Summit expedition go to www.denverpost.com and search Erik Weihenmayer.  For an engrossing read check out his autobiography from the Anchor Parent Lounge Library, Touch the Top of the World. 

Today I am grateful for the summer camp at his middle school that didn’t hesitate to include him when I asked if he could attend a few days a week.  And for the woman that was very willing to attend with him.  I pay her.  There is not a funding source for everything—sometimes it is just up to us. 

Vacation?  Well, these three hours before I pick him up when I can totally focus on other tasks count.  I had hoped for four days in a cabin in the mountains next week.  But Benjamin just received a new feeding tube and something is obstructing it so his feedings are taking two hours apiece.  After many (many) phone calls, we will need to come down to Denver for an upper GI.  It is what it is.  He’s feeling good; we took a walk after dinner recently.  I think he likes leisurely meals!  But during the school year six hours of feedings will not cut it (and my sanity is at stake!).  So we will call this a “vacation interrupted,” and hope to figure something out with the feeding tube.

I look back at my journal from 1997 when Benjamin was only a few months old.  I was still hoping his eyes might meet mine.  My six year old was asking when Benjamin would crawl.  I talked to her about “special needs,” as I struggled to understand it all myself.  But now, with an almost thirteen year old, a sixteen and a nineteen year old, I can look back at this journey to date, be so proud of all three of my children and the joyful life we have as a family, and be grateful for a vacation—even if it is a “vacation interrupted.”  Because there was a time when the whole concept of a vacation seemed totally foreign.  Now, whatever time we have to escape, whether physically or just for a few hours, is sacred.  And I am grateful for that.  I hope this summer allows you and your family a break, a time to just “be.”

--Summer, 2010

But the labels will continue to follow Benjamin all his life as they will many Anchor children. So we need to shift our perspective. Consider labels your necessary “friend.” Look at them as your child’s “passport to services.” You’ve heard the cliché—“if you can’t beat them, join them?” Service systems love labels…or at least depend on them to categorize the provision of their services. Your child’s diagnosis of vision impairment, that label of “extreme myopia,” “ocular albinism,” “septic optic dysplasia,” the labels are many but the result is the same—your child qualifies for services from Anchor Center for Blind Children.

And yes, that label, “blind” is jarring and was difficult for me to become used to when Benjamin and I first started going to Anchor Center. After all…he can see lights…by now you know that Anchor serves children with a wide range of vision abilities. The term “blind,” is all encompassing and is how Anchor began 26 years ago…and your child’s vision diagnosis is his passport to Anchor services.

Just as other labels will lead to the provision of early intervention services, education services, healthcare waivers and adult living services (for some of us). It is very important to me that the term “deafblind” be marked on his Individual Education Plan (IEP) under disability. Because that is Benjamin’s avenue for learning. It gives the educators a focus and leads them towards resources that are appropriate. I don’t use that term when talking with families (visually/hearing impaired is “softer”) but deafblind has a stronger impact on educators and helps him qualify for certain services because of its strong connotations. And, obviously, we always need medical reports or evaluations to support the labels.

So yes, labels can hurt and fortunately, some of the more outdated and hurtful ones are beginning to disappear as our society becomes more accepting and understanding of differences. But the bottom line is, there are times when labels are useful. Use them to your child’s advantage. And know that labels do not define your child. Your child is much bigger than a simple word. It’s just a category used by the system. No one knows your child’s capabilities, his or her potential. Your child is defined by limitless possibility, endless love and a unique soul. Time will numb the impact of those labels and you will become a pro at using them as necessary and recognizing them for what they are—a passport to services.

I once started a talk by asking which parents would prefer – hell or transition. The answer is hell, of course, because then you know what you are getting into. When it comes to our kids and their early intervention program – where much of their therapy and support has been home based and family centered – it’s hard to imagine their transitioning into a preschool program or a kindergarten at an elementary school. And most of the time, it isn’t just the educational setting that is changing, but the entire team and system that will be educating your child. And that is scary.

But it will be OK. The more you know and understand, the better you’ll feel. By the time your child leaves Anchor Center for Blind Children, whether it’s at age three or five, you should have a good understanding of your child’s vision abilities and needs. If you come to Anchor Center for class and parent programming, you should know the differences between an IFSP and an IEP. If you need a review – and we all do at times – check out peakparent.org for information on the law and how to advocate for your child. For IEP information specific to a child with vision loss go to http://www.unco.edu/ncssd and click on the link to pop up IEPs.

Paula Stallman, teacher of the visually impaired at Anchor and mom to Maddie, an Anchor graduate, and I have very different children but have much in common in our approach to our kids education. Benjamin is eleven and is deafblind with multiple disabilites; Maddie is seven and has Leber’s Congenital Amaurosis. The bottom line, we have found, as our kids have moved forward on this journey, is to approach each meeting, whether it’s a transition meeting or IEP, with a good understanding of our child’s needs. You should arm yourself with any evaluations and reports, making sure the right people will be there, and finally – have an attitude of confidence and optimism, knowing that everyone around that table is there for your child.

Remember:

• It will take time for educators to get to know your child. Vision loss is a very “low incident” disability, your child’s new teacher and therapists may never have worked with a blind child before. Use your teacher of the visually impaired to help educate the educators. And—note from Paula—during the transition process make sure a TVI is at your child’s evaluation and the meetings! Never assume!

• As your IEP team gets to know your child, respect their knowledge and professionalism and listen to them. Expect the same respect from them in return.

• For Maddie’s transition meeting Paula put together a “parent report.” Therapists always give an overview of what our children are doing in their specific area—it was important to Paula that the evaluation and transition team understand who Maddie was as a person—at home and with her family. I had a scrapbook—or transition portfolio-- I’d made that I brought to our transition meeting and IEP meeting. As Benjamin prepares to transition to middle school we are updating it for next year’s team. These tools help the educators know who our children are as people—the whole child. That they are not defined by their diagnosis or IEP goals!

• Project an attitude of openness and willingness to problem solve together. Balance any suggestions/criticisms you have with positive comments and be available to help in the classroom if your schedule allows. Be accessible.

• Build friendships. Try to nurture at least one “professional friendship” on your child’s team. Remember, they have kids too. Take an interest, ask about their children.

• Determine the best communication method between school and home. If your child is bused and you will not be in the classroom at drop-off and pick-up times, start a back-and-forth book. Ask the team what works best for them. Do all you can to strengthen the partnership between home and school. Benjamin’s team requested a monthly 7:30 a.m. meeting to share information regarding his progress and needs. It’s a killer for me to make that time work – but I’m there every month because it’s the best time for them and the ONLY time my child’s team communicates with one another except for the annual IEP review.

• Know your school’s principal!! For every request or complaint you may need to make – be sure to balance it with the good! And make a point to meet your director of special education – call the special education department, find out when there is a parent/district meeting. If you run into big problems down the road (and remember, preschool or kindergarten is just the first stop on a long road) this relationship will be invaluable.

• Your child has taught you a few lessons. For instance, persistence and tenacity pay off. Swallow your anger. Sometimes, things take longer to achieve than you would like. Choose your battles. Learn from your child. All these lessons can be applied to your new school and team, as well.

• Your child’s education needs will change from year to year. Your school district offers a “continuum of services.” What is decided upon by you and the rest of the IEP team for one year may be different the next year. Perhaps the appropriate educational setting will be different, perhaps the accommodations and modifications will need to be adjusted, perhaps team members will need to be added. An IEP can be changed at any time, not just at the annual review. Only you and relevant team members need to be there when and if you make an addendum to the IEP. Stay on top of what is happening in the classroom so you can call a meeting if need be.

• Remain open and flexible – another lesson learned from our kids – there is only so much we can control. Benjamin began kindergarten in a general-education classroom with lots of support. Maddie is in a general education classroom in her neighborhood school, as are most of our Anchor graduates; however, some children, such as Benjamin, have further challenges that may necessitate evaluating the placement and reconsidering the options annually. BUT no decision can be made without you—and your signature is required for all placement decisions.

• Paula and I both request a draft copy of the IEP prior to the actual meeting. We find that having something to work from prior to the meeting helps us be prepared and know what to expect. We write down questions ahead of time and informally talk with team members—we don’t like surprises when it comes to our kid’s education! And it helps calm our nerves. Some parents don’t like a draft ahead of time—it may not be appropriate for an initial IEP, but is often doable as the school gets to know your child in subsequent years.

These are some of the lessons we have learned along the way. I also remember the sleepless nights and the incredible anxiety the transition from Anchor to kindergarten caused me (not Benjamin!). Every year has been different and as Benjamin transitions to middle school next fall, I can tell you that it’s easier and less nerve wracking than the Anchor to preschool/kindergarten transition was five years ago. Because I have gotten to know the public school system—and you will too. Paula experienced similar “transition anxiety” but Maddie has a wonderful team and is thriving in her neighborhood school. As parents we know more than we realize; but the fear of the unknown and the fact that our children have experienced unusual challenges in life – life-threatening in some cases – sets us up to do battle. It’s intimidating and we hear horror stories from other parents. Be yourself, believe in your child and his or her potential, believe in the good intentions of the professionals gathered around the IEP table, be prepared to support your points with evaluations and educators that already know your child, and the transition will be good. It’ll be scary and emotional for you, but it will be OK. You owe it to your child to let go a bit at a time; it will take time for you to trust the new team and the new school – and it will take time for them to trust you. But your child’s success depends on your ability to build that trust. Look at how far you and your child and family have come already. Together, you can conquer anything. We guarantee it.

Karen Roberts is mom to Benjamin and is the Family Specialist at Anchor Center for Blind Children. Paula Stallman is mom to Maddie and a teacher of the visually impaired at Anchor Center for Blind Children.