Welcome Parents!

[JBowman]

Hello Everyone! My name is Julie Bowman, and I am the mother of a child with visual impairments. First of all, I want to welcome you to the boards. I hope that others will join this thread and we can get to know each other. I also hope that I can offer information, advice, or just a shoulder to lean on.

My daughter Mary was diagnosed with visual impairment at 4 months of age. She has suspected ocular albinism as well as cortical visual impairment. For those not familiar with these conditions, the functional result is that Mary's vision is reduced and she also has trouble visually attending (she looks away, rather than at, objects). Mary also has other disabilities, resulting in delays in all areas (gross motor, fine motor, speech -- the whole package!).

Needless to say, I have been through many phases of adjustment (especially since Mary's diagnoses have evolved and changed over her life). I went from shock and disbelief to wanting to "attack" the problem and learn everything I could about visual impairments to meeting other families and getting support and finally to where I am now – enjoying my daughter and living a fairly “normal life.”

Mary is now 2&1/2 and a joy to be around. She has made so much progress in these past 2 years, I can hardly believe it. That doesn't mean that she doesn't still have big challenges ahead, but I know she (and I) will handle them just like we have handled everything else -- one step at a time.


I think the key to our success is connecting with other families. I was fortunate to be able to join a Mothers’ group of absolutely fantastic moms. Besides being great role models, they shared information regarding therapies, support groups, educational options, medical issues, and so much more. For those who don't have a group, we have the wonderful resource of the internet to connect us, and so here we are on these boards. I hope that others will share their stories -- there are many of us going through the same things, and by letting each other know that we are out there, no one feels alone

[JBowman]

Hello again parents!
I thought that I might share a bit more in the hopes that it might be helpful to you. The question I wish to address today is: what do I do after my child has been diagnosed with a visual impairment? Well, obviously you will have some emotional adjusting to do, but we'll leave that for another discussion. For now, let's talk about taking action. Here are 2 of my suggestions...

First, check out the Hadley School for the blind (www.hadley-school.org). They offer distance education classes for families of children with visual impairments (as well as for persons with visual impairments and professionals). I have taken 2 courses so far, and they were extremely helpful. I still use my “Reach Out and Teach” textbook today. This is the course I suggest you start with because it teaches you how to turn your daily interactions with your child into learning experiences. That is, you are your child’s first teacher, and this book helps you to make the most of it. If you are nervous about taking a course, know that the pace is comfortable and the instructors very understanding. It is well worth it!

My next suggestion is to have your child referred to Early Intervention (EI) or Special Education. A doctor typically makes the referral, but you can also do it yourself by calling 1-800-905-TIES to get the number for the EI agency that serves your town. For more details on EI in Massachusetts, here is a helpful website:
http://www.mass.gov/dph/fch/ei.htm
Special Education referrals are typically made by teachers, but if you have a concern, you can talk to your child’s teacher or principal yourself. Most towns (in Massachusetts) have a special education Parent Advisory Council (PAC), so I would recommend calling a member of the PAC and asking any questions you may have about the process. You should be able to get the appropriate phone numbers from your school district’s special education office.

I hope this helps!
Julie

[JBowman]

If you haven’t seen it yet, you should check out the new page on advocacy on this (ADVISOR) website. Advocating for our children is a lifelong job, and the more we learn about our children’s rights and educational needs, the better. In fact, a parent’s knowledge and understanding of the special education process, special education law, and educational issues related to visual impairment has a direct relationship to the quality of his or her child’s educational programming. You can find information on the first two topics on the new page I mentioned (just go to the parent page, then look for the new featured link on advocacy), but I want to make sure I point out where you can find the third topic. What I am referring to here is the Expanded Core Curriculum (ECC) for students with visual impairments. Fortunately, there is a wonderful page on ADVISOR containing a video presentation as well as additional resources on the ECC. The link to the page is here:
http://www.e-advisor.us/workshop/expanded_core.htm
but you could also access it from the parent page by clicking on the icon for the ADVISOR workshop (in the featured links).
If you already know all about the ECC, congratulations! You are doing a great job already. If not, here is a quick summary: the ECC is an additional set of curricular areas that cover the unique needs of students with visual impairments. These areas are compensatory skills (including communication modes, braille, listening, etc.), orientation and mobility skills, assistive technology skills, independent living skills, social skills, recreation and leisure skills, career education skills, and visual efficiency skills. These skills are typically learned using vision, so they must be systematically taught to our children by a trained Teacher of Students with Visual Impairments (TVI) and an Orientation and Mobility (O&M) specialist. You want to make sure that these areas are addressed in your child’s educational plan. Once you do, you are on your way to becoming a strong advocate for your child!