When Brayden was born, asi when most children with hydranencephaly are born, diagnosed, and given the long list of impossibilities; the least of your concerns is on beginning preschool in 3-4 years or kindergarten in 5 years. But for many parents in our community, that ideal milestone is met by their child with hydranencephaly; they start receiving early intervention services at birth and find themselves discussing transition to the school district by the age of 3 years old, despite the grim prognosis weighing heavy on the family's shoulders. The transition is difficult, most usually for the parent more than the child. Did you make a 2014 resolution to be more active in your child's school?
Not only is it an easy way to stay close to your child without looking as if you cannot let go, but it is a way to build incredibly important way to build personal relationships with those who are filling your child's day when you aren't. The fact that your child cannot communicate the goings-on of the day, makes this even more important than instances with your typically developing children. Think you don't have time? WRONG! A list of options from our friends at About.com Seven Ways to Volunteer at Your Child's School: When You Have No Time to Volunteer at Your Child's School 1. Try Job-Sharing Maybe you can't spare a morning or afternoon every week to, say, work in the library or help out in your child's classroom. But if you can arrange for the time once a month, see if you can split a volunteer job up with another parent or parents on a tight schedule. A little time helping out, seeing and being seen, is better than none. 2. Be a Class Parent Often, this job consists mostly of making phone calls to warn of school closures or to gather donations for class parties -- things you can do at home, on your time, while still being recognized as a helpful parent. If there are responsibilities you can't fulfill, try splitting the job with another parent who can, someone who's happy to give up the phone-calling part of the job. 3. Look for Evening and Weekend Activities Most schools have some activities outside school hours that require parental assistance -- dances to chaperone, refreshments to be served, enrichment programs to be taught. Additionally, there may be once-a-year activities like field day or field trips that you could make yourself available for. Keep your ears open. 4. Find a Long-Range Project Does your school have a yearbook that's put together by parents? A school newsletter? A big fundraiser? An end-of-the-year celebration? Those are high-profile projects that often require evening meetings and extensive at-home work but not a lot of school-hours participation. Yearbooks are a particularly good thing to get involved in, since you can make sure your special child and classmates are well-represented. 5. Go to PTA Meetings They're not the most fun way to spend an evening, but PTA meetings are good ways to find out what's going on in your child's school, and meet administrators in a non-adversarial context. They're also a great way to find out about volunteer possibilities in the four categories above that often don't get broadcast to the general parent population. 6. Attend Special Events If you can't take time away from your child to volunteer in the evenings, then just attend the events with your child. Bringing your child to a school concert or play or game or math night makes both of you more a part of the school community, and can allow you some informal contact with school personnel. It's good to see and be seen. 7. Be a Benefactor Here's an opportunity that takes none of your time, just some of your money: Ask your child's teacher if there's something needed for the classroom that you can donate. Teachers often spend their own money on classroom essentials, and you can earn some good-parent points by helping out. Other possibilities include donating equipment to the school therapists, books to the school library, or money to a scholarship fund. It's not as good as getting personally involved, but any contribution is better than none. So, find a way to tie yourself to your child's school and find yourself feeling being much more at peace with your decision to place them in to an organized classroom; as well as working to build awareness of your child's condition and the possibilities that exist for them! You are their voice and only you can speak on their behalf when someone is trying to connect with them.