Friday, July 20, 2012

NOAH Conference Sessions: Team Parenting, The Great Adventure

Another two good sessions at the conference this year were “Team Parenting” and “The Great Adventure: Discovering the joys and challenges as the parents of children with Albinism”. Each was geared specifically towards parents, talking about marriage and struggles that come along with raising disabled children. “Team Parenting” focused on keeping up with a healthy marriage and making sure the “balance of duties” did not fall to one parent but that the work load was shared between both equally. “The Great Adventures” was more about the struggles the parents of a child with Albinism face each year as the child grows. They were both equally helpful to us but I have far more notes from “The Great Adventure” session since “Team Parenting” was almost a repeat for us from our pre-marital counseling sessions years ago—always a good reminder though—plus I was in and out with a sleepy, cranky Liam! Here are my notes from each:

Team Parenting

- Make sure you have regular “meetings” outside of you date nights to discuss schedules and agendas for the kid(s). Go over appointments, school events, problems with schools or the student, concerns or current fears, and anything on the family calendar. Make sure to keep you date nights separate and NOT about these issues!

- Look for ways to stay in touch with each other. Weekly date nights, text messages, leaving notes for each other, coffee dates, mid week lunch dates, evening walk around the block, etc. Make them rituals so that you will get into a routine of this so that neither partner feels neglected in attention in any way.

- Take turns. Don’t make it a habit for only one parent to take the child to doctor appointments and the other to do sports, take turns doing each of these so that the balance is the same for both parents. Important that each know what is going on at the doctor/sports/school/etc.

- Remember to say “Thank you”.

- Make sure to take time not only with your partner but with yourself. Have “alone time” often to “reboot” and relax and make sure your partner is doing the same.

- Show appreciation. Make sure, on top of saying “thank you” that you let your partner know how much you appreciate the things they do. It helps to be specific in this area when showing appreciation, ex: for doing the dishes, for cleaning up the yard, for taking them to soccer, etc.

- One on one time with each child. Make sure each child gets one on one time to do an activity they each like so that no child in the house is feeling neglected due to another child’s disability. (This can even sometimes be just taking ONE child with you on errands and alternating each time.) Make sure each parent is doing this with each child not just one parenting getting one on one time with the kids.

- Make sure the load is shared. Often times in any family the “work load” is unbalanced but in a family with a disabled child where there is even more work (doctor visits, therapy, etc) the load is doubled often on one parent. Make sure you and your spouse share responsibilities and that neither of you feel like you carry more of the load. It is easy to “burn out” if the load is not even. Share doctor appointments, therapy visits, school meetings, fixing lunches and cooking dinners, the household chores, etc.

The Great Adventures: Discovering the Joys & Challenges as the Parents of Children with Albinism

-Make sure your child with Albinism has older friends with Albinism, they will act as mentors to them often times. Make sure you have other families affected by Albinism to support you and to talk with through different issues you will face.
- Educate- Yourself on the child’s condition, your family and friends, and the child’s teachers and peers.
-Share the information with the child who has Albinism. Often times you need to explain to them why they look different, why it is important to protect them from the sun, and why their eyes work differently than others. Don’t assume the child knows this or does not need to know.
- Seek out and learn about all the low vision solutions and test them out to see what the child likes or dislikes.
-Be an active member in your child’s IEP meetings.
-Don’t assume everything in your child’s IEP is being done or followed. It does not hurt to follow up and double check.
-Cheer on your child and support their decisions even if you disagree. (Some children may want to try to do things with their limited vision that you think is not going to be possible but no matter if it is or is not they need to know you support them trying to find out for themselves.)
-Close your eyes and let them take chances. Example: It may scare you to watch them play baseball or ride a bike because you are afraid they will get hurt but don’t let this stop you from letting them try! They may even succeed!
-Ignore limitations. At first when they are little and first diagnosed lots of doctors will tell you “they will never do this or that” but do not let that worry you or stop you from letting them try. So many times the doctors are giving you “worse case scenario” which is not always true since the vision and abilities range differently for each person with Albinism.
-Expect the same from all your children even those with/without Albinism. You children should all be treated the same, get to do the same things, punished the same, etc so that none feel favoritism or limited on what they can do.
-Kids with Albinism often find their own way of doing things like reading or watching TV, let them find what way works for them and do it that way, don’t try to force tech devices on them to help with their vision if they do not want to use them.
-Don’t prohibit or limit sun time just make sure to use sun protection.
-Don’t let the child isolate themselves from others due to their different appearance or vision.
-Remember even having two children with Albinism they will not see the same!
-Include siblings without Albinism in everything, let them help the child with things as well and vis versa.
-Answer the child’s questions about Albinism and their sight don’t deny it, tell it like it is.
-Observe them, their behaviors, and such to see what adaptations need to be made in your home environment and at school. Do they need a stick/cane, or a guide dog, do they need more or less sun protections etc.
-Keep up to date on all laws and regulations involving your child’s condition.
-Canes can help with sensory processing to “feel out” their environment.
-You know best for them not their teachers or aids!
-Find the beauty in Albinism. It’s not all bad!!

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