Looking for advice and courage

Hi, I have a daughter (22months) who has P-ACC, epilepsy, global development delay, visual impairment, I also have another daughter who is 4 with no health issues. I am looking for someone who can give us some feedback on how their child developed and what they can and can’t do know. I hate no knowing who good or bad she may be. I know it is a hard question for doctors to answer but not knowing is also hard.

Some feeding back and encouragement would be terrific. I am also looking at trying to contact families in Australia with similar problems.

I am new to this site and advise would be great.

Thanking you


Welcome to CarePlace! I hope you find this to be a loving and supporting community for you and your family.

I have a daughter who was born with ACC and multiple midline defects. She will turn 8 in two weeks, and she is currently mainstreamed in a regular 2nd grade classroom with 3 hours of aided help, and many pull-outs for academic help. We joke that she is “holding her own in the bottom 5th percentile” and we couldn’t be more thrilled with her progress.

The unkown is the hardest thing to take, and I’m afraid that there are no two ACC children who are alike. The are like perfect snowflakes, each with their own unique set of God-given challenges and blessings. There is no rule book for these kids…there is no “What to Expect when what you epected didn’t happen” manual…I’m really thinking about writing one myself! LOL!!

Here are some things for you to think about. They are therapies that I did with Caitlin, and I don’t know if any or all helped, but I know that she is riding a bike (with training wheels) and able to read and write, which is a miracle in my book!!

*Music Therapy…play baroque or classical music whenever possible. This helps the brain to re-arrange itself, and can be relaxing to your little one while brain mapping or problem solving. Bach is good, Brahms is not. Mozart is good, Mahler is not.

*EFA’s= Essential Fatty Acids…try one like this one from Kirman Labs:
I believe I saw marked improvement with brain function when Caitlin started on Omega 3’s. Along the same lines, be sure that your child has an adequate multivitamin and a probiotic on board to aid with digestion, as many of our angels have digestive issues.

*Do excercises that force your little one to cross their center. And example would be anything that crosses their hands across their body to reach for something. Your four year old will love helping you with some basic excercises. Try a book like “The Out of Synch Child has Fun” (http://www.amazon.com/Out-Sync-Child-Has-Revised/dp/0399532714)
This book has many many many GREAT excercises for our angels!!

*For more in-depth answers to your child’s brain function, read “What to do about your Brain Injured…child” http://www.amazon.com/What-About-Your-Brain-injured-Child/dp/0757001866/ref=sr_1_1?ie=UTF8&s=books&qid=1200800182&sr=1-1
It is a great resource that can be hard to read, but provides a lot of info.

*Don’t let yourself get overwhelmed by thinking you have to fill every minute of every day with therapy. Do 15 minutes at a time, when you can. Give yourself breaks and pampering…love your husband from time to time, and let your 4 year old embrace being the big sibling. You are lucky to have an older child to be a playmate, teacher, coach and forever friend.

*Know that you are not alone. There are many of us who have been where you are, and many more who will be where you are now. I am so grateful to have the world wide web at my fingertips, because without it, I know I would feel isolated and hopeless. We are here for you, and so are thousands of others that you will encounter…so, although we may not have all the answers for you, we can all muddle through our questions together!!

Peace and Love;