Pachygyria

I do not have any special needs children, but would just like to offer you my well wishes and prayers for you and your family. It must be so hard to watch your precious little one struggle. Enjoy each day you have with him as a gift from God.

My daughter has pachygyria. She was diagnosed at 6 months old. She's 13 now. She functions on the level of a 3-4 yr old. she runs, walks, talks, and talks, and talks...and repeats, and talks more... :) She attends a public middle school, is in the 7th grade special needs class, however, her academic level is lower than a 4 yr old. She has been in PT, OT and speech most of her life. Its hard to say, what to expect, since every case is different. My daughter is said to have a mild case. She does have a history of seizures, and has to take daily meds, but her seizures happen about maybe every 3-5 months. She has had eye surgery and brain surgery thus far. I personally think she needs another eye surgery, but dr's seem to think i have NO idea about that! I have always wondered how many more kids are out there with this condition, because it is SO nice to be able to speak to someone who's child has the same thing. As far as dealing with it....my father once told me, GOD would've never made my daughter this way if he felt i couldnt handle it. And thus has made me so much stronger! :)

YOU ARE DOING GREAT!!!! It's only natural to get sad. My son is autistic. We found out when he was 2 and he's 12 now. It took me a long time to realize he is the same baby as before I knew about his autism. I still get sad but he is the most honest, beautiful kid. The only thing I can suggest is to be his greatest advocate and push him as far as you can. The rewards are indescribable. He now talks, plays with his brother, swims, and is starting to read. I also saw that I wasn't the only one dealing with autism when I went to a fundraiser for autism research. Just seeing all the people who know how I felt was such a relief. Maybe there is a support group around. A good support system is essential.

Hi K., I have a 22 year old son. Due to a traumatic birth and a congenital heart defect, he had several episodes of a lack of oxygen when he was an infant and has what is now called an intellectual disability. I remember the early months, They were tough. My first big relief was the support group at Early Intervention. So I suggest you find a group. Although all our kids had different disabilities, the relief I felt when I realized that there were other moms who felt like I did was huge. I almost started to cry in front of everyone (something I NEVER do).

There is a great book to read called "After the Tears" by Robin Simons.

I learned to live day to day (sort of, lol), only looking into the future when needed (but look far enough ahead to do your wills and set up a special needs trust). You do have to plan ahead and I'm not telling you not to, but just don't get hung up worrying about tomorrow when so much is happening today.

Try to focus on the good times, the small victories and find people you can share them with who will understand. Not all moms get why you might be so excited when your kid does something at age 2 that their kids did at 1.

Give yourself time to grieve (but not in front of your son). Grieving is a life long process. It's not that you're sad all the time, but be prepared. Just when you think all is fine, you have a handle on it, something will trigger a moment. One of the ones for me was seeing 2 boys ride down the street on their bikes. It suddenly struck me that my son would never be riding down the street that carefree with a buddy. Another time was when his cousins all started driving and it's highly unlikely that he will. It's the little things, the missed milestones.

Believe in yourself. There will be a lot of people who have opinions, family, friends, doctors, and total strangers. But keep in mind that YOU know your son the best. Ignore the stupid comments... or write them down for a good laugh later.

Learn the laws. Your son has rights in the community and in education. Learn about the Americans with Disabilities Act (ADA), IDEA and Massachusetts special ed regulations. Some good education sites are www.wrightslaw.com (IDEA), www.fcsn.org, and www.concordspedpac.org. Contact your local Center for Independent Living (CIL) for info on the ADA.

Keep your sense of humor. It will help more than you possibly know. Check out www.mothersfromhell2.org.

Sorry if this is kind of all over the place, but these are some of the important things that came to mind.

C.

I have a son with special needs. He is 2 1/2 now. It has been a long journey but I have learned to take it one day at a time. You will have good days and bad days. I am not sure if you ever come to terms or have peace about it. Because that's your child and you just want them to be happy. And you wonder if they are. My son cannot communicate with me. And that is one of the most difficult. I do not know what he wants. As a mom I thank God for my instincts. That has helped me a lot. And I have him on a pretty good routine. So I can kind of guess what it is he wants or needs.
This past winter was a tough one. He had 5 cases of pneumonia and 5 ear infections. I was at the ER all the time. We got thru it and I am glad it's over. I tend to have days when I am down. And I have days when I am up as high as the clouds. And so thankful that he is here.
He receives Birth to Three services in our area. They have been wonderful. Christian is where he is today because of them. He is trying to crawl now. Something I wasn't sure he would ever do.
I am not sure if you believe in God or not. But I have a deep spiritual relationship. And God, prayer and the support of family and friends are still getting me thru. I know Christian was born this way for a purpose. And I claim that every day. I went thru a period of God why me? Why my poor son? But I recently got my answer. Why not me? I am the only one who could love that little man like he needs to be loved. I am the best person for the job. I will fight for him. I will get him what he needs. And I will be there so help him do for himself. I will help him be the best Christian he can be. I try to imagine someone else being his mother. And I just can't see it. We are all made in the image of God. God doesn't make junk. Our children are sons and daughters of a King. He made them who they are.
If you are ever interested in chatting some more please contact me. It for some reason is hard to find other parents who have special needs children.
J.

Hi. I am so happy to see this post. Being the mom of an almost 5 year old with Pachygyria, I felt very alone. Whenever we went to a doctor or ER we had to explain to them what his disorder was.

My son was diagnosed at 5 months and we began his therapy at 6 months and it is still ongoing. He has, like your son, gotten so much stronger and we are SO proud of him. It has gotten to the point where his neurologist said that she no longer needed to see him since he was doing so well!

Don't get me wrong..he still has a long way to go and may never "catch up", but if caught early and therapy is incorporated into his/her daily routine, there is nothing your child can't do.

Good luck. It sounds like you are on the right path!