The Journey Of A Beautiful Brain

This blog is to help support and give resources for parents raising a child with any diagnosed or undiagnosed mental conditions. My list for my child over the years some still applicable and some not autism, Aspergers, OCD, ODT, ADD, ADHD, Apraxia, anxiety disorder, depression disorder, manic depressive disorder, sensory integration disorder. I call this Blog a Beautiful Brain because just because something is difficult and different does not make it unwanted. Each child is beautiful !! Even in our darkest times when I have wondered if my child is still in there. I hold to the fact that life is a Journey and there will be moments of Joy and seeing my child for who he is and not what he struggles with.

For those of you out there, living with a child with a diagnosis, please know your not alone. It’s so overwhelming when you first hear the Dr say some condition, you know nothing about. Let me tell you diagnosis’s are important, In that they are a starting point to research and learn ,but they are not the end point.

My feeling is label my child with whatever you will but it’s just words on a paper at the end of the day.  We have to wake up, function and get through each day. So don’t just tell me what he has and how bad it is. Tell me what to do and show me tools to help us survive. Medications can and do help. Trust me we have been and are going through our journey on those; but they are just as complicated and can be as problematic as helpful.

For years people have asked me to start a blog to more easily share all the information I have learned through experiences over the years. This is not easy to do but with so many families suffering in silence. I feel it’s time to share my story and resources I have learned.  Most important, that you, are not alone. You are never alone, especially when you feel the loneliest. I am still in my journey learning, finding, struggling, laughing, crying, holding on and having faith too circumstances that are every day changing. Life is Change. Life is Hope. Life is never giving up. The hardest thing with children like this; is what works one day might not work the next. Just know your not going crazy and there is help out there.

My Journey Began By Doing something considered pretty normal by society…. having a baby. My husband and I welcomed our first born baby boy into the world on a chilly day in November. Who knew, What seems so typical would become the most atypical journey of my life.

It’s important to mention I had a lot of preterm labor around 6 months. Had to be put on bed rest and medications. It was also a difficult delivery. I share this but many I have talked to over the years, but not all,  share this in common of a difficult deliveries.

Being a first time parent is amazing and difficult for anyone. Being a first time parent of a child that’s suffering with challenges, that you won’t even realize until looking back how different your Day to Day was, is….let’s say unique. You are special, your child is special, and I am grateful I survived that period in my life.

Many babies in our community were born around the time my son was born. Oh yes “Baby Wise “ and Some book with the name like “best baby in the block “ were all the new mommy “IT” thing. Yes, have those babies on a tight schedule and be sleeping through the night by 6 weeks. Actually worked for many of my A type friends at the time. Who knew the schedules I would be keeping were from demand feedings to keep my little guy out of the hospital from failure to thrive. He was born with a suck reflex that did not work. Let me tell you there is a correlation between poor suck reflex and speech issues. Many, not all children, who end up diagnosed with something have had “trouble eating” issues as enfants. He also didn’t need much sleep,

I think the first time I realized ,without realizing, something was wrong was at a lunch with friends. Many had their babies or were talking about babies. I remember hearing for sometime how much they loved their little ones all they did was slept, ate,  and cuddled. At some point in conversation, looking back I was totally sleep deprived (probably to the point of crazy ) I semi shouted “I hate this, this is the hardest thing. What are you all talking about, my baby can’t eat, doesn’t sleep, and cries more when I cuddle him “

Sadly I remember a lot of weird looks and I just left. I wish I could have given myself a hug that day, said to my younger me, it’s ok it’s not the same and your a good mother. It’s hard to feel like a good mother when you don’t get those mile stones or verbal rewards we give ourselves in society. That really have more to do with the little spirit we are holding in our arms then our capabilities. If we are trying, giving our best and loving that child…….that’s what matters most. For you see some childrens minds just process things different. Later at 18 months I would discover my son had sever Apraxia and couldn’t speak. A frontal lobe speech disorder. Also so many tummy problems. We had to spend a good portion of our income monthly on nutramigen.

He didn’t digest milk, soy was a nightmare, and this was the only thing that worked. From here we went to goats milk for years, tried milk again, and now off milk (for most part) entirely.

Now I love things natural! I tried breastfeeding, pumped non stop for months. He couldn’t suck , so had to use a dropper, like feeding a baby bird. Eventually even my milk, even when I ate nothing but rice and chicken to avoid anything with a allergen, just didn’t work. So grateful for nutramigen. If your a young mother struggling to feed her baby reading this, or couldn’t breast feed or did breast feed, just know it’s not your fault. We are so scared to do something wrong to our child and then when something is wrong we blame ourselves. It’s ok to not breast feed, it’s ok to breastfeed. Every circumstance is so different, just love yourself and do what’s best for you mentally, emotionally and for your family.

Wow this is longer then I anticipated. Going to leave off tonight this far.

Other good things we found that help the constipation for him were

Warm baths , bicycle with his legs

Massage his stomach

Gripe Water to help colic

Diluted Lavender oil, rubbed on feet

Baby laxatives

Help with cost of nutramigen

https://www.enfamil.com/feeding-issues/cows-milk-allergy-center/nutramigen-savings-and-support-program

https://www.thebalance.com/get-free-baby-formula-1356463

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s