About The Blogess of Finding Ninee

Maggie Amada - Thanks for sharing your story. Parenting is hard, no matter the issues your children face. I can’t imagine what it would be like to have a child with developmental challenges. I’m sure, whatever it does, it makes you see the world with a different flavor.

One thing I’ve noticed about writing is that it makes you more honest and more open. It helps you deal with the things you might bury otherwise. When we share it, writing forms a connection with the outside world and lets us know we are not alone.

Publishers may not want to take a chance on your memoir, but individual people probably will. Maybe we’ll see a self-published book from you in a little while.February 2, 2013 – 10:11 amReplyCancel

Bonnie-Welcome to Breannaldh's World - Hi Kristi! I’ve been reading this and your “about” section. I would have loved to have someone to talk with about these issues when my son was tiny. I’m so glad that we have the internet now. It makes such a difference in our world to be able to connect with people you wouldn’t know were going through the same things without it.

I have a son, who’s in his early 30s; so as much as I would like to tell you a lot of details about my son’s issues, and how similar our stories are, I feel that it would be an invasion of his privacy.

I can tell you that I knew within a few months of his birth that something was wrong although I couldn’t tell what it was. Family and friends thought I was imagining things. By the time he was a year old I was totally convinced. But it wasn’t until the city I live in sent a public health nurse to our house to evaluate my daughters’ developmental status that I had an official medical opinion of a problem. My city evaluated all 18 month-old babies to see whether they might need services for various delays.

My son was close to three years old when he was evaluated, because we had moved into the city when he was 15 months old, and the public health service was not aware of us until our twin daughters were born. The nurse evaluated him and expressed the wish that she had seen him at 18 months because there were programs and other evaluations that could have been done. But he had to have been evaluated at 18 months old in order to qualify. She found that he was way ahead of schedule in some things and way behind in others. There was no middle ground. My daughters at the right developmental stage for their age.

I had been asking my pediatrician to recommend a pediatric neurologist. He didn’t want to do the referral because he saw a very bright child with some different, but not disturbing, behaviors. Bright children, he told me, often behave differently from others.

I kept pushing and finally got the referral; but we could not do the evaluations the neurologist wanted because the hospital she worked out of would not follow her recommendations for administering the tests to toddlers as opposed to adults. We never got a diagnosis.

Long story short. I will share this with you: my son is extremely bright but had a very hard time reading body language and facial expressions and silences and he had emotional issues. He has overcome a lot of these issues. Now he has the same issues that all adults have.

He went through some very hard times; yet earned his BA and entered the work force. He has been a member of a band for more than fifteen years; has traveled throughout Europe and the United State four or five times with the band; writes and records music and has a tight group of friends. He writes his own blog. He made it.:) It was a very tough haul for us both as well as the rest of the family. (I was his main advocate and I had to do it every day, sometimes several times a day.) It does affect the rest of the family when a child needs so much of the parents’ attention. I’m really proud of my three daughters because they understand the issues even though they felt really left out a lot of the time.

II’m tired; so I hope it won’t upset you that I can’t remember which boy has trouble with certain sounds. I recommend that you ask your pediatrician to refer you to an ENT to evaluate his tonsils and adenoids. My nephew could not make the “k” sound at the end of words, and this made it very difficult for him to speak clearly. It affected the way other children and adults, particularly teachers, responded to him. They would either yell at him or dismiss him.

My nephew’s doctor had him evaluated and it was determined that his tonsils and adenoids should be removed. After the surgery, with speech therapy, he picked up the sound. It vastly improved his pronunciation and people responded to him positively because they could understand him. He speaks perfectly clearly now, and no one who doesn’t know his history would ever guess that there was a problem with his speech. It might not be the answer for the little one. But if you haven’t already done so; it couldn’t hurt to eliminate that as a problem.

I will add that until I was twelve I couldn’t breathe through my nose and had a very strange voice both of which were corrected with T and A surgery ( no not THAT T and A :P) and also surgery done on the bone and sinuses. What a difference that surgery made for me. I was able to breathe through my nose and it changed the quality of my voice. It also ended the recurrent double ear infections and the tonsillitis.

I wish I could talk with all of you in person to let you know that you just take it one day at a time. And in each of those days for me there was at least one funny or sweet thing where my son was concerned. He had a beautiful smile and a sunny disposition and that’s what I remember most.

I’m sending all of you moms a great big hug because you really deserve it.:-)February 22, 2013 – 1:25 amReplyCancel