Reflecting

You always think that your children are going to be perfect.  You pray that you never have to see them suffer or live anything but a happy and healthy life.  Many parents, like myself, find themselves facing problems that they never thought they would ever have to deal with.  And this is my journey.

One of my mom’s friends told her that there was something special about Frankie when he was little.  That she thought he would have some special purpose beyond of course, making us happy.  Other people noted it as well. This was before he had any issues with HL and speech.  People would stop and say that Frankie made their day or made them smile.  Of course, many babies will do this to people.  But it did seem to happen quite often.

Looking back, I think it was like a foreshadow of this journey with HL3. Frankie was extraordinary even before we knew he truly was.  They say God gives us obstacles for a reason and I think mine and Frankie’s purpose with dealing with this was and is to help other families.  People need to know about HL3 simply because our children are unique.  Yes, many of the techniques that work with ASD work with HL kids, but not all of it does. They need to use reading to help them learn.  They follow a very distinct path or timeline.  These kids deserve to be recognized for who they are.

I was so proud the other day when I was watching Dr. Treffert’s video on HL3 and Einstein Syndrome. He mentioned this website as a resource for families and I am so proud that he feels we are helping in this journey to get the word out. Parents contact me so often and they all have the same story.  They all have a Frankie 🙂  And unfortunately, most of them are only just finding out about HL3 and finally understand what their children have.  I will continue to update this website because although Frankie is doing better and better each year, I will not forget the families who will have little ones like Frankie and need this site to ask questions and discover what their children truly have.

My second son Noah is four years younger than Frankie. Frankie loves his brother so much. They play and look for each other. But of course, they fight too 🙂 All very typical. With Frankie being my first, I didn’t realize how much a 1 1/2 year old can talk. Noah started saying words right about then. He answers us already. He has been calling Ma and Da for months now. Frankie still wasn’t saying anything at this point. My mom says she remembers him saying a word or two and lost them which is what made her more nervous at the time. I learned later that HL kids can do this but of course so can autistic children which causes unnecessary worry because HL kids are following a pattern that they grow out of. I say HL but know that I mean HL3. From everything I have read, Frankie simply followed what many HL3 kids do.

On a side note as I was writing this, Frankie asked for a granola bar and I told him to wait. He decided he didn’t want to, went to go get it and then told me he wasn’t going to wait 🙂 I find myself smiling at even these obnoxious comments because there really was a time I believed he would never talk.

When Frankie was about three years, three months, he still couldn’t call us by name and he had a lot of trouble using yes and no.  As I’ve learned now, HL3 children usually will say Mom and Dad last.  It took him a few months after this point to slowly get the yes and no.  He seemed to get the no a bit quicker.  When he did finally get yes some time after that, he said it with a lot of emphasis.  We were just happy he was saying it and using it correctly.  We accepted his pronunciation of yes for some time because we didn’t want to bombard him.  Slowly, he got it. So don’t be frustrated that it seems to be taking what feels like forever.  When he was at that stage, and I saw all these other toddlers talking away, I truly thought he would NEVER talk like other kids.  If you could believe it, I know sometimes forget how worried I was and how little and how long it took him to make more than a two word sentence. And remember, even after Frankie turned four, it took time to gradually pick up more and more. By four and a half, I would say he had improved more in that time than the last year and a half before turning four.

I think it’s important for us to use this page to remember the things Frankie did before turning four for those of you with little ones who haven’t gotten to that point yet.  Back then, we were just so worried, we didn’t think about doing anything but worry, never mind write a blog.  So as much as this website’s purpose is to give hope and spread the word, we want those worried parents to know the journey we took to get here.

We were so concerned that when Frankie was a few months into three, we took him to a pediatric neurologist (if you can call him that).  I look now and get so angry.  His office reminded me of a cash cow. He saw kids every fifteen minutes.  Frankie went in, he threw a measuring tape across the room to see if Frankie would get it, which he did.  He then said his eye contact was fine. He didn’t think it was autism, and he told us to get an MRI because there could be mini-seizures going on.  I simply refused.  And I was happy I did. With further research, we heard this doctor owned the facility which would do the MRI.  We heard he did this to everyone.  If we had only know about HL then, we could have stopped that from happening.I would have also taken the time to educate him on HL.

Yesterday was Frankie’s 5th birthday 7/24/2015. I can’t believe the change in him from last year. We hung out a lot together the past two days and it was the greatest fun. He was drawing and writing sentences and telling me all about what he was doing. We laid on a hammock in my yard and shared wonderful spoken and quiet moments together. Later when his mom was going to pick out a birthday cake with him he came over to me and said Mema will you come with me? This was something Frankie would never have said a year ago, not that he didn’t want to, but didn’t know how to. For me this was the greatest birthday present God could have given him, the power of conversation. If you have a hyperlexic 3 child I hope our pages will encourage you. Dr. Treffert is a wonderful man who encouraged me and everything he said is beginning to come true for my Frankie.

So many times I find myself just sitting and thinking about Frankie’s progress in the past year. He will be five the end of this week. I am Frankie’s grandma { Mema to Frankie }. I watched him everyday while my daughter, his mom, went to work as a high school teacher. Saying that, her specialties were more of the teenage years. When he turned three years old, one of my favorite ages with my own children, I couldn’t wait to have conversations with him. All those words he knew and there were so many, I wondered what were they doing in there? When if ever are they going to come out and form a question, an answer, anything. I asked the speech teacher such silly questions. Will he be able to drive? Will he be able to get married? Ever hold down a job? After finding out about hyperlexia 3 which fit Frankie like a glove I had more confidence that he would. I then let him do what he loved to do, read, read, read, echo our words over and over without the same fear I had before. His language progressed from the time he turned four which is typical for a hyperlexia3 child but there were still no questions. When he was about 4 yrs 6 mths I was going out and Frankie knew it. He gave me the biggest surprise when he asked me for the very first time, where are you going Mema? Those were some of the sweetest words I ever heard. Yes, Frankie was going to be ok!.

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