Early Intervention came today. We have a new person coming. Her name is Erin. Lauren from Early Head Start came later. I was informed that EI will now be coming two times a month for thirty minutes. That  means Isaac needs more help. That also means we are getting him the help he needs to further succeed.

I took for granted to milestones Amelia hit. They just came naturally. I have to fight to get and literally teach Isaac every new thing lately. However, it is really neat to see when things start to come together and watch him do things for himself after being taught over and over. Things that come naturally to children his age are something we all must work hard for and hope we can keep up.

They said that around eight months is when they usually start seeing delays. I have to admit that at times my hope seems very little.I've come upon other stories of children Isaac;s age doing well-right on track, but it doesn't stay that way. It was kind of a slap in the face to be honest.I brace myself for that.

Sometimes I get scared. It is said that if you are prepared you should not fear, but I don't know what to do to prepare except to pray my heart out every night and ask for help and a blessing for Isaac.

When I first found out that Isaac had Fragile X I knew everything to do. Everything was clear. I called KOTM among other places. It wasn't as easy as I thought. You have to fight and bug people to get help for your child. And then when you do get help it requires much more on your part than my naive mind first thought.

People don't just come to your house and work with your child every day and everything is fine. Of course not. They come and it is draining and then you expected to work with them every day. If I let a day go by without doing something to work with his development I feel I have failed. I feel guilty. I feel like a bad mother.

But I can only do so much. I have to live. I have to do the dishes and clean my house. I have another daughter that begs for my love and attention constantly. I have a husband. I have things I enjoy doing. I even have this blog I don't have time for. I can't spend every waking moment working on his development. Sometimes I go crazy constantly thinking of development, milestones, etc. etc.

I have a chart that helps me track how much time I spend with each child and their goals. At the end of the week I see that I don't spend as much time as I should. But I hate that I feel like I can't just enjoy time with my kids. I am constantly having to look at the clock to see how much time we spent doing this or that. And if we just have fun I feel like we need to be doing other things. It's a constant battle.

I am learning to balance things, stay sane, stay happy. I decided that Isaac is not my battle. He is my angel. Maybe it isn't even Fragile X. I think it is just this mental battle of imperfection we face very day of our lives. And the worry of what others may think or do about those imperfections.It's the battle of learning what truly matters most in this life and prioritizing our time accordingly. It is the battle to find joy in the journey of life. It isn't about getting to the end of the song. It is about enjoying every beat, harmonious chord, and favorite line along the way.

And so, I will enjoy the smiles, how everyone loves him, how those smiles make others smile, the fact that I have two wonderful angels in my home, the fact that I am being molded and perfected in this life, and holding that sleeping baby in my arms only to hear him laugh in his sleep one more time before bed.

A JOY

So I thought I would post something positive!:)
I love our children so much. Isaac has opened up to me a whole new world! So many people open up to me in ways I never would have experienced before. I am amazed at how many people have family members with disabilities. There is a reason why there are so many in the world today. I wonder if it is partly because the world is so wicked and God wants to protect his children and/or if we need them here to help us.
Isaac brings so much joy to everyone that meets him. His smile is so contagious and same with his happiness. It is so fun to have him around. Everyone just loves him. He is so cute! How could you not love him? (I know-I AM his mother, ya know).
I feel blessed to have such sweet children in my home. They can be so hard sometimes, but it is wonderful. 

Physical Therapy...Among Other Things

I have discovered that there is nothing that can describe, nor explain what it is like to have a child with special needs. One aspect that I am gong through right now is getting him help.

At first I thought that everything would be okay because I was going to get him into Early Intervention, DSPD, etc. etc. First of all, it was harder than I thought and I felt like I had to fight to get anywhere. I didn't get far with DSPD because Isaac is still too little.

I have since discovered that mainly it is up to me. As if I don't have enough stress and things to worry about! It is hard tracking how much you work with your child on his development when a day goes by and you realize you have done nothing-specifically, at least.  Like today. I didn't work with him on his knees. I didn't do this and that. Then the guilt sets in.

(But, I know I need to look at the positive. For example, we worked on sitting up, playing games, and interacting with others. "Drop of Awesomeness" for ya.)

I can't help but feel that if he fails, I fail with him, if he succeeds, I succeed with him. I guess that goes for any child, but the weight feels so much greater in this situation.


The emotional stress of everything alone leaves me ragged some days. Not to mention that Early Head Start comes once a week for an hour and a half, Early Intervention comes once a month for forty five minutes, Physical Therapy comes once a month for forty five minutes, and they also have other playgroups and such which I never make it too.

I have gone to an infant massage class to help with Isaac's stiffness, though. It was good. I was surprised at how well Amelia did in the sibling day care at that time. Again, I am so proud of her.

Occupational Therapy may not be so far in the future as well. I don't know if I can handle all of it, but I know that I have to do everything I can for him. It's just have to. And so I guess I see my life changing. Once in a while a day goes by that I don't think about Fragile X. Once in a while...

Amelia

Amelia is one special girl. This isn't the life I had always wished to give her, but I'd say it is still a good life. I can't imagine growing up with a brother who has Fragile X Syndrome. I can't imagine the things she will face. Jeremy and I know that she is a very special girl, a special spirit sent to our home. What a blessing she is. My sister often tells me how lucky I am that I have one of my children that will carry on a conversation with me, lead the way for my son, and be there for support.
I hope that she will be Isaac's protector and friend. I feel she is. I hope that she will continue loving him and seeing him like any other little brother. I have no idea what is in store for her in the future, except for the fact that it is a bright future full of potential. I am so thankful I have my little Amelia. I know she is my little angel. I don't know what I would do without her.

Okay, I have calmed down since my last post. I am still worried, however, considering many children with Fragile X have seizures. It's just scary, ya know? I feel like every time something isn't right I have to ask myself if it is related to the syndrome, or just normal stuff.

For example, lately I have had some pretty sleepless nights. My sister, Rachael, who has three kids with FXS said that at about six months she noticed sleep declining. She started giving her kids Melatonin (I think) to help her kids sleep.

Now I have to think Well, Amelia was the worst sleeper ever. I survived and now she is a champ. So...is it something I have to treat him for or is it because around this time I always have a hard time keeping my babies full (I won't go into that ;). Too many long naps in the day? Who knows.

Technically it is deemed normal at this age. Okay. So I wait it out and see. I don't ever want to medicate my child unless I have to and see it fully necessary.

The thing I see with Fragile X is that there are many things that happen to them that happen to every child: hyper activity, anxiety, not wanting to sleep, etc. but it is intensified. So I guess I will take it all one step at a time.
Every child is different, even every child with FXS.

(PS pictures and more info to come. Blogger has never been my friend when it comes to uploading anything. Lame sauce.)

Today was a roller coaster. I went way up only to come crashing down.

For the first time a physical therapist from Kids On The Move came to our home to work with Isaac. 

He told some good and bad news: He will be coming to our home once a month from now on.

This is good news because that means Isaac is doing well, which he said. Isaac is even sitting up like a pro. However, it is bad news because we only get to see him once a month and because we have to see him at all. 

He taught me four different things I could do with Isaac to help:

1   *Don’t use the Boppy pillow to help him sit up anymore. Work with him on sitting alone with toys.

2    *  Have him sit on my knees and tilt him side to side, then let him use his abs to clench back to position.

3      *Go from sitting to kneeling and back again with the help of a couch cushion.

)      *Rolling from back to tummy

    *Don't use bouncer much

I had to call Rachael because I was ecstatic. I am getting help for my son! Useful help! I can help him! I have even more hope! We rejoiced together.

Then I went to put Isaac to sleep. It had been two hours since his last feeding, so I thought I would feed him before he went down. That means more nap time, right?

Then it happened.

He began to do small little convulsion-like movements while falling asleep. He has done this twice before while falling asleep while nursing. Before, however, it was more like twitches and I just figured it was because he was falling asleep. Jeremy does the same thing. It has worried me, though. This time was different and I tried not to panic. 

After he was asleep I got online. Suddenly my feelings of knowing what I’m doing, success, hope, and all that just deflated. No, they popped.  After looking a few things up and reading a bit I looked up a pediatric neurologist under my insurance provider and wrote down the number. 

I kept telling myself it was okay. I’m okay. Then I just cried a lot. I thought, “But, this isn’t supposed to happen. Rachael hasn’t gone through this. (Maybe a little with her son) That means it’s not supposed to happen. No one has paved the way. I don’t know about this. I don’t know where to turn.”

Then I began to think again on the financial side of it all. Will we make it? Will Jeremy be able to finish school if this is something that needs immediate action?

Of course I’m praying through all of this. Now I’m taking it one step at a time. Looking at possibilities. Trusting in the Lord with all my heart and leaning not to my own understanding (which is very little). I wonder what life, and Fragile X, has in store for us next.

Lately I have been thinking of doing a blog all about my journey through Fragile X Syndrome. Today after a certain experience, I feel it will be good for me. And I hope that my family and friends will follow along on this journey that they may better understand. The first ones may be out of order or random....:)