Happy NEWS!!!

DSPD (Department of Services For Physical DIsabilities or something like that) contacted me. We have been on their waiting list for over a year now, I think and will probably be on their longer BUT we got word that we will get a one-time respite offer. We get allotted a budget for respite care for Isaac to use throughout the year. It is going to be wonderful! People will come to the house or we can bring him to a facility where people know how to work with him, offer therapeutic services, and watch him for "free!" I am so excited for this opportunity and hope that it works well for Isaac and our family.

Did I forget to tell you?

It's been probably a month or two, but I don't think I posted about Isaac falling on the cement flower bed corner while walking around. He scraped up his nose and I thought for sure it was broken. I don't think it was....but it wasn't pleasant. (We missed Millie's dance class that day and I locked my keys in the car...it was a good day...) He couldn't wear his glasses for almost a week.

After that incident about a week later on the 4th of July he got kicked in the mouth by his cousin on the swing. Neither of them understand the concept of swinging with people around. We went to the emergency and he had two chipped teeth and a slice in his lip, but no stitches or anything. We had them look at his nose then, too. We have to pay so much, might as well make it worth it!

Poor little guy.

I think he is tough, though because he probably hits his head at least five times a day every time he has a tantrum...wow...that's a lot of tantrums.

Isaac's First Sleepover

About a month ago Jeremy and I decided to go on a backpacking trip. This was my first ever! We were worried how Isaac would do. He frequently wakes up at night even though he is tired and has fits. (Like having giant, loud, newborn) That's another story. Anyway we were worried about having him spend the night.

I am happy to report that he slept better than he usually does and all went peachy! He even ate what my sister cooked for him (Hallelujah). Half the time he only eats cheese and fish crackers. Oh, and avocados, thank goodness.

Jeremy and I were alone in the middle of no where and had a moose stay the night with us, but other than that? Good times, good times.

Progress: He's at it again!

Isaac is saying more words every week it seems. Here are some newer ones:
Bob (He loves that book and the way he tries to say it is adorable)
Go! (His face gets really long to make the o sound just right...again, adorable)
Ball (He only said that one once, but it was awesome)
Movie (Says more consistently now and has a fit when I tell him not now)

He is starting to go down stairs better with help or a railing. It is pretty worrisome to watch, though, ha!
But, he is a champ going up stairs. In fact! (Brag moment here) We were at the park the other day celebrating a birthday with family members.
 Before I knew it Isaac was a quarter way up the playground stairs, so I just watched. He made it all the way up all by himself AND he was able to maneuver to go down the slide. ALL BY HIMSELF before he is even two! This kid is a champ!

I can't tell you how proud I am of our little Isaac. He overcomes so many challenges. What an inspiration he is to me.

Another thing I love to see is that he is actually playing with toys now. Before he just ate them, ha. He now knows how to drive cars, play with little animals, and throw a ball back and forth. The more I work with him and the more repetition he has, the better he picks things up. (same with words) It's amazing to watch.

He uses a spoon more often with encouragement and continually gets better at maneuvering it just right into his mouth. My favorite was when he ate ice cream the other day. Now that's a good motivator. I need to get more pics up!

"Are You Going To Have More Kids?"

"Are you going to have more kids?"

That seems to be the golden question these days- and not just for me. As a carrier of a genetic syndrome it gets complicated.

Jeremy and I weighed adoption but still do not feel good about that.

Jeremy and I weighed the option of InVitro Fertilization (IVF), but the cost, time, and all that goes into it was a bit much- at least for now.

We even thought about having another one of our own but the consequences were hard to face.

So....

We had a yard sale yesterday.
            A BABY yard sale.

Yup. I did it. It's all gone.

The cute little dresses, the blue robe with bunny slippers, the hats, the booties, the little shoes, the lacy bassinet...everything. Gone.

Unfortunately the yard sale didn't go so well. (I don't recommend them. So much work for so little return). So we gave some to people we know and the rest to the good ole DI. I hated it.

However, I just told myself that This isn't a hysterectomy! I can still have more kids later. And that pretty much got me through sorting all of the baby things.

It's weird to think that at age 25 I already have a 3 1/2 year-old, an almost 2 year-old, and...I'm probably done.

Now, don't get me wrong. Jeremy and I are not closing doors completely, but at least for now or any time in the very near future. And I think that's okay for us.

The day of the yard sale I learned something. Instead of waking up in dread and mourning thinking about why I'm having the yard sale, woe is me, etc. like I might typically do, I woke up with gratitude in my heart. I couldn't wait for my children to wake up and, when they did, looking at them-I was amazed. I love them SO much! They are perfect.

I won't lie. Isaac has put a whole new spin on life but I cannot help but just hug, squeeze, and kiss him at least a dozen time a day. And with the glasses on? Please! Who could resist. :)

All I have to say is life never turns out the way you thought it would, but it is good and there still is such a thing as a fairy tale.

Another thing I have learned throughout this whole process is that you truly cannot judge others for their decisions to have more kids, to not have any, to have one or two.There is a reason why it is typically a touchy subject.  That is a decision between husband and wife and God.

Issac Goes To Ferron

We went to the annual Fowler family reunion. Issac did had a lot of fun and wore us right out! It's always hard camping with little kids, but family is worth it!

Fragile X Racer

Grandma Judy bought this car that we now own. This may be the only car Isaac ever drives. But it would be cool if one day he drove a real one of these:)

Survivors And Respite

Jeremy took his Deacons on a week-long fifty mile hike. It was quite the trip, but everyone made it...including me and the kids! This trip went much better than the Mexico trip because A) I had Autumn to help me the whole week B) I had school to keep me busy and give me a break C) I'm on Prozac! ha ha

I am so grateful Autumn came down. I am especially grateful for any respite. From this camping trip, out of the kindness of their hearts, several ward members pitched in to give us a gift card to a Outback Steakhouse. The night we had respite for Isaac, my sweet neighbor watched Amelia, and Jeremy and I went on a date. A real date-ya know, without the kids, alone, you get the picture. It's been awhile, so it was extra fun:)

So way to go survivors and respite volunteers!

Making Pizza

This was priceless. Issac loves to hit things and so this was perfect ha ha! One day he will be a professional drummer....or maybe a wrestler...hee

Happy Father's Day, Jer!

 Isaac had so much fun at the park with Daddy. He couldn't stop smiling. In fact, he drooled he was laughing so hard. Daddy swings him A LOT higher than Mommy;)



                            HAPPY FATHER'S DAY!!!!!

 Daddy took off work early the other day so that we could go to This is The Place Heritage Park. It was lots of work, but lots of fun:)

Timothy Green kind of day

Today was a Timothy Green kind of day. Discouraged about where life is going, Jeremy and I had a conversation on the way home from our in-laws.


(I once told Jeremy he has to give me another kid or a dog sometime soon. ;)

I found a cute female Siberian Husky online for $500. So we decided to get it. Why not! It is so cute and cuddly! Jeremy was all for it.
"It can be my lap dog!" he said.
"Yeah, and it can run around in the back of your new pick-up truck!" we laughed.
"Call them up. let's get it!"

"Yeah, and we will need a fenced yard. Well, we have to take out more student loans now that you don't get FAFSA anymore, let's just go li
ve in the house we want for 800 or more with three bedrooms and two bathrooms!" I said.
Yeah! And a wood shop, and a blacksmith shop, trees, and a spot for my bees..." Jeremy rattled off.

"Why not! We think too hard about everything and then we do nothing."
he continued.
"Yeah, like getting that little three bedroom down the street with a yard." I said.
"Let's not think so hard, let's just do it! Let's just have another kid..." He said.


Then we did think-about what really is important, about what we have now. About reality.
And then we returned home in our minivan with two sleeping kids in the back and walked into our humble home.

Meeting Kate

I met Kate on Saturday morning. I was at Megan's shower. Kate is Megan's friend from her Freshman year at college. I had never met her before, but I will never forget her.

I'm  not sure how we got talking about this, but somehow it came out that she has a sister with special needs and I have a son with special needs. So we talked. And talked. About lots of things, actually. It's times like this that you know you meet certain people at certain times in your life for a reason.

One of my biggest things with Amelia and Isaac is how is Amelia going to do as a sibling? Taking care of him, embarrassment, jealousy......

It was nice to talk to a sibling of a special needs child. It wasn't just a story, it was face-to-face interaction. It was honest.

She told me that her sister is so sweet and loving. They love her. She also told me that she didn't fully understand the situation until she got older. Kate realized early on that she may be the one that takes care of her sister as her parents age. She also had to talk to her husband about this before they got married.

There is also something that brings fear inside as she anticipates having her first child, "Is this genetic? Will I have a child with special needs, too?"

She said it is heartbreaking to see times when her sister is made fun of. I dread that for both of my children, but especially Isaac.

I loved a story she told me of when her little sister met another girl with special needs. She looked at the other girl, cocked her head, then just went up to her and gave her a hug. They both knew that they were different and therefore the same. She doesn't usually go up to people and hug them, so the family knew there was a special connection there.

I then told her of my experiences with having so many around with FXS. I told her the story of when I broke the news to friends and family that Isaac has FXS and when my nephew got so excited that he had another boy in the family like him:)

Overall, it was a very neat experience I will never forget. Another experience of connecting with another person that understands. There are many out there:)

SFL 240 And the Special Needs Panel

Special Needs Panel Discussion Thoughts

I have been looking forward to the disabilities section in my parent and child guidance class since I first began. However, as the day approached I found out that the parent of the autistic child would not be attending. I was bummed. The other woman had a child with only a physical disability, not a cognitive disability.

I may have even been prideful, especially when my husband called out as I left to class, maybe you can teach THEM something and we laughed thinking yeah, what can I learn?

When I got to class I was nothing but surprised. First, I was surprised at the overwhelming anxiety I had over it. Everyone in that classroom knew that I have a child with special needs, FXS to be specific. I just felt like they were all thinking about that, especially when they talked about divorce rates being high, depression, grief, etc. I didn’t want anyone to look at me, because (except for the divorce part) I felt like I had a sign on my forehead and a flashing light saying “Hey, look! This is an open book about me!”

When people know things about me I feel vulnerable. I feel that they will look down on me, see me as less, talk about me, feel bad for me, be disappointed, or expose my deepest fears and failures. Obviously, I’ve changed, but it’s still there. I had a few experience in the past that taught me this way of thinking, unfortunately. (Not from my parents, thankfully!)

Anyway, I had to pray to overcome this, even though all I wanted to do was run out of the room and forget about this whole ordeal. But I knew I had to stay. I knew it would be good for me, even more so than for all the other people in the class.

So I stayed. I connected with the mothers. I felt their pain and joy. I understood. I could put myself in each situation. I’d been there. I’ve thought of the things they had: missions, retirement with a cruising buddy, etc.

I ended up crying at one point pretty good. There was no use keeping it back anymore. It was when one of the surprise panel members talked about her child that is in a wheelchair, he is three and still needs to be fed, he can’t hear hardly anything, and he can’t talk. She had three children before and one after this son.

Afterwards I thanked the two women and said hi to each of their sons. I explained that I have a child with FXS. I asked how the one woman had courage enough to have another child after her special needs son came along and how she does it with five kids! Whew. Long story short they had heard about the Parade of Pumpkins, one knew my sister, Rachael, and it was a good talk. McKade even had a crush on Rachael’s daughter at Kids Who Count. Ha, so funny. I wish we could go to Kids Who Count. Sigh….anyway.

Dr. Nelson asked me to come back on the panel. I said I would be happy to but give me more time so that I’m not sobbing the whole way through. He said it was okay to cryJ And then I said I’d bring my sister along with me. I don’t know when that will be, but I think it will be especially beneficial to his class to see one closer to their age, one who has taken the class, etc. Plus, not many understand FXS so it will be another avenue to get things out, advocate, even talk about the Parade of Pumpkins!:)

I also found in me an even deeper desire to do a minor in communication disorders or ASL. I would love it. Anyway, when all was said and done I walked away elated. I had friends that understood. We could empathize, not just sympathize! Amazing. I have many different support groups and access to others, but this was different, especially to see that all special needs and disabilities have the same feelings, grieving cycles, etc.

And this? It's a picture. Random. Just thought I'd break up all that text. Whew. Totally worth it, right? HAHAHA

SIBLINGS

There is a new sibling page on the National Fragile X site. I was so excited to see it! I even shared it on Facebook even thought not many of my other friends would care that much. Ha. Sometimes I just gotta shout to the world when I am happy!:) Because I'm happy, clap along if you feel like happiness is the truth, hey, hey, hey

Happy

Happy

Happy 

Happy

Huh...wha? Oh, yeah....

I have struggled to deal with how to treat and teach and understand Amelia as a sibling to Isaac. She is not a carrier or anything. It helped me understand. That's what I needed. I hope that understanding and the knowledge I'm continually gaining on child-rearing will help and lead her in the right direction. This is my hope. And I hope that she will watch over him and be his friend and protector. I hope that she will not feel too burdened, embarrassed, hopeless, or guilty.

Hope and Doctrine

My classes at BYU are different because we are able to combine religion and secular knowledge. That is why I feel that my major in human development/family studies here is so great. I never thought I would go to BYU, but tah dah!
Sometimes disabilities/special needs gets brought up for various reasons.

To make a long story short this is what I have to say to my professor:

DON'T. YOU. DARE TAKE AWAY MY HOPE.

It may have come across to me differently than everyone else, seeing that I am the only one in the class with a child with FXS BUT I knew it was coming so I braced myself. Anyway...

There is too much that we do not know about life before and life after. We know what we need to know, not all we want to know. Here are some questions I have about children with disabilities: (I'll do some more studying of course, but I'm venting...)

Were they predestined to be in the bodies that they are in?
Why did they receive these bodies? Since Jeremy and I are the ones that made Isaac's physical body, what does that say....
I always hear that those with special needs have a straight ticket to the Celestial Kingdom, but my question is how do we determine how severe the need is that this is so? Is there some magic line? I believe, regardless, all people should be reared and taught in the most optimal way.
Is it bad to have InVetro? Do I not have enough faith?
Was I silly to have my own children on "faith?"

I could go on. There are a lot of things I don't know and a lot of questions about special needs I may not ever know in this life.

However,
This is what I do know.

Isaac is my son. Amelia is my daughter. I love them equally. They bring such immense joy into my life and the lives of others. All I need to worry about right now is the basic principles of the gospel. I keep praying. I keep reading the scriptures. I keep enduring.

And ya know? Enduring isn't always that bad. In fact, sometimes I just thank God that this life isn't over yet because it is so wonderful. I feel at any moment it might just slip away, and then my heart is filled with gratitude all over again.

Alike or Different

Each child is different and special in their own way. That's why it is weird when you suddenly realize that because your child has FXS he is actually a lot like a ton of others. Not that Isaac isn't individual, don't get me wrong; but there are things he does that are a part of him I love. Yet, I see other kids with FXS and think, "Oh my goodness! It's like I'm watching Isaac!" Now I know what my sister means when she says Isaac reminds her of her son. At first I just told her I don't see any resemblance. Now I understand.

The first time I really noticed this was while I was watching a video a mom posted of her little boy with FXS. He was doing all the hand flapping, absent minded walking, and so forth that Isaac does. It was weird! You would think I would know to expect this, but it is still weird. I imagine those who have children with down syndrome feel similar because they also have similar physical characteristics. It just fakes me out.

Glasses!

Well, ladies and gentleman...drum role please....Isaac now has glasses! It only took us two weeks to get them ha. And as expected he will not keep them on. However, he sometimes wears them, so that's good. We are continually trying to help him. It is hard because we do not really know if the prescription is right and there is no sure way he can tell us. Here's to hoping.
He has another appointment in four weeks to see if everything is good. The pediatric eye doctor said there were other options if the glasses don't work, but I'm skeptical about anything else.
Also, they are worried that Isaac may have a tumor behind one of his eyes, but hopefully it is just an effect of him being far sighted and not an actual tumor. I told him he already had a brain scan not too long ago and they didn't said everything looked normal, but I'm sure he will have me do another  one. Joy. At least our insurance pays for those because there is no coverage for glasses or eye doctor visits. Joy.

Well, that's that. I'll keep ya'll updated:)

Old McDonald Had a Farm

I have tried to read Isaac books with animals/animal sounds for awhile now in hopes that it would help his speech. He never really gives me cues that he is learning; one day he will just surprise me.

TODAY was the day! When I was reading an animal book he said,"moo," "neigh," "baa," and his own version of a puppy sound. It was AWESOME to say the least. One proud mama.

On Mother's Day he said, "uh oh," which was the best present I could have ever gotten from my little boy.

I am SOOOO proud of him! He is learning and progressing and I know he will continue to overcome many challenges in his life.

A Dream, A Reality

I had a dream a while back. It was awful. All around me were wounded people. It was a gory scene. One was in a full body cast on a wheelchair. others had open wounds. No one was whole.
I woke up disturbed, but soon realized this dream was more like a vision where Heavenly Father was trying to tell me something-a few things.
Just as Elder Holland said in General Conference Oct. 2013, if you have a broken leg, you go to the doctor. There is nothing to be ashamed of.

The Good Samaritan-Image from lds.org

What I learned
1) I was suffering from depression and anxiety. I got a priesthood blessing but it was much later that I also got the medical help I needed. Elder Holland suggested that our Heavenly Father would expect us to do both when needed.
2) We are all wounded whether by others, sin, trial, infertility, wayward children, etc. we just can't see it readily. And most hide it. But if we could see it, we would all see what I saw in that dream and would be more willing to help those in more serious need-spiritual.
3) I know that we are surrounded by others to help each other. We need to help each other!Sometimes we need to do that by being a friend, getting to know someone, complimenting, encouraging, etc. This is the stitching up, a band-aid here and there.

For example, I got a band-aid from my mom when visiting me each week.
A bandage from my neighbors helping with kids and just caring about me.
              Jeremy stitched me back together again after we found out Isaac has FXS, special needs.

Well, the truth is we all have special needs.
However, the true healing comes through Christ and the enabling power of the atonement.

"Lord, I believe. Help thou my unbelief."
“Our whole family is pleading. Our struggle never ceases. We are exhausted. Our son falls into the water. He falls into the fire. He is continually in danger, and we are continually afraid. We don’t know where else to turn. Can you help us? We will be grateful for anything—a partial blessing,  a glimmer of hope, some small lifting of the burden carried by this boy’s mother every day of her life.”

I know that one day we all will be made whole, complete, healed through our Savior, Jesus Christ.

Millie, the sibling:)

You would think that having a typical child would be easier than having a child with special needs, but sometimes I wonder....

Battery operated Easter Train delight. (Best 2.99 ever)

Millie is a doll. She needs a lot of love, time, and attention (like all other kids). At this age she does not understand that Isaac gets more attention because a) he is younger and b) he requires more attention because of his circumstances, aka FXS.

It is hard when she talks like a baby because she thinks it will get her more attention like Isaac.
It is hard when she refuses to potty train...because Isaac is in diapers?
It is hard when they fight-literally-for my attention.
It is hard when she misbehaves because Isaac is getting more attention.
It is hard.....

BUT

It is good when she tries to help him eat
It is good when she gets him a toy when he is upset
It is good when she quiets him to sleep
It is good when she wants to hug him and give him kisses
It is good...

Sometimes I just don't know how to address the hard stuff. So I pray for inspiration and gifts, I study the scriptures, I go to school, and I just....keep....trying.....
I know I need help as a parent, so I'm looking for it:)

Jeremy AKA Mr. Mom

Who's this handsome, backpacking, woodworking, hard working, camping, scouting, Mr. Mom? Oh, that's just my husband, Jeremy. I'm in love:)

Now that I am going to school Jeremy has picked up on some of my more motherly tasks. He bathes the children, gets their dinner (I usually have it prepared, but he sometimes cooks!), puts one (sometimes two) to bed, and cleans up. I know, right? Score!!! Thank you, Pam, for teaching this man the way to do it. I actually think he is better at cleaning and other things than I am...

So this is just a shout out for Jeremy for being amazing. Thank you, thank you, thank you!!!!!

And thanks to my mom and other family members showing their love, help, and support while I try to finish my degree at BYU.

PS, he made me breakfast this morning (waffles, strawberry puree, and whipped cream-my favorite) and MADE me this great card.

Becoming A "Professional Parent"

Many of you may not be aware of the realities of raising a child with Fragile X Syndrome or any type of special need. Sometimes parents just can't do it or are not willing to. However, no parent does it alone-it takes specialists, therapists, family, friends, etc. No parent raises ANY child alone, really.

There is something called a "Professional Parent." They are paid to take care of other people's children. Typically this type of situation only happens in more extreme cases. It is similar to foster care but these parents are specially trained, etc.

So why am I telling you this? No, we will not be doing professional parenting. Wanna know why? Because I'm becoming the Professional Parent of Isaac! Yup. Me. Let me explain.

I never want to give my child up.
Ever.

But sometimes I do get fearful.
                                             ...Until faith kicks in.
You see, I started school again.
I know. Cool, huh?

It's been over four years and I am going to BYU. Yeah, the place I never thought I would go, never wanted to go, some things still irritate me,.....but that's where I am. This is where I am supposed to be. How do I know?

After four years of trying, a handful of school searching, looking at different minors, etc. etc. this actually worked out. It was still hard. I still had obstacles that made me think, "I'm doing this!  I don't care if I sent you the wrong paper, if I had to call because you made a mistake, if ...." and then I calm down and thank Heavenly Father that it worked out, realizing the only way I could really know that it was right at this crazy time of my life was through the trial and error.

My new desk/book case I'm in love with. Thanks Mom!

So why do I say Professional Parent (somewhat sarcastically)? Because I am studying Family Life with an emphasis in Human Development and (hopefully) a minor in Communication Disorders.

Some may think...seriously? The Mom Major? The easy major? The pointless waster? Think what you will. This knowledge is power.

Where is the world failing most? Family life. What proclamation came out in 1995 by the Church of Jesus Christ of Latter-day Saints? The Family: A Proclamation to the World. Why is society hanging by a thread and so much confusion? Disturbance of the true family life! I will defend my major, but mostly
                                                                                                        I will defend family.

From now on I want to be a sharper tool in God's hand to promote the wellness, sanctity, and power of families. I want to be a light and pillar for my community, my family, and the Church.

We all need to know how to defend families. We all need to know the facts.
As my Professor says, "You have to speak their language." When you go to a foreign country, you learn their language or else they will not understand you (with the exception of the gift of tongues, of course:)
When a non-member, atheist, researcher, journalist, etc. asks you why we do not support gay marriage, etc. do you know how to respond and why? Do you know how to speak their language so that they will understand and be more accepting?

Off the soap box.

Visiting Uncle Joel at work. Go John Deere!

.

Working With Isaac

 Needless to say, no one can do what I can do for Isaac. No one will do what I will do for Isaac. I am his professional parent. I am his mother.

Teaching and having fun: cleaning time!

No one can show Amelia that she is a daughter of God like I can. No one can show her that she is wonderful just the way she is like I can. I am her professional parent. I am her mother.

The best daddy and hubby with his son

I am Heavenly Father's daughter. And together (with my amazing hubby!) we can do this parenting thing!

Changed Perspective

I remember in high school some of my close friends worked with the special needs kids in the school. I always respected them a lot for that but knew I couldn't do it. I always felt uncomfortable around those with special needs. It was always awkward for me.

Maybe that's why Heavenly Father sent one of those special spirits to me.

Now I can learn first hand how they are to be treated.

I'm not saying I'm smooth, cool, and confident around others that are different, but I do understand.

If there is every a child with autism, down syndrome, etc. that approaches me or that is around me I make it a point to not be afraid, to be understanding, and to talk to them like everyone else.

Now I understand that with each interaction there is a parent who is happy inside. Just like I will be happy if my son has friends, is accepted, etc. Just like I will be happy if a high school team lets him be on the football team, if a close friend takes him along for a triathlon, etc. (Not saying I can't be happy now:)

You hear lots of those miracle stories and now I my hope for the future is something similar.

All I know is that there is no person that is greater than another. We are not greater over children, people with special needs, others with more obvious sin-we are all spirit children of our Heavenly Father.

Everyone with special needs-they are there. They are in there. There is a wonderful spirit in them. 

What a valiant spirit that would choose to forego all the wonderful things to enjoy in this life to remind us that the point of life is not to see all the 7 wonders of the world in travel, to climb the social or business ladders, but simply to gain a body, to live, to love.

As we come upon Easter and the celebration of the glorious resurrection of Christ and his love for us, I cannot separate the wonderful thought of my little Isaac, of all with special needs and disabilities (which in one way or another includes all of us) will be perfect in mind and body. I can't wait to meet him, my cousin, my nephew, my nieces all as their full selves, stripped away from the imperfection. An imperfection here that is only making me more perfect for the life to come.

Because of Him we will be made whole. My little Isaac.

Let's Get Personal

As parent of a child with Fragile X I have to realize that I am a Carrier. This means more than you might think.

Here are some things I have to worry about:

-Depression

-Anxiety

-Pregnancy/Child options

-Premature Ovarian Insufficiency (FXPOI)

-Tremor Ataxia Syndrome (FXTAS)

-ETC!!

I have found that being more open is best, so although I don't want to get too personal! You are all my friends, right!!!:)

In  addition to thyroid problems, I have been struggling for a long time with anxiety and depression, which has recently reached its peak. I made the difficult decision to go to my doctor for help. Back in December a doctor told me that if things didn't change (heart racing so bad it shakes my body, shaking hands, etc.) then I need to be on Prozac or go to counselling. Needless to say, that was the worst visit ever.

So this last time I made Jeremy come with me and we went to Dr. Hyatt. He is my friend's Dad, so I trust him and feel more comfortable going to him. I cried the whole time. I mean, this isn't me! I'm happy! I don't need medication! I hate medication!

Okay, I'm on medication. Prozac.

But let me tell you! It has been a blessing. My family life, personal life, marriage, motherhood have changed for the better. In fact, one of the biggest reasons I took myself into the doctor for help is so that my daughter could have a better mother. She deserves a mom that is happy, kind, not ornery all the time, less anxious, etc. so that I can teach her more by example.
We'll see how the counselling part goes.

Okay, enough of that.

Next...

Everyone was wondering if I was pregnant when we got the van and bunkbeds...

I wish I was...

It's really hard as a carrier of a genetic syndrome to have faith enough to have children. Since having a child with Fragile X and truly understanding just what we are doing....it has been harder to be faithful.

But I want another child. SO bad. 

In vetro fertilization?

Adoption?

Another child of my own with the possibility of FXS?
No more children.

SO this is where I am. Where my family is right now with FXS. IF you wanted to know:)

Knock, knock!

As you know, we have been focusing on Isaac's communication, both receptive and output. He hasn't really said many legit words. I wonder sometimes if he knows that "Mama" is me or "Dada" is Daddy.
I haven't had much success with sign language or the speech button. I just don't think he understands why these things connect with what he wants.
The next thing I want to try are PECS. These are pictures he will use to tell me what he wants. I will also do this for routines.

SO...the big news is....drum roll please....

As we were playing yesterday, he was banking on the kids table with his fists, as he often does, and I randomly said "knock-knock!" and knocked on the table, too. He looked at me and thought about it and then I said it again. All of a sudden he said it! Okay, so it wasn't KNOCK KNOCK. It was more like Dot dot. But we did it over and over and I know he understood. I liked to watch him think about it and try to do the "n" sound.

The best part was later after we did it several times at the door. He was riding on the rocking horse, knocked on its head and said, "dot dot." I clapped and said "Yay!" Then he turned to the wall and knocked and said, "dot dot." (or however he says it:) I am so proud!!!!!!!!!!

Big break through. Things like this give me HOPE!!!

Who knew knock knock would do it?

We are also working on walking on uneven ground, up hills, and down slopes. It's going well! He is also attempting stairs whenever he can, especially when it means he can go to nursery, which he went to all by himself the whole time with a few breaks last Sunday.

Spoon It Up! And Buttons

Guess who used a spoon today!!!

ME!

Okay, just kidding.

Isaac! Pshh, who'd ya think?

It was fun to watch. He got about as much on the spoon as he did on his hand that was scooping it. But I'm SO proud of him! Hopefully we can keep this up. Sometimes he does things one day and never again. I think this one will stick if I keep working with him.

Also, his speech therapist offered an alternative language option to sign language. It is a speech button. I record my voice saying something like, "more," and then he pushes the button when he wants more. He hasn't really taken to it much yet...about as much as the sign language.

However, he is definitely improving on his babbling. He has so many more sounds and fluctuation. I have high hopes. I think he will be talking by...three. :) I try to talk to him all the time. I know I was better with Millie because I was less busy!

Doing well over here!

No More Physical Therapy! And other things...

Guess what? Isaac is progressing so well in his motor skills that we no longer need a physical therapist! Mark will still be there for questions and anything like that, but I think Isaac will be just fine. Now we can focus more on speech therapy.

I feel like Isaac understands more and more. He is such a character.

I am also starting to worry about how much he rocks. He does it on his bum scoot, of course, and when he dances:) But that's how he puts himself to sleep. Is my child going to be that kid in the corner humming to himself, rocking back and forth? :( I hope not. But...I'll love him just the same:)

This kid loves music! He is pretty good at the maracas, drums, tambourine, and cymbals:) He always calms down when we play the guitar. That and the vacuum are a sure way to stop the craziness and crying.

These two sure get tuckered out when we go to Grandma Judy's house! Cuteness. Oh, and that was one of Grandma's treasures she found us in the back seat. Gotta love the new van!

Time at the park! He loves the wood chips and I'm so proud of him how well he walks on uneven ground. He is picking himself up so well now, too.

Isaac is starting to get into all kinds of things. It took him awhile, but now he is twice the trouble! Music, clothes, books, you name it. Let it begin!

And Millie turned three! But Isaac slept through it all. It's okay, it was a total GIRL party!