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!