Tuesday, November 13, 2018

Faith versus Fear

Parenting a SATB2 child (2 SATB2 children now, actually!) can not only be scary, it can be terrifying. There is so much that I am afraid of. 


What if my child gets abused and can't tell anyone?

How will we be able to financially prepare for the future when all her needs right now are using almost everything we have?

Will she ever have real friends, not just people being nice because she has a disability?


Is she getting a real education, or is the school just providing mediocre babysitting?

Does she feel loved enough when I am constantly correcting her misbehaviors?

Who will take care of her when Derek and I are gone?

The list goes on and on. 

And those are all, real, legitimate fears. 



In church on Sunday, we reviewed the talk "Be Not Troubled". At first, as the women in my church group discussed it, I felt like many of the things didn't apply to me. 

They spoke of standing in holy places so we can feel the Spirit, and I thought, "How can I go worship when I can only sometimes find time to shower?"


They spoke of how we need to have faith instead of fear. I thought that my fears were too great to overcome.

But as I pondered about it, I realized that all these principles still apply to me, and that my faith in Christ's love and atonement is greater than any fear I could possibly have. Ronald A Rasband, who delivered this talk, said "Since ancient times, fear has limited the perspective of God's children." 


I CAN stand in holy places. Perhaps I can't go monthly to the temple to worship, but I can do my best to pray always and make my home a sanctuary from the world, and feel the Spirit's presence there. 

I CAN remember that after death, our family will be together forever, all of us whole and without imperfection. That is the perspective I need to remember when I am afraid of tomorrow. Tomorrow means nothing when compared to eternity.



Yes, my fears are very real, and sometimes seem insurmountable. It is hard to think about forever when I am scared of my child hurting right now. 

But I also know that Christ can heal any heart. I try to remember that while imperfect, I am still doing the best I can, and will continue to do so. I am not a peaceful, kind, or happy mother when I am constantly freaking out about the unknown future. 


These fears are a way for me to realize the areas of my life that I need to focus on, work at, and gain confidence in, but if I am paralyzed by fear, what is accomplished?



So as I continue to prepare for the future, I can invest the emotional energy previously spent on fear into loving my children and preparing a path forward, so that as we step forward into the future, we will do so unified and strong, ready for whatever comes our way. 



Wednesday, October 31, 2018

3-6 Month SATB2 Activities

With Lily being newly diagnosed, I dove right into therapy mode. REMEMBER: therapy isn't a bad word!!! This doesn't mean drilling all the time! Therapy is meant to be FUN and enjoyable for BOTH parent and child! Call it "engaged high-quality play time" if you want.


One of the things that doctors tell new parents is to do tummy time with their baby. It is especially important for special needs children to get in those crucial minutes, not only to strengthen their muscles, but to also prevent a flat head! 


Aim for 20+ minutes of tummy time each day, though it doesn't have to be all at once (and the baby would probably protest if you tried!). I have  even heard some OTs recommend about an hour and a half each day!!!


Here is some of what we do at home to try and let Lily achieve her potential!


Tummy Time! 


In early stages, place baby's chest on a boppy type of pillow so she can look around more easily. 



Place the baby's elbows so she is propped up. This strengthens the shoulders and back, which will be needed for crawling and (much later on) writing!


Place toys around the baby so she can start to reach for them. She will need to stabilize her core in order to lift her arm to grab at the object

While baby is doing tummy time, call to her from different sides, and show fun colorful (or black and white) objects. Turning her head from side to side is a fantastic exercise right now!


If she doesn't want to do tummy time on the floor, try YOU laying down on your back and having baby do tummy time while on your stomach/ chest


Tummy time isn't just laying on their belly on the floor! Carry your baby facing out and at varying angles, so she gets used to looking around at everything around her.



Sitting

Pull out a mirror and place it so your baby can see into it! Mirrors are HIGHLY motivating for babies, and SATB2 kids especially! I would stick Lily in her bumbo seat facing the mirror while I did my makeup in the morning.


Tummy time and time sitting up strengthens head and neck muscles and allows for better coordination. This is the first step toward "big" milestones like crawling and walking! So target this first!


A word of caution: Putting your baby in a carseat/ swing/ bouncer frequently doesn't give the baby much time to practice that head control! So avoid it as much as possible!


We have a rule with Lily that the carseat only stays in the car. No taking it out to tote her around. And sometimes, it was a HUGE hassle! And I only used the swing occasionally to let Lily take a nap in there because she LOVED her swing. But I wouldn't let her stay in it awake.

Other ideas:

As often as was possible, I nursed Lily laying on my side. This made Lily work to stay in her side-lying position, which is GREAT for learning to roll, learning to push up to sitting, coming to and crossing midline... And she started flipping over to her side very early when she would see me getting ready to feed her.


When you work out, your muscles get sore! I don't know if it actually does or not, but I always assumed that my baby's muscles would be sore too. So after baths at night, I massage Lily, just in case she has any soreness. She loves when I love massage and sing to her

Last thing- to work on rolling, I would position Lily so her arm was either up high or under her torso, then get her to look up at me so she would roll over. I didn't count that as rolling, but done frequently, it starts to build muscle memory so they can roll.


Friday, August 17, 2018

Like Feeding a Baby Bird

There was a baby bird on our patio outside our apartment today. I vaguely heard it for a while, but didn't stop to focus on it for a long time; I was so busy with my kids. After several hours, I finally went over to the window to see why the chirping hadn't stopped yet. 



And there was a baby bird, feathers just barely coming in, chirping and chirping so a parent would come feed it. It tried to fly, but was still too little. I put out some water and crumbs for it, hoping that it would eat, but it still just called and called and ignored my attempt to help.

Eventually, the daddy cardinal came back with a bug for it, and plopped it into the eager mouth. And again. And again. Each time, it had to fly away to find yet more food. As the father flew away, the baby bird chirped piteously and tried to fly after him, just far enough to a tree with branches only a foot from the balcony railing, then perched and continued to chirp.


I went about my business, sometimes a little annoyed by the constant chirping that was distracting me from my work. 

Then I stopped to imagine what it must be like to be that daddy cardinal. I thought about how much it was like raising a special needs child. 

Most people don't stop for long to think about a special needs child until you REALLY meet them. 

You go about your business, occasionally tuning out a meltdown at the store, or reading an article about a family with a special needs child. But it doesn't really hit home until...

You become friends with a family that has a special needs child. You see the massive level of demands and feel bad for the family, maybe try and help out, like how I tried with crumbs and water. 

BUT, nothing can replace that overworked, exhausted father who must have been beyond worried that their baby escaped from the nest. 

Now they need to find that baby and give it special care all while managing the other babies in it's nest. Do those other babies resent the father for being gone? Are they going hungry or not getting enough because the one bird is taking up so much of the father's energy?


So again, and again, and AGAIN the father cares for that baby bird. It goes unnoticed by everyone- the searching for food, the ache in his wings from constantly flying to find food, then return to his lost baby, then go back to check on his other nestlings. 

He worries that his baby might get hurt- it can't defend itself. He worries that the baby will die on it's own- it can't find it's own food. What if a well meaning person comes along and tries to help, but the help they offer does more harm than good? 

So even though it is beyond exhausted, the father continues to fly back and forth. 


That is exactly how raising a special needs child is. That child needs extra help, extra supervision, and extra attention. You worry MORE about that child because they don't "stay in the nest", as much as you want them to.

Maybe you will be offered help. Perhaps a government agency puts you on their 10 year long waiting list, or the school offers "appropriate" services. Maybe a friend offers to watch your child for an hour. 

As grateful as you are for those things, sometimes, it still feels like crumbs. 

So you continue to feed your baby bird, wanting to cry sometimes because of how tired you are. To the point where words cannot adequately describe it. 


When all of your body physically hurts and aches because of the level of service you have given your child day and night for years. 

When you are so emotionally spent on the constant battles fought for your child for years that you have no feeling left for yourself.

When your other children act out because they crave your time and attention and energy, but you are so depleted from your special needs child that you can't give them the effort they need, as much as you want to.

When your marriage is struggling for the same reasons.

When you wonder if you will ever be able to save enough for your child after you die, and never mind being able to retire. Ever. 

And yet, that daddy bird will never give up on his baby. Just like for my two precious daughters, I will never give up. My husband and I will continue to give as much as we can to those girls, because that is what they need.

And that is what makes a parent. 

So once again, spread those wings, my friend, and fly. 

Sunday, August 12, 2018

SATB2 Awareness Day

August 22nd is coming up, and do you know what that means??? SATB2-ASSOCIATED SYNDROME AWARENESS DAY!!!!! Woohoo!!!!


Not everyone has a lot of time, so here are some ideas for those of us who are strapped for time with the start of school and everything:

1. Take a picture of you holding up 2 fingers to represent the 2nd chromosome and post it on social media with a #ShowYourSAS hashtag!


2. Post a picture of your favorite SATB2 superstar and use the hashtag #showyourSAS (or) #mySATB2kid. Take a selfie with one of the four selfie signs and tag the SATB2 Gene Foundation. Don't forget to use #MySATB2Kid or #ShowYourSAS. Download your selfie sign today


3. Change your facebook profile to use the SATB2-Associated Syndrome awareness day border


4. Go to the SATB2 Gene Foundation website HERE to learn more about SATB2-Associated Syndrome! 


5. Join the SATB2 Gene Foundation facebook page HERE. The stellar mom who founded the organization posts cute pictures of SATB2 kids, great stories, and ways to get involved with the foundation!


For those people who want to get more ambitious, here are some other ideas of what to do!

6. Go HERE to download a fantastic information flyer about SATB2-Associated Syndrome, and distribute it to your pediatrician, school, dentist, or anyone else that is awesome and wants to learn about our superstar kids! Don't copy the picture! The download (totally free, don't worry!) is great quality and amazing!


7. Donate to the SATB2 Gene Foundation or host a fundraiser! Play to your strengths! I work part-time at a gymnastics gym, and asked them to host an open gym night with proceeds going to the foundation! Another family wanted to do a casino night, and others have done raffles. 

Families can create online fundraisers through Facebook, or explore other options like bake sales in their local community

8
. Write a letter to the editor of your newspaper talking about SATB2-Associated Syndrome. It just may get published!


9. Do a presentation at your child's school/ daycare facility! Or if your other children want to present to their class, it is a wonderful way for them to get involved in a great cause and raise awareness at the same time!


10. Try out a disability! I loved THIS idea about a person who put on a disability awareness activity, and had people "try out" different disabilities. I have attended one of those before and it was very eye-opening!




BONUS: Write a letter to a parent of a SATB2 child expressing your support. Raising a child with a disability is so unbelievably hard! It is difficult financially, emotionally, martially, physically, and affects every aspect of your life! These parents need to know that they have a village out there!

Tuesday, July 31, 2018

SATB2 Sisters


After walking the SATB2 road with Chelsea for 7 years, our family was blessed with another sweet baby, Lily, who was also diagnosed with SATB2 Associated Syndrome! My husband said that we must have done such a good job with Chelsea that we got the chance for an encore performance.



With Chelsea, our 7 year old, we had to search for years to find her diagnosis, sorting through misdiagnosis after misdiagnosis. When she finally had documented results from a genetic test, it was a huge relief to our family to have finally found answers. 



When Lily was born, I had the nurses pull cord blood to test the SATB2 gene, just so I would have some reassurance that I would have a “normal” baby. When the results came back positive a few weeks later, my emotional reaction was a polar opposite from Chelsea’s diagnosis. For the two days after Lily’s diagnosis, I felt a crushing, devastating weight unlike anything I had ever experienced before. 


But after some intense emotional grieving, my husband and I found some wonderful benefits to having 2 sweet SATB2 daughters. We had already walked this walk before, and though we still have a long way to go, we already knew a lot of what to do now: the best therapy methods, which tests were useful, and what to not waste our time on. 



Another thing we thought of- we had always worried that Chelsea would be lonely, and feel left behind, after her brother left for college, and now, she will always have a best friend to be with always. Someone who will never tire of playing tea party and dressing up in princess dresses together. 



But more than anything else, we know how incredible Chelsea is, and that Lily will be just as amazing! Receiving a SATB2 diagnosis, whether your child is 2 months old or 20 years old, isn’t a shameful or ugly thing. It is a different road, but not a bad one! These kids are kind and loving and silly, and the magic of childhood isn’t limited to just a few short years.



Just like for any parent, there are difficult days. Days when you feel the weight of the world and when it seems like the school, insurance, and the government are all working against you, and you are the only one on your child’s side. Times when you are exhausted, overwhelmed, and almost defeated.



But then when milestones are achieved, the pride you feel for your child’s accomplishments are indescribable. The first word you thought would never come, or realizing that your sweet daughter was able to remember something you thought was too difficult, showing you again and again just how much she truly can do, instead of what she can’t.



As we look to the future, with both Lily and Chelsea, we know that while there will be struggles, we get to keep our sweet, SASsy girls forever, and that they will be best friends.  

Wednesday, July 25, 2018

What is the K-SLP method?

I am a super big fan of Nancy Kaufman and her method of treating Apraxia of Speech! It has worked wonders for Chelsea's speech progress. So- what does it entail? What is this mystery method?


When we first started speech therapy, we did the PROMPT method, which helps the child learn to make sounds. Once your child can imitate sounds, they can start the K-SLP method. 
Nancy Kaufman


What does K-SLP stand for?
K-SLP is Kaufman Speech to Language Protocol. It means taking a child's ability to produce a few sounds, and expanding it until they are able to produce language


What this method DOES:

1. Targets specific sounds and words, and has the child build a sound inventory, eventually leading up to the correct production of a word


2. Uses the natural environment for speech therapy- NOT just pictures and cards

3. This is highly motivating and engaging for the child! If they don't like speech therapy, something is wrong!


4. Models correct language, even if child can't imitate it yet. Reward their best effort, but YOU say it right!

5. Uses multi-sensory cues to help child remember how to form mouth/ tongue placement to make a specific sound. (meaning: say it correctly, use a visual cue, and use tactile helps to assist child make the right sounds)

6. Repetition, repetition, repetition!!! Practice the sounds/ syllables/ words so often that it becomes engrained in their muscle memory!

7. Set your child up for success. Provide opportunities so your child can speak and feel understood, which will further motivate them to continue speaking


8. This method relies HEAVILY on parent involvement. If you want to send your kid to speech twice a week for half an hour, their speech will not improve. You MUST practice at home!!!



What this method is NOT:
  • Do not expect that if you get the K-SLP flashcards, your child will magically start talking.
     
  • If the SLP is only drilling the flashcards in therapy, that is WRONG!!!
  • This isn't a quick fix method. There will be a LOT of practice involved! At speech and at home! So if you don't want to put in hours upon hours each week/ month, this isn't the method for you