Wonderfully Made Moms

This is the name of a new small bible study group that we are starting come April for mothers of children with special needs. Mrs. Cindy Evans, a godly, kind woman from my church is the one who spearheaded this new much-needed group for the moms who can get stressed while caring for a special needs child (let's be honest...any other children, too!). Mrs. Evans and her husband have also had a successful ministry called Wonderfully Made that reaches out to and ministers specifically to special needs adults in our area through fellowship and biblical teaching.

Mrs. Evans is a mother of a Trent, her grown son with Down Syndrome. He is a kind, intelligent, hardworking young man who helps out in our church by taking care of the sound ministry and taking offerings. He also greets everyone with a smile! Mrs. Evans has her own blog if you would like to visit it sometime!

A few months ago Mrs. Evans approached me about helping her out with this, and I was so elated! This kind of ministry has been something I have wanted to do for some time now, but I wasn't really sure how to go about it. No doubt it is the Lord providentially bringing us together to work together in this ministry.

Recently I have been writing questions that I have been asking God through my journey of raising a child diagnosed with autism. I remember when Kaylee was first diagnosed I was looking everywhere for a book that would help me along this road...but every book I found (yes even Christian ones!) were only about "curing" my child and not how I was to live in it! I had so many questions and I felt so alone. I wished I had an experienced friend to help encourage me along.

That is what I hope this group will bring to other mothers in a similar situation. My prayer is that we can help each other along and bring hope to others. To be a friend and lift one another up in Jesus Christ.


Here are some of the questions we hope to answer and address:

• Supermom or not???


• How should I discipline my special needs child?


• What does God expect of me?


• How do I cope with my fears and worries associated with raising a special child?


• Should I homeschool my child? How do I go about doing this?


• and more...

Are you a mom struggling in raising your special needs child? Are you someone who has some suggestions for what we can discuss or how we can help others?

I would love to hear from you! Please email me at jlhank80@yahoo.com or leave me a comment. And if you know a mom in the Chicago area who is interested in this small group, please send them my way!

Happy Birthday to Joey!

Mr. Joey is 2 years old today!

For his birthday, he wanted his daddy to lay in his teeny tiny bed with him...

Happy Birthday, Joey...March 23, 2007 was one of the best days of my life!

What I have learned about IEP's

For any of the other mom's out there who might benefit from this information about IEP meetings:

1. No matter what you say or request, the "professionals" have made their decision about what your child needs and they will not change it until they deem so...

2. If you have an extra request that costs them extra $$ you better have another "professional" opinion to back you up (such as a doctor, therapist) and even then you should still have a lawyer.

With all of that being said, I am still very thankful that Kaylee has a chance to be with teachers who care about her and understand her disability. I am grateful for a school system that even cares at all about my child with special needs and continues to accomodate her...

I have an aunt who is mentally disabled and years ago they just stopped her schooling because they deemed her incompetent. She didn't even get past eighth grade.

In another country my child would be forgotten and I am grateful for the resources God has provided for her, even if I feel they are not enough.

Dan and I decided that we are not going to "fight the system", but work as hard as we can with her at home and we hope that her getting better physically will be the biggest most worthwhile action we take on Kaylee's road to recovery.

Kaylee's teachers told Dan and I at the meeting that they were impressed with how well Kaylee is improving, and so quickly. As I mentioned before, once we started the NIDS Protocol, Kaylee flew through her IEP goals and objectives in just over 2 months. That was after having them for 6 months prior. Things seem to be clicking for her now.

So for now, I am thankful and not at all angry about not getting what I wanted for her. I believe that God knows exactly what Kaylee needs.

IEP Day

Today, in about an hour, is Kaylee's IEP(Individualized Education Plan). I am hoping and praying that I have wisdom and kindness while working with Kaylee's IEP team. I have been upset lately after doing some of my own research of the FAPE (Free Appropriate Public Education) Act. Kaylee is not getting an appropriate education by any means. Her school's main objective (as evidenced by her last IEP) is to simply "mainstream" her so she fits in. She gets the bare minimum in services.

Well, again, I trust that my Father will give me wisdom and words so we can help Kaylee be an independent, useful lady who participates and contributes to society.

I will update soon!

The GF/CF Diet...How and why we got started

After Kaylee was diagnosed with autism I got to researching. I read lots and lots of books and found a lot of information on the Internet (much of it conflicting...none scientifically proven, but that's a whole other post) and I don't remember where I heard of it, but I read one of the must reads for autism moms: Unraveling the Mystery of Autism by Karyn Seroussi. Before I read this book I never knew that autism was something kids could recover from. I thought kids were born autistic!

In this book, Karyn Seroussi talks about one of the first interventions she implemented for her son was the Gluten Free/Casein Free diet. This diet is one that excludes all wheat and dairy.

The standing theory is: when our children with autism eat these foods they can become chemicals like drugs that can fog up our children's minds and/or trigger their immune systems. This could be due to the 'leaky gut" syndrome, but nothing has really been proven as far as I know. But one thing is for sure, it has helped many children with autism either recover or at least improve their condition.

Now I was glad that there may be hope for my little girl when I read that, but I wept with an overwhelming fear and trepidation, "how am I going to do something like that????" I was expecting my third child at the time and I had a 2 year old and a 4 month old. Where would I find the time to cook all of this stuff? And what if she didn't eat it?

I believed that Kaylee was a definite candidate for this diet, pending her constant diarrhea, pale sickly look, and her underweight body seemed to be reason enough for me to take this step, scary as it was for me.

First, I took out the milk and replaced it with soy milk. She seemed OK with that.

The wheat? That was the hard part. If you want to go gluten free and you don't have much money (like us), you have to cook from scratch. That's what I did! I found some recipes online to replace what Kaylee's "usuals" were and I haunted the health food stores.

At first, Kaylee didn't like her new diet. I remember when I put the first GF/CF chicken nuggets in front of her. She wanted her Tyson chicken nuggets. She gave me a puzzled look at first and then proceeded to ignore them. I didn't fight her about it, I just let her from out of her chair and eventually she became hungry enough to eat them (this was at dinnertime) and she still eats them today.

After a little time on the GF/CF diet, I noticed that Kaylee's speech increased, and her poops were better, but still not normal. I was disappointed with her lack of growth. I heard of stories about people's kids speaking sentences after their child's gluten-and-milk-induced fog lifted, but such was not our case.

However, that is where I could lead into the next thing: the diet wasn't the whole problem for Kaylee. Later, after starting Kaylee on the NIDS Protocol for awhile I started to see that we were removing her triggers one by one: viruses, yeast, allergies. We are still working on the allergies now. It is important to know that even if your child doesn't totally show an improvement on GF/CF, you may be missing a part of the picture, but still on the right path! I believe that most if not all of our kids with autism have an issue with these foods until they become healthier.

I have been cooking GF/CF for Kaylee for over a year and a half now, and now I have a system that works for us. I will be sharing some of my tips in my next post.

Wow! Lots of blessings!

Today, I received a phone call and it was the allergist's office telling me they wanted to move Kaylee's appointment up to April instead of June! At first I was so troubled about how long we had to wait for her to see the allergist, but then I gave it up to the Lord and He took care of it. Thank you Lord! Blessing #1!

Then, oddly, I ran out of Kaylee's antifungal and she started acting better! The past 2 days she has told me over and over she loves me and she hugs and kisses me. Her behavior has been splendid! Because she isn't so upset all of the time, she is more social and telling me everything she observes. Today she said "It's sunny outside, it's a beautiful day!". She even said today, "I'm happy! I'm not crying today. I'm all done crying!" Blessing #2! It looks to me like I need to talk to the doctor about that...

And something new happened today that I don't know if I have ever seen before in Kaylee. She laughed at a joke! This is HUGE. Kids with autism (and usually Kaylee) have trouble processing abstract concepts, especially jokes. Blessing #3!

She is answering questions in a cute and creative way. I asked her today:

"Kaylee, what does a frog eat?"

She exclaimed, "A frog eats...um...chicken!"

Hmmm...I would like to see that one!

Yet Another Mountain to Climb

I can't believe it! All of my kids are sleeping at once! That never happens...it's nice.

So while I have this free moment I know there are other things I should be doing I wanted to give a quick update about some new developments in Kaylee's treatment.

I have discovered after talking at length with the director at the NY clinic that Kaylee has an allergy problem that needs to be resolved by consulting with an allergist. She told me that Kaylee is one of those 5% of children that have greater issues than most.

*Sigh*

The allergist is 70 miles away, which is great. But now I have to wait until June 8th to see him! That's 3 months away! I cried (there I go again!) when I got off of the phone at their office. I wish I didn't have to wait to get Kaylee the help she needs so badly.

*Sigh again*

Kaylee is doing great if she feels well. IF. If her allergies are bad we have severe behavior problems with her. I just can't figure it out.

But not only is our waiting a problem, but we have to pay for all of her treatments completely out of pocket, and it looks like it will cost us at least $2000. We are already stretched so thin. I don't know how we will do this but we will trust the Lord to provide. He always has been faithful to us. We have seen Him provide miracles for us.

About the treatment we will be doing, it is called sublingual P/N (Provocation and Neutralization). It has to do with allergy drops that eventually help to desensitize the immune system. The nurse at the clinic said that Kaylee's inconsistent behavior is related to her dysfunctional immune system and that if we do this treatment it will "change our lives". I think she is right.

Uh oh, I think I hear one of the kids! So that's all for now. Please keep us in your prayers! We'll keep you in ours :)

When a Mom Can't Make It All Better

Tonight, I cried...

Most people would think is was about something silly. On the surface, it sounds so...

I cried because I couldn't give Kaylee ketchup with her dinner.

Kaylee cried, too. I know it wasn't about her not getting her way; she was wailing with grief and disappointment. All of the things she couldn't have were adding up on her. For months we have told her "You can't have this" and "you can't have that", slowly taking away all of the foods she loves.

So far we have cut out wheat, milk, egg, chocolate, soy, and most of the sugar. And now, her beloved ketchup.

As she cried I went to her on my knees and cried with her. Inside I understood and felt her pain with her. This poor girl. She is so strong. Who knows what she feels and what she is going through?

And there is nothing I could do to help her pain but hold her and apologize. When I went to her and said "Kaylee, I am so sorry." and held her, her tears soon subsided. But inside me I felt this horrible grief and it won't go away.

It is an agonizing thing me to feel, to watch and know my child suffers and not be able to do anything about it. For over 2 years I have watched Kaylee suffer though autism with sensory issues, anxiety, blood draws, yucky medicines 3 times a day, unable to eat what others eat, loneliness, being misunderstood.

All of these things for a little girl to handle. When I really think about it, I could despair.

So tonight, I laid in bed with her and I prayed over her and told her "Kaylee, I am so proud of you. You are so strong and sweet and I love you so much. God loves you, too and He is taking care of you and giving you what you need to get through this. Someday I know you are going to do great things for Him."

I don't know if she understood me, but I understood in my heart. She is in God's hands and He will care for her, He gave her a Mommy and Daddy who love her enough to do what is right even when it hurts, and will love her and help her through. We may not be able to fix everything, but we will be there.

That's right. He knows exactly what she needs.

Weeping may endure for a night, but joy cometh in the morning. Psalm 30:5

And God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away. Revelation 21:4

A cookin' fiend!

That's me lately...I have been burning things up in the kitchen. My wonderful husband was my hero and helped me late at night, too. (It's really hard to cook while holding an 11-month old.)

Last night we made Gluten free/Casein Free Meat Puffs. I didn't want to put a picture of them up here because they look gross! They taste awful too, but Kaylee loves them and we hide beef, carrots, sweet potatoes, and zucchini in them.

The night before that we made a bunch of GF/CF/Soy free/Egg free pancakes, too. Then I freeze them, because it is so convenient (and necessary!) to have stuff already made and ready to pop in the microwave.

The reason for all this cooking is that I am yet again cutting another ingredient from Kaylee's diet because I have to be totally sure there is not a food allergy going on and that ingredient is soy. And soy is in EVERYTHING! So basically I have to make everything she eats from scratch now. But that's ok. She's more than worth it!

Dr. Russell didn't tell me to do this, he told me he doesn't think her diet is the culprit here for her allergies and the return of her "bad poops". I think he's right but I need to be totally sure. I will be finding more out about that very soon, I believe.

So that is all for now...May God be with you!