Thursday, June 28, 2012


Its funny how God works sometimes.  You can be running in one direction, the direction you think you are supposed to be going in, and He stops you dead in your tracks...And I mean slams the door, shuts the window and says NO!  Well, thats what happened to me today and I must say it was a miracle.  Today God sent me someone who will forever change my life. 

A dear friend of mine from church set me up on what I called a blind friend date.  It was a woman she is good friends with, who has a 22 year old son with autism.  I didn't know what we'd talk about on our friend date, but I was so excited to hear from someone who had been there and done that and who might have some wisdom to share.  In all honesty, I thought maybe I'd get even more recharged to keep fighting and fighting for Jacob and hoping and praying for him to be "normal".  Well, she began to share her journey and she was explaining how in the beginning she would take her son out in public or to resaurants and always feel like she had to appologize for his behavior or that she needed to explain why he was acting the way he was acting, until she finally realized that she didn't owe anyone an explanation.  God had made him perfect just the way he was.  I then went on to ask her how she balanced hoping that he would become "typical" or "normal" with being at peace with his autism.  That's when she shared something with me that I will never forget.  She said that when her son was in middle school she felt so burdened with the thoughts and prayers for her son to be healed or to become normal.  She felt chains holding her to that anxiety and worry or the hope of him changing.  One night God gave her a vision in a dream.  She said she woke up hysterically crying and crying and immediately wrote down her dream so that she would never forget.  Her dream changed her life and will forever change mine.  Now I didn't write it down as she told me but here is my paraphrase as well as I can remember....She dreamed that her special needs son was a "normal" teenage boy.  She was in the kitchen cooking or cleaning and he walked through the room and said,"Hey Mom" in the typical teenage son kind of way with attitude and just went on with what he was doing and was out the door.  She remembers in her dream thinking that he was so different, their relationship was so different.  It was a nightmare.  She no longer had the son that she knew to be hers.  They didn't have the close relationship she had with him in real life.  She woke up from the nightmare crying because she knew God had just shown her "See this is the son you've been praying for, the "normal" son you've wanted so much.  Do you want him or the son that I have given you?"  She knew in that moment that God had given her the perfect son that she wanted. 

You see, no one can explain the bond you make with a special needs child.  No one can understand that relationship until you have it.  The son she thought she wanted was not the son she wanted at all.  God knew what he was doing.  She immediately felt those chains released.  She immediately felt so thankful for her son and everything that her son was. 

WOW. WOW.  You know, here I have been praying for a "normal" son and worrying about if I am doing enough to make him "normal" and I haven't stopped to thank God for Jacob and who he is now without wishing him to be different.  Its like I have been worrying that if I accept him the way he is and if I let go of the worry of him not healing that maybe then God won't heal him.  That's the amazing thing, though.  My wishing for him to be "normal" won't make him "normal".  Actually, if he stays autistic forever, it'll only bring deep heartache.  Additionally, my feelings don't change what God is ultimately in control of.  My feelings will only change my heart and my relationship with my Savior, Jesus.  I need to be thankful and so happy with Jacob as my autistic son.  Just as my friend said to me, I want to be able to tell God that I don't want Jacob to change.  If God chooses to change him then I can be thankful for what God does, but Jacob is perfect the way God has created him.  What's more is that I have been afraid that accepting this diagnosis means giving up.  That isn't further from the truth.  Accepting his autism means loving him for who he is and working to make him be able to function the best he can.  I can fight for autism coverage.  I can walk in the Autism Walk for research and I can try to do my very best in therapy, but all while being at peace with the way that God has created Jacob. 

This whole thing reminded me of the woman's retreat my church had a while back.  Let me tell you that I was not too excited to go to the retreat because we were moving out of our house THAT weekend.  I was stressed to leave my family and go and in fact I think that made me a little unattentive at the retreat.  But one thing we did there was that we had all picked up some stones.  These stones represented things in our life that we were hanging on to that we weren't giving to God.  At the end of the retreat we were to lay them down as if giving them to God.  I did lay all of my stones down, not as a lie, but I just really wasn't into the whole thing.  I remember my Mom asking me if I really had laid it down and given it to God.  I knew she meant Jacob.  I said yes and she cried a little, but it wasn't a happy cry.  She was sad.  She knew I hadn't laid my stone down, really.  Well to all the women that were there, I have picked up another stone as a symbol of Jacob.  I don't think I am quite ready to lay it down completely.  I want to say that I am and I want to lay the stone down, but this time I am taking this very seriously and I am not going to lie for the sake of sounding good.  I am going to deeply pray and ask God to release me from this and I am going to try my hardest to let go and be thankful for the Jacob that I have, even if it means that this Jacob will always be autistic or even non-verbal.  I will rejoice when he makes steps forward, but I will not be dissappointed or compare him to other children who have overcome autism. 

And as for this lady, she has 2 sons.  One is autistic and one is "typical".  She doesn't want or pray for her normal son to be autistic anymore than praying or desiring her autistic son to be normal.  What a great place to be happy, content, and thankful for the perfect children God blessed her with.  Thats what I desire.  She knows that the close bond that she has with her special needs son wouldn't be there if he weren't special needs.  She is thankful for the children God gave her.  This idea sounds so simple, but let me tell you there is nothing like having a child with special needs.  The unique thing about autism is that some kids totally reverse back to normal and some don't.  Without that true faith in Gods sovereignty it can be harder to handle than I can even describe.  I have been living with constant fear or worry that I am not doing enough for Jacob to pull him out of his autism.  That fear and worry has become my chains around my wrists.  I want so deeply to lose these chains and let trust God with Jacob and just do the best I can for today without worry of the future.  I am so thankful for this new perspective and for God sending me this lovely woman to share her journey with me. 

Monday, June 25, 2012

Fighting for him

Today I was babysitting a few kids and while they napped for a couple hours I read a book, yes an entire book.  It's called "Louder than Words" by Jenny McCarthy.  I am not a big fan of Jenny, we differ in more ways than one.  For instance....our lifestyles, religion, basically everything except that we both have children with autism, but for some reason I couldn't put the book down.  I guess I just needed to read about another mom's journey of confusion, frustration, anger, fighting so desperately for answers and to "fix" her child's autism.  Its crazy, but its so interesting to read about the different stages people go through.  One line that really hit me was "When your child is diagnosed with cancer, neighbors stop by your home bringing precooked meals, hugs, and support.  When your child is diagnosed with autism, families who see you in the supermarket will slip away down another aisle."  Its so true.  Obviously, I understand why you would comfort and aid a family with someone diagnosed with cancer, but often I wonder why some people avoid talking to me about Jacob like he has the plague.  That's how I have been feeling lately.  Its hard.  I want to be able to talk about it and cry sometimes, but I am supposed to just be okay with it by now.  Am I questioning why this is happening to me or angry at the world? NO.  But I still hurt for him.  I want him to be healthy and "typical".   I feel like I am in limbo right now, not that I don't want to do more for Jacob, but I am limited to what I can do because of insurance and money.  If anything this book is just what I needed to kick my butt back into FIGHT mode.  I just can't accept that there are no answers for him.  I know part of me must accept that he is different, but on the other hand I have to fight for him and keep seeking answers.  Jenny mentions a lot in her book about DAN! (defeat autism now) doctors.  Some of the techniques that they use are widely regarded as quack medicine by pediatricians so I have been reluctant to go to one, plus they cost a fortune.  I think I will look into it, though,  and just take Jacob to get some basic testing.  I have read a lot of research regarding yeast and heavy metal toxins and autism so it wouldn't hurt to have him tested. 

Today was especially hard for me and I think this book came just at the right time.  Instead of feeling sorry for him, I need to be his advocate and be strong for him.  For nearly 45 minutes today he frantically threw himself all over the floor, stretching out his arms and legs like he was so uncomfortable and just screaming and crying.  We tried snuggling, burping, changing, feeding, tv, everything, yet nothing would console him.  In that moment I just wished for a word.  I wished he could tell me what was hurting or what he wanted.  It was a cry as if in pain and not his temper cries and that was the hard thing for me.  "I don't know what you want, baby" I kept saying. "I'm sorry, buddy. I'm so sorry."  I would give anything to just know how to help him. 

Jacob turned 2 last week.  We had a super fun party and he did excellent.  No tears when we sang, and he played and splashed around in the water.  It was perfect.  His 2 year checkup wasn't as bad as expected.  Yes I had to fill out the crazy survey which showed that Jacob was obviously so far behind on every single question, but I was ready for it and I just breezed through.  One strange thing I wanted to document in case I want to remember in the future was that the doctor mentioned Jacob had dropped to the 1% for height and had just gotten in his 1 year molars.  I asked if his size and teeth issues were typical for autism and she said no.  He may just be a little guy.  He's my sweet little guy. 

He made a huge breakthrough in his picture exchange communication system.  We finally found a few games (putting bears in a tub and then spilling them out and straws in a bottle and spilling them out) that he loved enough to start pushing the "go" PEC for me to spill the items back out on the floor for him.  It literally makes me want to cry every time he pushes it.  HE IS COMMUNICATING!! Its only a matter of time before he can tell me more with his pictures and I can't wait.  He also has become fixated on the cabinet door hinges.  He opens the doors and just stares at them as if he is trying to figure out what makes the door work.  Its pretty cute, but I have to limit it or he would stare at the door all day. 

We tried Jacob in the 2 year old class in Sunday school this past weekend and of course he is not ready for it without a coach.  My husband thought maybe he would be okay, but I knew he wasn't ready.  When the teachers call the kids to line up or come listen to the lesson Jacob just has a blank look on his face as if they are speaking a foreign language.  He also had a huge rock from the playground in his mouth that luckily I saw and ripped out of his mouth before he tried to swallow it.  He just has no idea yet, but I have faith that he will.  My plan for this summer is to try and stay really concentrated on Jacob's therapy and get him into a DAN! doctor when we can.  Please pray that we find a good doctor who won't try to sell us on lots of pills and junk we don't really need.  I just need an honest doctor to run tests and help us with some answers.  I am so thankful to be recharged and ready to keep fighting for my little guy.  He is so precious. 

Friday, June 15, 2012

Thankful for a new sound

 Jacob occasionally babbles a variety of sounds, but for the last few months he would only say about 4 sounds when we ask him to...."dada (with no meaning behind it), u, a, and mumble the tune to uh oh.  Today its official!! We have another sound. He is saying "y"! Yippie for Jacob and progress.  I am so thankful for another sound.  I can't wait until he can say a word or two!

Recently, Jakey has discovered how to take off his pj pants and diaper, so every 20 minutes I find him running around naked.... Not thrilled.  He seems to be gaining weight finally.  He eats a lot and loves pizza, yogurt, and chicken.  He is becoming more and more irritable if you try to make him do things he doesn't want to do, such as therapy.  This seems to be appropriate for his age.  Can't wait for his birthday on the 22nd!

We have his 2 year check up on his birthday and will have a super fun party on the 23rd!! Thinking we may skip the singing this year, though, since last year he cried and cried when everyone sang for him.  Maybe we will all say happy birthday really quietly.  Its his special day, so we can do something especially for him.  Love my sweet boy.

Monday, June 11, 2012

Tongue Tied

A few months ago we went to the pediatrician and she told us that it was time to have Jacob's tongue clipped.  He was born with a birth defect that people refer to as being tongue tied.  It looks like a snake or heart shaped tongue.  He has very limited range of motion with his tongue.  When he was a baby I went to 2 different ENT doctors to inquire about getting it clipped and both said unless he was losing weight that they wouldn't consider clipping it until he was 2.  Well, a friend referred me to this awesome ENT that I took Jacob to last week and he told me that Jacob has the classic "tongue tied" birth defect.  He said that his tongue was the primary reason Jacob wouldn't nurse as a baby.  With a tongue like his there was no way he could latch.  Ugh...Very frustrating.  My breast milk would have been such awesome nutrition for him.  Anyways, we are having Jacob's surgery to get his tongue clipped on August 1st.  It is a minor surgery, but they will have to fully sedate him, so please be in prayer for this.  The pediatrician told me that this surgery is considered controversial because many doctors were clipping kids who didn't need it.  Therapists can help a child to work around the defect to learn to speak and eat with it, but both the pediatrician and ENT said that with Jacob's developmental delays they don't want any extra obstacles to interfere with his speech.  The ENT also said the surgery is only controversial if the child doesn't need it and Jacob does.  I also read a few blogs of people who had their tongues clipped and many said they wished they'd had it done very early on because it hurt their speech and it looked like a deformity and they couldn't french kiss their spouse with it.  HAHA hopefully I don't have to worry about Jakey french kissing any time soon, but I sure want to give him any advantage I can with his speech and eating.  Jacob currently doesn't eat anything that crumbles in his mouth, like cheese its and crackers.  I think it may be because he can't maneuver his tongue around to feel like he has control of the food in his mouth.  The doctor said that he didn't feel that the tongue was the reason Jacob isn't speaking, but that getting it clipped may help.  I don't love surgery, but I am excited to finally be getting his sweet lil tongue fixed. 

Therapy has been going well.  I am still using all the ABA techniques I have been trained in, but instead of doing all of it in a controlled setting we use it during floor or play time.  Jacob surprised me the other day because the therapist said it was time to move on to a more difficult puzzle than the 3 piece Melissa and Doug puzzles we'd been working on and so I purchased him a 9 piece puzzle (the pieces don't fit all together, they each have their own spot) but he mastered the new puzzle in 1 day!!! Amazing!! I introduced him to a 12 piece that does fit together, but he just threw all the pieces and ran off, so I guess we will keep working on it.  He has started to imitate me a little bit.  When I stomp my feet and ask him to stomp, he does it.  Two days ago, I got on all fours and asked him to crawl with me and he did, but hasn't done it again.  It was so sweet to see him playing with me that way, though.  I love that we are making connections finally. 

On a more personal note, I went and saw the movie What to expect when you're expecting and it was so so cute.  I watched as the women had their babies at the end and were holding them gazing at them and I just cried and cried.  It made me so sad for some reason.  I guess I remember when I had Jacob and those connections just weren't there.  I connected immediately with Jordan and Tyler, but I question myself and if I tried as hard as I could to make those connections with Jacob.  I don't know if I did.  It kills me to think about it. Was I the best mom I could possibly be to Jacob in the beginning?   Luckily, I spoke to my sister about it and she reassured me that Jacob was different from the beginning and everyone could see it.  She said that I am trying my best now and that's what matters.  I felt the need to share this because I know every mom out there can relate.  Are there things you regret or wish you'd done in the past for your kids?  Surely there are, but it doesn't help them or yourself to focus on what should have been done.  Focus on being the parent that God wants you to be NOW.  Its never too late to start being the parent that you need to be.  The thing is I can't change all that I did or didn't do and worrying won't help, actually it can only hurt me.  I have to pray for God to give me the strength to be the mom He wants me to be now.  With God's guidance, through the Bible and prayer, I will teach and discipline my children in love and truth.  I have to stop those thoughts of things of the past right when they start coming up.  Sure its hard, but parenting isn't easy.  If I want to give my children all I can, I can't do that being sad, depressed, or anxious about what I didn't do.  That's my current goal.  I am praying for peace about the past, and trying to focus on things of God and how to teach my children all about Him.  I love my family so much and I don't want to take even one second for granted.  I don't want to waste one more minute on my past.

Tuesday, June 5, 2012

Fragile X Results

We finally received the results for the fragile x testing, which came back.....NEGATIVE!! Praise the Lord for the good news and answered prayers!!

We are very excited to know that its not fragile x and while this is good news for our family, I pray for the families that do not receive such news and for their journey through fragile x.

So where does that leave us now?  Well, still just AUTISM.... In case you haven't heard me say it lately (yeah right LOL).... there is still no one cause for autism and there is no cure.  We are still searching for answers and giving Jacob different therapies through ECI and I am giving ABA therapy with help from a great therapist training me. 

Jacob turns 2 this month on June 22.  We are preparing for Jacob's 2 year evaluation at the pediatrician.  Let me rephrase that....I am preparing for Jacob's evaluation....emotionally.  He still doesn't speak and I know he will not meet any milestones for his age, except motor.  So I have to keep reminding myself that he is special needs and his milestones are just different. I can't help but to hope and pray one day he will be on target.  That's the hardest thing about an autism diagnosis.  A lot of children overcome the symptoms, so you always hope your child does.  The truth is that some do and some do not.  Its hard to balance that truth with the hope for your child.  Hope that makes sense....

However, I am very very very thankful and happy for so many things.  Jacob is so happy and so loving.  I am so fortunate that he loves his snuggle time and he loves kisses from mommy.  I am so thankful that he sleeps from 8pm to 7 am.  I am so very thankful that he loves me.  Also, I am so thankful to my husband's work...New Tech Global for their willingness to match dollar for dollar any donations that the employees donate to autism speaks.  I hope more people will join us for the walk this year on October 13.  Its only about an hour and a slow paced walk, because kids are with us, and it just helps so much with getting the word out and research.  I am excited to see what happens this year.  God is so good.  I also ask that if anyone has any ideas regarding how I can raise money for the walk this year please email me.  Our team site is if you want to join the walk or donate a little. 

I also have a prayer request for Jacob.  His therapist has told me that keeping him behind in the 1 year old class in the church nursery is a very bad idea.  The hours that he is in class with other children are so vitally important for his learning and development and being with children so much younger than him will not teach him to behave appropriately.  He gets along fine with the 9 months-1 year olds, but really needs to experience a class setting with children his age.  He needs to be coached on how to sit at a table and color or listen to story time.  However, if I were to put him in with the 2 year olds he would really distract the class.  I don't want Jacob to be a distraction to other children and I don't want him just running to the corner and hiding.  Our church has begun a coaching program where special needs children can have a coach with them in their own age-appropriate class.  I think this is a brilliant idea and I am so thankful to our church for trying to meet the needs of all the children in the area.  So my prayer request is for people to pray that we can find a coach for Jacob.  I can't wait to see what he can learn and do with some help. 

In therapy, he is doing well using his PECS (picture exchange communication system) to request certain toys and his milk.  He is doing 3 piece puzzles with ease and has mastered the idea of matching 2 identical objects.  Moving right along!!! Thank you for your continued prayers and support.