Jacobs new school and new changes

Jacob has been attending his new clinic for a while now.  We have seen some incredible changes and some not so incredible changes.  For the last few months, they have been encouraging Jacob’s speech by giving him access to almost anything he wants if he uses full sentences…within reason of course.  So, if he picks up his books and asks to go do his work in a quieter room then they allow him to do so or if he asks to go see a specific teacher, they let him.  Because of this we have seen a dramatic increase in speech at home.  He still isn’t having conversational speech, but he is requesting things all the time with full sentences. 

There are still times when I ask about his day or how he feels and he looks at me and starts humming a song or he gives his usual answer and I wonder if he knows what I am asking or how to reply without the robotic “I am good, how are you” response.  We still aren’t sure how much he understands when it comes to things that aren’t concrete.  However, he does understand things like “go brush your teeth, hand me the soap, make your bed” and he listens to instructions very well.  He has even discovered his deepest love for the word NO. 

We are thrilled that he can tell people no and that he can tell us specific things about his day like when I asked him who bit him at school.  He couldn’t tell me that it hurt or made him sad, but he did tell me exactly who did it, and that was a huge win!  However, we have seen some unexpected behavior. Lately, he has been engaging in lots of stereotopy and hand flapping and imitating negative peer behavior since starting at the new school, including loud screaming fits.  He is typically a pretty chill kid, so this has been quite a difference.  He runs into the living room and jumps on my lap and yells silly made up words in my face over and over, which at first is very funny, but quickly becomes less than funny by the 100th time.  He screams when he goes into the bathroom for no reason and he uses his loudest voice to scream for things in the grocery store wondering why I am not caving to his every wish like the school is.  Sometimes it feels overwhelming.

It’s hard to remember to be thankful for the growth when the negative is so obtrusive.  While on vacation I finished a book called The Hiding Place and I was reminded of God’s call to be thankful in all circumstances, not just the good ones. 

"Rejoice always, pray without ceasing, give thanks in all circumstances; for this is the will of God in Christ Jesus for you." 1 Thessalonians 5:16-18

These women in a concentration camp trusted God so much that they gave thanks for fleas in their room before even knowing that those fleas would be what God used to keep the guards away.  It was so convicting to me.  Obviously, my situation pales in comparison to even a fraction of what these women went through, yet I struggle sometimes to see how much I have to be thankful for…especially when the roller coaster of autism is at a low point. 

In the book, when Corrie was unable to see how she could be thankful for fleas, her sister encouraged her.  When she was unable to see how she could forgive, her sister encouraged her.  Once again, I was reminded of how important Godly community is in my life.  Reading books like this, talking to my friends that pray for me and encourage me in Christ and leaning on friends from church means so much when I am struggling.  Pointing me back to the Lord and realizing that I am incapable of getting through this without Him is what I desperately need in my life.  One of my favorite quotes from Corrie Ten Boom was, “It is not my ability, but my response to God’s ability, that counts.”  In so many areas of my life, I feel I am not qualified, but God is.  If I am in His will, He will help me. 
I am so thankful for  my family, for Jacob, and for his autism.  I am thankful for my church and my friends.  I am thankful for this new clinic and Jacob talking so much more at home and becoming more expressive.  I am thankful he is saying NO more because that means he is expressing HIS feelings and not just what people tell him to think and do.  God is so good!

My prayer for you is that you find a community of believers to help you through life and to guide you back to Christ when times seem the most tough.  Even when you feel you can’t, try to give thanks.  There are ALWAYS things to be thankful for.  Allow God to give you a heart that genuinely beams with appreciation for all He has done.  

Numbered Pancakes

I decided to stop making numbered pancakes for Jacob this year.  I’ve made pancakes in the shape of the grade each of my kids are in for their first day of school for years.  It’s become such a tradition for my older son and daughter that they march right into the kitchen on their first day with huge expectant grins on their faces waiting to see their custom breakfast. 

  But for Jacob, I always just make his number and take a pic…knowing that he isn’t in that grade.  This year he would technically be classified in the 3rd grade (he's a summer baby). The closest thing we have to a “grade level” is at church where he just graduated the kindergarten class. We are hopeful that he will be able to remain in the 1st grade class.  It doesn’t have free time and the kind of structure that kinder did, so we still aren’t sure.  Jacob is super smart, but the idea of him growing up seeing these numbers that don’t apply to him made me sad.  Why have I continued to do that?  In my mind I have these silly expectations that really only bring heartache, all while I could be celebrating his unique talents.  

So, I made Jacob a big ole fat chocolate heart pancake this year.  A heart to represent how much we love Jacob just as he is.  A heart to represent how much we love his hard work and his silly personality.  A heart to represent that we will always accept him no matter where he stands educationally or how many milestones he’s met.  A heart to represent how much we love when he talks, sings, stems, and every other little thing about him.  A heart to show him that we can celebrate him just as he is. As he grows up and becomes more like the boy God created him to be and less like the boy I have envisioned or made up in my mind, I hope that I can continue to grow in my acceptance and understanding of him.  It’s not only ok that he doesn’t have a “grade” to fry up on the stovetop, it’s extraordinary.  He is unique and that’s something to celebrate!

Nowhere To Go

“The Lord is my shepherd. I shall not want. He makes me lie down in green pastures. He leads me besides still waters. He restores my soul. He leads me in paths of righteousness for his name’s sake.”(Psalm 23:1–3)

Every now and then people tell me that I am a really strong mom.  I laugh and shrug and say thank you or try to explain that I'm really not.  But in all seriousness, I AM NOT STRONG!  Weeks like this past one literally bring me to knees.  I have crying fits or little freak outs every single time I am blind-sided by new challenges with autism.

Then I find myself faced with a decision.  The decision to linger there or the decision to turn to Christ.  Every single time something comes up I go through this. Every. Single. Time.

So, I have to pick myself up and beg for God to give me peace and wisdom.  I have to remind myself…scream to myself that God is good.  Then I have to put my money where my mouth is.  Will I trust that what God has planned for us is ultimately for our good and His glory, or will I not?  When there is literally nowhere to go, will I wait on the Lord and trust? There’s only one way that I know to fight my freak out thoughts and that’s with truth.

Yesterday I finally got to bring Jacob to a local ABA clinic to let him try out a social skills class.  Upon arriving I immediately knew that the class wasn’t right for him.  It was kids ages 6-12 that were all verbal and walking on their own and making decisions.  I told them they may need to drop him down to the lower class, but they insisted on taking him in to try.  Not long after, they let me know that the director had brought him to the 4-6-year-old class.  After attempting to participate, they let me know that he needed 1 to 1 and couldn’t be alone in a class like that.  These were not classes with typical peers, but classes for kids on the spectrum. My heart sank.

It’s not a huge surprise, although it was gut wrenching.  These classes are for kids on the spectrum, but he isn’t able to participate.  He still needs 1 to 1 ABA therapy to learn how to attend to a lesson, how to follow through with commands, how to be social, and especially language skills.

However, the clinic that Jacob attends (that is 1 on 1 ABA therapy) is drastically cutting his hours.  He is in a clinic that goes up to age 10. His therapist told me that because he is so old, there aren’t opportunities for him to learn from kids that are higher functioning there, so they feel that he needs more. The problem is that there isn’t a place for Jacob.

A public-school class is too language driven for him to understand it and a special education class wouldn’t move as fast academically as he needs.  Jacob learns skills very fast when he is shown the skill, but his language is severely lacking. It’s a very difficult thing to explain.  The clinic that he needs to be at still has a 18-24 month waiting period.  So here we are stuck in this weird place with nowhere to go, no classes that fit his need, and a huge reduction in ABA hours that 3 different clinics say he needs. It may not seem like a huge deal to others, but for me, realizing that we haven't come as far as I assumed we were and realizing we probably are not at the school where we need to be, is a really hard pill to swallow.

Last week we dealt with severe panic attacks at the clinic from rain, Jacob trying to rip a lightbulb out of a fixture and cutting himself, then finding Jacob in his bedroom with a huge bloody face with no known reason and he can’t verbalize what happened and now this huge cut in hours at the clinic. To top that off, he can’t participate in the social skills classes I have been waiting and hoping were right for him.

We are at a point where there is nowhere to go. At least, I have no idea what to do for him right now.  So today, I am praying this to myself. 

“The Lord is my shepherd. I shall not want. He makes me lie down in green pastures. He leads me besides still waters. He restores my soul. He leads me in paths of righteousness for his name’s sake.”

(Psalm 23:1–3)

In the past, I’ve only ever read that as a sunshine and roses verse.  God does great things in our lives and our lives will be so happy and pretty and perfect.  But, that isn’t the promise from God.  In troubled times, God is my shepherd.  What more could I want than for God to lead me, to still me, to calm me, and to guide me into His will and for His purposes, even if I am in troubled times? 

Ultimately, Jacob’s treatment is not what I need most or even what Jacob needs most. We need Jesus most and we need to glorify God most.  So, I pray today that God gives me wisdom to know how to use this time of stand still to honor Him, reflect on Him, to love him deeper, and to trust in Him more.  I am thankful that God gives me so many hard and challenging opportunities to realize and feel my great need for Him.  I shall not want, because the Lord gives me everything I need for my good and for His glory, not everything in this moment to make me or Jacob comfortable and happy.

If you are struggling with current circumstances, I encourage you take this time to grow closer to God. If you do not know God and want to have a relationship with the Lord please know that you can.

The Bible says that God is the creator of all things.  He is holy, that means he is perfect. He has never sinned and will never sin.

Romans 1:20 For his invisible attributes, namely, his eternal power and divine nature, have been clearly perceived, ever since the creation of the world, in the things that have been made. So they are without excuse.

However, the Bible says that man is sinful and in need of forgiveness from our rebellion against God.

Romans 3:23 for all have sinned and fall short of the glory of God,

The Bible says that the punishment for our sin is death; separation from God here on earth and for all eternity.  Because God is holy and just, our sin literally cuts us off from Him.

Romans 6:23 For the wages of sin is death

But God loves us so much that he didn’t leave us here in our depravity.  He gave us a way to reconcile our relationship with Him.  He gave us a way to be made holy in His eyes.  He sent His only son, Jesus, to come and live a perfect life, die on the cross to pay the punishment for our sin (past, present, and future) and conquer death by rising from the dead on the third day.

Romans 5:8  but God shows his love for us in that while we were still sinners, Christ died for us.

If you believe this and confess Jesus is Lord of your life, you will have salvation.  You can be made right with God and have a personal relationship with God.  Confess your sin, repent and make Jesus the boss of your life and you can have salvation!

Romans 10:9-10 because, if you confess with your mouth that Jesus is Lord and believe in your heart that God raised him from the dead, you will be saved.10 For with the heart one believes and is justified, and with the mouth one confesses and is saved.

Why is Easter Important?

Do you ever wonder why  Easter is so important? What does it say about God?  How does it affect us?  How should it change us?

A lot of people know it is the observation of Jesus’ death on the cross, but don’t really know why that’s so important.

I blog about Jesus and His salvation, how HE alone gets me through this life with hope and joy, so I wanted to share with you about how you can have that same hope and joy and salvation.

The Bible says that God is the creator of all things.  He is holy, that means he is perfect. He has never sinned and will never sin. 

Romans 1:20

20 For his invisible attributes, namely, his eternal power and divine nature, have been clearly perceived, ever since the creation of the world, in the things that have been made. So they are without excuse.

However, the Bible says that man is sinful and in need of forgiveness from our rebellion against God.

Romans 3:23 

²³ for all have sinned and fall short of the glory of God,

The Bible says that the punishment for our sin is death; separation from God here on earth and for all eternity.  Because God is holy and just, our sin literally cuts us off from Him.

Romans 6:23

²³ For the wages of sin is death

But God loves us so much that he didn’t leave us here in our depravity.  He gave us a way to reconcile our relationship with Him.  He gave us a way to be made holy in His eyes.  He sent His only son, Jesus, to come and live a perfect life, die on the cross to pay the punishment for our sin (past, present, and future) and conquer death by rising from the dead on the third day.

Romans 5:8 

⁸ but God shows his love for us in that while we were still sinners, Christ died for us.

If you believe this and confess Jesus is Lord of your life, you will have salvation.  You can be made right with God and have a personal relationship with God.  Confess your sin, repent and make Jesus the boss of your life and you can have salvation!

Romans 10:9-10

⁹ because, if you confess with your mouth that Jesus is Lord and believe in your heart that God raised him from the dead, you will be saved.¹⁰ For with the heart one believes and is justified, and with the mouth one confesses and is saved.

For me, the severity of my sin was enormous. The depths of hurt and pain from sin was so profound and my rebellion from the Lord seemed too far for forgiveness.  However, Jesus’ sacrifice on the cross was so much bigger.  God, in His perfection, created a way for our forgiveness and reconciliation to Him.  Because He is perfect, I trust His perfect plan for my life, no matter what that means.  Because of His sovereignty over all things, I have hope that life is bigger than me and that the future is filled with HIS magnificent glory. That joy supersedes circumstances. In fact, the forgiveness that I have received, though I never deserved, is so sweet and so wonderful it changed my heart.  The Lord literally gave me a new heart.

I urge you to seek the Lord.  Cry out to God and ask for forgiveness.  Confess and turn from your sin and ask for Jesus to be your Lord.

I pray for your salvation. I know many of you are hurting.  Struggling through constant trials, seeing your children suffering, and being a full-time caretaker is hard.  Life can be incredibly hard.  While becoming a Christian doesn’t promise you a life of ease, it does promise you a life of purpose, hope, and joy despite those burdens.  I know personally that in my sin, I was completely desperate and lost.  I was searching for joy, but everything fell short.  Surrendering my life to the Lord and serving the Lord brought me peace and more joy than I could’ve imagined.  My struggles and fears pale in comparison to God’s power and peace.

Romans 15:13 

¹³ May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.

When you feel like you can’t ask for prayer anymore, ask anyways

I sat there in my bible study group a few weeks ago wondering if I should ask for prayer again..for the same old prayer request I've had for 7 years now.  I wondered if I needed to bring up one of the many current dilemmas we are experiencing from autism to feel like I had a valid reason for asking for that same prayer again and again.  I wondered if I should even ask for prayer again at all.  And then at another meeting the thought crossed my mind, "Should I bring this up again?" But there I was with everyone looking at me waiting to hear my prayer request and I couldn't help but to burst out in tears.  It's tiring to be a full time caretaker.  Its tiring to worry about safety all the time.  It's tiring to worry about education and speech and doctors appointments and anxiety all the time.  And it's tiring to feel like I shouldn't ask for that same prayer again and again. 

BUT I need prayer.  I need the same prayer over and over.  Prayer to remain faithful in the hard times, to continue leaning on God and focusing on God, prayer for endurance and long-suffering, prayer for Jacob to continue growing and learning, prayer for my marriage and my kids, and prayer through the really challenging times. 

In past studies, I have learned that the purpose of prayer is primarily to learn more about God.  It's also our way to honor and praise Him, to make requests or supplications, our way to hear from Him and so much more.  So I wonder why I keep feeling like I'm such a burden or nag to keep asking.

It made me wonder if other people feel the same. Do you struggle with asking for the same prayer request again and again?  Do you also feel awkward when people ask how the situation is going, knowing that it hasn't gotten better and sometimes its worse?  I know for me its hard to be real and say that things are still a struggle at times.  I think people find it uncomfortable to know that things aren't getting any better.  They want a response that things are improving when, at best, things are the same.

But the truth is, while my situation isn't getting any easier, my walk with the Lord absolutely can become more intimate, my joy in the Lord can become stronger, and I NEED to know more about God. I need to know more about His sovereignty, especially when going through life long challenges.  To give God glory throughout the trials in a genuine way, I have to know and trust who God is.  That only comes through prayer and study. 

We need to seek his face and ask others to help us seek Him and know Him more.

So I want to encourage you, when you feel like you can't possibly ask for the same prayer again, to ask anyways.  People that love us will want to know that our situation is still demanding, tiring, and difficult. People that love us and love God know that we need Him more than anything else...more than health, comfort, etc.  

So I did it. At the meeting, I asked again for that same prayer and I cried (too much).  As they prayed over me, I thanked the Lord for the encouragement.  I pray for encouragement for moms feeling this same way.  I pray you find the courage to ask for "that" prayer request again and again, knowing that you NEED to know God more.

We Got to Thank Taylor Swift in Person!

This past weekend was pretty epic! Taylor Swift invited us to her concert and backstage to meet her.  We were so excited to get to thank her for Reid in person.  Reid has changed Jacob's life and our family life so so much.  I don't think that she will ever truly know how much Reid has impacted Jacob.

All week long at the clinic the therapists worked on showing Jacob pictures of Taylor and teaching him to say "Hi Taylor" as well as showing him videos and making social stories of what it would be like at her concert with the flashing lights and sounds. I was more than concerned about how he would handle the concert and waiting in lines, etc.  I went to Party City and bought a bazillion little toys, the clinic printed out pictures of Randall's (the grocery store that he is currently obsessed with) and I had tons of candy all in my purse to use in case of meltdowns.  We ended up needing every single last thing I brought, but it worked!

We got to go backstage before the concert.  When we walked in, Taylor made a sweet comment about Reid being a fluffball and actually didn't try to pet him to my surprise.  His vest has a Do Not Pet sign on it (which I wish I would have removed for her), but I found it so refreshing that she didn't assume she should be allowed to pet him. I TOTALLY would have made an exception for her, but loved that she was so respectful of that. Talk about a celebrity that gets it!

Next, she got on her knees and looked Jacob right in the eyes and thanked HIM for coming to her concert even though she knew it was loud and there was so much going on.  I was so thankful she tried to connect with him instead of talking over him to me.  She saw the boy, not the disability.  Nothing makes me happier than when people chat directly to Jacob.  

After that, Jacob grabbed her face and pushed her hair back and said loud and clear "Hi Taylor!" and without batting an eyelash she said "Hi".  She didn't act upset about his extreme lack of personal space. Her sweet smile just says it all. After their picture, the flash scared him really badly so he snuggled up with her for our group picture. 

Taylor hugged Jordan and I and then even offered for people to take a picture with their cell phones so there wouldn't be another flash.  We were given strict instructions to move quickly and only take one picture, but once she saw that he was having difficulties she told her bodyguards that it was ok and to take more pics.  These are the two they downloaded for me.  Cell phones weren't allowed, probably because people would go nuts in there. She was just kind and understanding.  It was very cool.

The tickets they gave us for the concert were right up front.  Jacob made it through most of the concert and loved it.  He danced to "Shake It Off" and enjoyed the giant drums on stage.  Jordan missed her Homecoming to go, so she wore the dress we bought her with a jacket and had the time of her life.  She was so happy to thank Taylor and meet her and get to experience such a cool night.

It was awesome to be able to thank Taylor in person and tell her how much her gift/Reid means to us.  She is such a super autism advocate. I thank God for these blessings and experiences and cannot wait to see how the Lord uses Reid to help Jacob even more. 

Fear God, wait for the Lord

We are a few weeks in now and I must say that life with Reid has gotten A LOT easier.  Walking with Reid has become pretty normal.  Its much simpler than wrestling with Jacob.  We have seen Reid protect Jacob while crossing streets and he even saved Jacob from a car the other day.  We were headed out of Costco and the wind started blowing.  Anyone that knows Jacob, knows that the wind is his mortal enemy.  He flung his arms all around and took off running behind us towards moving cars.  I made Reid stop, which stopped Jacob in his tracks before getting in front of the car.  It was a pretty cool moment. 

 

Actually, every moment with Reid has been pretty cool. The biggest thing is that Jacob is walking by himself! He has independence and he is so proud.  Jacob’s therapists say that they have never seen Jacob happy like he is now.  I am so grateful.  I had to remind myself to just breath and take it all in and relax.  The crisis of a new dog and new rules and new schedule was over. 

Funny how right when one thing ends another begins, right?  I’m sure you ASD moms get it.  Last week we took Jacob to another BCBA to get an evaluation for an academic program (because he is really behind) only to hear that he isn’t ready for all the academics because his language comprehension isn’t age appropriate.  Unfortunately, the clinic he attends only goes up so far and doesn’t work on the high functioning language and reading comprehension issues due to insurance.  That leaves us paying out of pocket for a really incredible, but really expensive BCBA.  Sometimes I wish for things to just be easy for a bit…for there to be a time without crisis or struggle…  But right when I needed it, I heard from God.

‘Fear God, wait for the Lord’

This past Sundays sermon really hit home for me as a special need momma.  The sermon wasn’t geared particularly at this, but if you, like me, live in either a constant state of crisis or the next crisis is just waiting to happen I urge you to listen to the sermon here: https://www.ebcnorthhouston.com/isaiah-812

Isaiah 8:11-15

¹¹ For the Lord spoke thus to me with his strong hand upon me, and warned me not to walk in the way of this people, saying: ¹² “Do not call conspiracy all that this people calls conspiracy, and do not fear what they fear, nor be in dread. ¹³ But the Lord of hosts, him you shall honor as holy. Let him be your fear, and let him be your dread. ¹⁴ And he will become a sanctuary and a stone of offense and a rock of stumbling to both houses of Israel, a trap and a snare to the inhabitants of Jerusalem. ¹⁵ And many shall stumble on it. They shall fall and be broken; they shall be snared and taken.”

In a time of crisis God reminds us to honor him as holy and to fear and dread him.  What an interesting thing to do in a time of crisis. 

“Do not call conspiracy all that this people calls conspiracy” instead “him you shall honor as holy” 

I can’t count the times that I have tried to blame someone or something or mostly myself or my past sin for Jacob’s autism.  Guilt and anger can creep up in my heart and steal my joy and test my faith.  As my pastor suggested, it is usually because I get scared and I want to find some order in the chaos of it all.  But God is sovereign over all things.  I recognized that every time I start to question ‘why’ or those thoughts of blame and conspiracy creep in, I need to study God’s word and to be reminded who he is and that he is in control of everything that happens.  Jacob’s autism was not a surprise to God.  The struggles our family faces are not a surprise to God.  The opposite is true, nothing happens without God’s consent.  That truth alone gives me comfort.  As a believer, I know that God wants good for me.  His good may not look like my good, but I am so thankful for even that.  His plan and purpose aren’t limited to my understanding or desires or definition of good and that gives me hope.  God, in his infinite sovereignty and goodness and justice and love, allowed Jacob to have autism. He has a plan for our lives and that plan is obviously bigger than mine.  His authority can be trusted. Because of that truth I have joy despite the times of real struggle in our lives.  God is holy.

“…do not fear what they fear, nor be in dread” instead “Let him be your fear, and let him be your dread”

If I’m being honest, what haven’t I feared when it comes to Jacob?  I have feared for his safety, his health, his happiness, his learning, what people think of him, what people think of me, am I sharing too much, is the sharing helping, do people think I am an idiot (probably)…I have dreaded the future for him, I dreaded the future for my marriage (will we always be caregivers, will we get vacations alone, etc.)…the list goes on and on.  Usually I try to nip that fear and dread right away.  Although those fears are usually fleeting and I try not to let the fear influence my behavior, I am certainly not perfect.  It is hard not to fear men.  Its hard not to fear a lot of things and its hard not to dread the future sometimes.  But, God says we should only fear and dread him.  I loved that my pastor explained the freedom and confidence you can have when you no longer fear the world, but only fear God.  He said that God will replace fear and dread with hope and peace.  We fear God because he is holy and perfect and just and we want to be holy imitators of him, not slaves to the world.  When we fear the things of God, all the things of the world are put in to perspective.  We dread the future without a saving faith in Jesus because we are separated from God in this life and the afterlife because of our sin.  God is so holy and sin cannot be in his presence.  Therefore, we cannot be in his presence because we are sinners.  But God sent his son Jesus to live a blameless life and die on the cross to pay our punishment for sin.  That price was paid in full on the cross and when Jesus died and rose from the grave he conquered sin and death once and for all.  If you believe this and surrender your life to Jesus, God forgives all your sin past present and future and you can be in right relationship with him.  We fear/ dread God because he is the creator of all the universe to which we owe all.  When you have Jesus as your foundation, nothing, no crisis, no diagnosis, nothing will shake you.  Your fear is replaced with true hope because God is bigger than your crisis.

God is big enough to get me through any crisis that comes up and he is big enough to do the same for you.  Trust in the Lord “ And he will become a sanctuary and a stone of offense” for you in your time of struggle.  God doesn’t promise that you will be crisis-free as a believer, but he walk with you through anything and he will give you comfort and true hope.

If you need prayer or if you want to know more about becoming a Christian please email me at allisonhill4jesus@yahoo.com and I would love to talk about it with you and pray for you.