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. 

Reid is here...and it's NOT what I expected.

What a whirlwind the last week has been! I traveled to Portland, Oregon to get Jacob’s service dog and in just one week all of my expectations and plans have shifted.  I can’t really explain what I expected from the dog…possibly that the dog would just magically change our lives and make everything ok…maybe just an added security…I don’t know.  I do know that by day 1 of training, I realized that having a service dog was not going to be what I expected. 

On day 1 of training I learned a lot.  I learned that our service dog is a third-party service dog.  This means that I am the main handler of the dog and the dog and I work as a team to assist Jacob.  There will never be a time that the dog is tethered to Jacob alone.  This is because Jacob does not have the ability to care for and command the dog on his own.  If he ever gets to be the dog’s handler, it won’t be for years and years.  So basically, I have a service dog.  I learned that I would be communicating with Reid through his leash and series of hand movements as well as verbal commands.  I also learned that Reid would bond with me even more than Jacob. 

Many people have emailed me asking things like ‘how will the dog know what to do?’ or ‘how will the dog know that Jacob is his boy’.  Well, in the beginning he won’t.  What he knows is to obey the person handling him and the commands given to him.  So, if Jacob tries to run I will command the dog to stop and then Jacob can’t run.  If Jacob has anxiety, the dog may sense it in me and come to me, but I will guide the dog over to Jacob.  Eventually, by being tethered to Jacob everyday he will learn a lot about Jacob. 

As we walk through stores or parks or anywhere, I have many many rules to follow. I have to pay constant attention to the dog so that I can redirect his attention to me.  I hold the leash in a particular way and move it in certain ways to direct him where to go and what to do.  I give him treats when he obeys, I don’t allow anyone to touch him or get his attention, I do training with him twice a week.  There were lots of details I had to learn and be critiqued on throughout the week during training.  The trainers said that as I get used to handling him it will become second nature.  I will feel the dog pull on the leash and gently command him back to heel.  I will notice other dogs in the area and know to get Reid’s attention and keep it on me to redirect him. 

Basically, on day one of training I realized that I knew nothing about service dogs and that I had no idea about all the work that would go into having this dog.  I’d be lying if I told you that I wasn’t feeling a bit panicked there.  I cried a lot.  I totally fell in love with Reid, but I already have a full plate…how was I going to add on to my responsibilities with a very high maintenance dog?  But by the final day of training, even though I was still processing this new job that I had, I realized that my plan was totally bogus compared to God’s plan for our family. 

Although Reid will be a lot of work for me, I learned so much about how he will help Jacob in ways I hadn’t thought of and didn’t realize we needed.  Although it won’t be easy, our lives and particularly Jacob’s life will be better, and he will have so much more freedom.  I wanted a dog simply to tether to Jacob and to anchor to the ground when he tries to run.  After all, that is the scariest thing that he does. 

That is not how this dog will help Jacob. 

They told me that for clarity and the public they say the dog is a physical anchor (and yes Jacob can’t run off tethered to the dog), but we will no longer refer to the dog in that way. There are autism anchor dogs, but ASDA doesn’t believe in having a service dog to only prevent Jacob’s maladaptive behavior.  The reasoning is genius.  Jacob is supposed to bond with Reid.  When Jacob runs and I command Reid to stop, I am also telling Jacob to stop and that he cannot run off.  Jacob associates me with the no.  I then tell Jacob to slow down and grab Reid’s handle and then allow him to gain access to what he wants if it is appropriate.  That is teaching him self-control, impulse control, and to calm down, rather than teaching him that he has a big dog that is preventing him from getting what he wants.  That would possibly make the dog a negative thing for him and we want Jacob to love and be loved by Reid.  The dog also provides emotional comfort and support.  In just one day I have seen the dog curl up with Jacob in his bed and Jacob fell asleep in 10 minutes rather than his hour long of chanting before sleep.  I don’t know if that will be the norm, but I can see that Reid has a calming effect on Jacob.  Service dogs are research proven to lower blood pressure, and we have seen at the doctor’s office that Jacob’s blood pressure increases when he is under stress.  Jacob will have jobs to do to care for the dog.  In addition, because I have so many behavioral techniques that I am using with the dog, it just naturally will make me use some of those with Jacob.  Simple things that I should do with him, but don’t always find the time to do such as walking slowly, praising good behavior, correcting negative behavior, self-control in all environments instead of just rushing through to get through it. 

So far, day 1 and 2 with Jacob and Reid have been amazing.  Jacob took to Reid almost instantly.  He hugs all over him and loves on him.  He gets a huge smile on his face each time he walks in the room.  It absolutely melts my heart.  Reid did great in church and all has gone smoothly.  This week Reid will be with me everywhere I go.  On Friday, a trainer from Portland will fly in for the week and train Cret to be the secondary handler and then we will begin tethering Jacob to the pup.  I am so excited to see how that goes! It's all very new and exciting.  

So throughout this new adventure I have seen that in God’s loving kindness, He has given me more work.  He's given me a new hard job and I am truly thankful for this challenge and blessing because I can see it is what's best for Jacob and for our family.  I am grateful because God knew exactly how Jacob needed help and in ways that I didn’t even know.  It made me realize how puny my mind is and how big my God is.  Although an anchor dog would have been ok for Jacob, an autism service dog from this company is so much better.  Through the use of this incredible animal Jacob will start learning and exhibiting behavior that is more appropriate and helpful for his well-being.  We can begin going places together as a family and an added bonus is that Reid may just reduce some of my anxiety that comes along with being a caregiver to a child with special needs.  It amazes me to think of the ways Reid will bless our family.  It amazes me even more that God loves and has provided for Jacob again in such a tremendous way.  I appreciate all of the love and support and kindness so many people have shown us.  It is so encouraging to know that people are rooting us on and so excited about Reid joining our family. I can’t wait to share all about Jacob and Reid’s journey.  God is so good.

Serving Individuals With Special Needs

The CDC just announced an almost 15% increase in the prevalence of autism at 1 in 59 kids.  With a staggering number like that it’s likely that you know someone affected by ASD.  As churches grow and seek to increase the kingdom of God, hopefully that will mean your church’s special needs population will grow as well.  I currently attend a small church plan in New Caney, TX and right now we do not have a special needs ministry as there is not a need yet.  However, one day there will be, God willing, and I know that our church family will welcome these individuals with open arms.  Your church may already have a special needs ministry and especially because the need will likely grow, I want to encourage you to serve those with special needs. 

Working with individuals with special needs can be challenging to say the least.  To say anything else just simply wouldn’t be true.  One of my son’s therapist once told me that she could only work part-time because the job was so emotionally demanding of her.  She’s very passionate about working with individuals on the autism spectrum and has a very upbeat personality.  But being “on” all the time is hard.  I don’t know about the demands of all special needs and disabilities, but I know with autism there are times of extreme joy and then times where things aren’t so great.  There are intense lows and with communication barriers, those lows are hard to navigate.  So why, knowing this, would anyone willingly offer to volunteer in a special needs ministry if they don’t have friends or family affected by disability? 

The Bible offers several reasons.  In Luke 14:12-14 Jesus says, “when you give a dinner or a banquet, do not invite your friends or your brothers or your relatives or rich neighbors, lest they also invite you in return and you be repaid.  But when you give a feast, invite the poor, the crippled, the lame, the blind, and you will be blessed, because they cannot repay you.  For you will be repaid at the resurrection of the just.”

Jesus is describing the type of loving kindness that truly requires nothing in return.  Serving individuals with special needs may not bring instant gratification.  You may not get to hear about the children you serve turning their life over to Lord or singing praise songs just like other kids.  Serving individuals that may not be able to care for themselves in even the simplest ways may not be the most admired or prestigious form of service and you may not see the fruit of your efforts immediately, but I believe that this form of service is an essential part of being the hands and feet of Christ.  Believers are to demonstrate this radical love for people with disabilities and the poor and to any of those that cannot repay them because Jesus shows us that self-denying and self-sacrificial service is God honoring.  Jesus says that those are the times you will store blessings in Heaven. Matthew 25:40 says, 'Truly, I say to you, as you did it to one of the least of these my brothers, you did it to me'. Remember as you share the Gospel with the child that can’t sit still, or a child that is flapping and swaying, that you are loving them as you would Jesus.  It may be more difficult to serve in an area that can be challenging physically and emotionally, but its in those times that you serve when it is messy and ugly and hard that you will be blessed.

Typically, special needs families are coming in to a church longing for a sense of welcome and belonging.  They want a place that they can worship and feel that their children are safe and not a burden.  I urge you to see and serve these families as though you are viewing them through the lens of Christ and not man.  While the world says they are less-than or second rate, the Lord, in His sovereignty, has created them in His image and exactly how he wanted them.  I love when the Lord speaks to Moses and says in Exodus 4:11, "Who has made man's mouth?  Who makes him mute, or deaf, or seeing, or blind?  Is it not I, the Lord?" WOW.  God has a plan for each and every member of the body.  He has a special plan for His people, both you and I and the individuals with special needs in our church body.  If you are looking for a meaningful way to serve the Lord, won’t you consider helping in the special needs ministry? 

^“12 For just as the body is one and has many members, and all the members of the body, though many, are one body, so it is with Christ.¹³ For in one Spirit we were all baptized into one body—Jews or Greeks, slaves or free—and all were made to drink of one Spirit.

¹⁴ For the body does not consist of one member but of many. ¹⁵ If the foot should say, “Because I am not a hand, I do not belong to the body,” that would not make it any less a part of the body. ¹⁶ And if the ear should say, “Because I am not an eye, I do not belong to the body,” that would not make it any less a part of the body. ¹⁷ If the whole body were an eye, where would be the sense of hearing? If the whole body were an ear, where would be the sense of smell? ¹⁸ But as it is, God arranged the members in the body, each one of them, as he chose. ¹⁹ If all were a single member, where would the body be? ²⁰ As it is, there are many parts,yet one body.

²¹ The eye cannot say to the hand, “I have no need of you,” nor again the head to the feet, “I have no need of you.” ²² On the contrary, the parts of the body that seem to be weaker are indispensable, ²³ and on those parts of the body that we think less honorable we bestow the greater honor, and our unpresentable parts are treated with greater modesty, ²⁴ which our more presentable parts do not require. But God has so composed the body, giving greater honor to the part that lacked it, ²⁵ that there may be no division in the body, but that the members may have the same care for one another. ²⁶ If one member suffers, all suffer together; if one member is honored, all rejoice together.” 1 Corinthians 12:12-16

Encouragement in a Church Without a Special Needs Ministry

My husband and I are very blessed to be a part of a church plant in New Caney, Texas.  We came from a church in Atascocita with a faithful Pastor who had a vision to start planting autonomous churches within the greater Houston area.  That church had many missions minded ministries, one of which included the special needs ministry that my son was able to be a part of.  

My youngest of three children, Jacob, has severe autism.  He is almost 8 and has minimal speech, elopes from safety, and cannot attend to a Bible Study for 20 minutes.  Having a buddy system to help him behaviorally and to keep him safe as well as having curriculum adjusted to his needs was an enormous help to us.

So, when we stepped out in faith to follow a preacher that we didn’t know to a church plant that didn’t have a special needs ministry yet or enough volunteers for it, I was a little nervous for Jacob.  Nevertheless, we felt like the Lord wanted us to go, so we followed with eager anticipation to see the Gospel spread through our new Pastor and church.

Being a special needs parent can be pretty isolating at times.  We can’t go to peoples’ homes and attend events very often because of how much anxiety it causes my son.  Even standing in the lobby visiting with people can be hard when my son is trying to dart away.

However, when it came time for our church to start hosting Bible Studies in homes, our Pastor urged us to host one in our home.  This has been a spring of so much encouragement for us.  People come to our home every week and worship God and fellowship despite my son’s frequent interruptions of song and humming.  They laugh if he runs through the room full speed or when he takes a swig of their water or climbs in someone’s lap that he barely knows.  They don’t mind the sounds of every object in the house spinning in the background.  They even understand that we have to deadbolt them in our house with a key to prevent him from wandering outside.

These people coming into our home and seeing our wild and unusual life and still being joyful and present is so encouraging.  We feel connected in a deep and meaningful way.  Being a part of a small group has grown our faith tremendously as we pray for others and as they pray for us.  There have been times of profound sadness and stress when all I could do was cry and ask for prayer and they all stopped and prayed over us.  There have been moments of joy and triumph that we got to celebrate with them and those friendships have strengthened. 

What I’ve seen time and time again is that God is faithful.  He has provided encouragement for us in a way that we weren’t expecting, and we are so thankful for His provision.  God is so good.  We are so thankful.  I pray you find this type of encouragement in your local church.  People who love the Lord with all their heart will love and accept your family no matter how different.  I pray you find believers that can strengthen your faith and that you can serve alongside. 

This month is autism awareness month. With 1 in 68 children diagnosed, most likely you know someone affected by autism.  I urge you to reach out to them.  If you are inspired to find ways to encourage special needs families here are some helpful tips that I have experienced at my church:

• ·         Encourage them to join a small group or bible study and to share their hardships and victories.  Pray for them and celebrate with them.
• ·         If their child cannot be in the Worship Center, create a buddy system where people take turns caring for their child in Bible Study, so they can be free to worship.
• ·         Show excitement rather than dismay when their child arrives at church, especially if their child is engaging in behavior that seems odd or different.
• ·         Look at their child in the eyes and say hello. You may be surprised at how many people turn away instead of looking at individuals with special needs.
• ·         Encourage your children to engage with special needs children.  I promise it will bless them and grow them.
• ·         Go to them if you see them isolating themselves.  I find myself sitting alone with Jacob when he is having a hard day because I don’t want to disturb people. 
• ·         Ask them how you can pray for them and then PRAY.

 

Hope in the “secret world of autism”

This week I watched a video that went viral of an autism Mom sharing about what so many of us feel. The “secret world of autism” is extraordinarily difficult for me at times. So much of what she said spoke straight to my heart. But, there was one thing she mentioned that really struck me. She said that at some point she let her guard down enough to actually pray, but that praying to God does nothing.  It was heartbreaking to hear her say that and even more heartbreaking to see people within the autism community sharing her post and some saying they felt the same. 11 million views later and all that I can think of is how badly I want them to know the truth.  I want them to know that God is faithful even through autism.  

So many people turn to God after their child is diagnosed or when their child’s behavior has gotten so severe that “you realize it’s the last time your life will ever be normal” as the lady explained. 

Our family hit that point last weekend on a trip out town. We realized that short “easy” road trips or our kids basketball games or eating out were never going to be easy again. Through the screams and kicks and panicking, my husband and I looked at each other and without words we both knew...life was never going to be “normal”.  

But the problem with only turning to God at that point is that sometimes we treat God as if He exists for us and not the other way around.  We pray as if, in our time of need, God is waiting to perform miracles and tasks for us like a genie in the sky.  Don’t get me wrong, he absolutely does want to hear from us.  He does want us to come to Him in our desperation, but not just to make our lives perfect or easier.  First, we need a relationship with Him and then we come to Him because He alone can sustain us.   When we seek God solely to fix our problems, we will always end up disappointed.  We must trust God with our lives first, but that doesn’t mean to stop praying for our children.  He can work miracles. He does answer prayers, but sometimes the answer is no. Either way, as His child He WILL work all things for our good and His glory.  We trust Him because we know that God is good and has the bigger picture in mind.

The video made me see that so many people  are needing hope and truth and compassion.  

I know from experience that Autism parents love sharing their journey and their struggles, not for pity, but for a single moment of understanding from others or just to know that people care. Living in such difficult circumstances isolates you from the world.  Knowing that someone cares can be such an encouragement. As Christians, I pray we become intentional about reaching out to families that are extremely isolated, sometimes even  without a church home that can minister to their special needs children. I pray more churches begin ministries that are open to individuals with disabilities.

Most of all, I want Autism families to know that the hope God has to offer and the joy you can have in Christ far exceeds the difficulty of your circumstances. Our hope is in the eternal future with Him in perfect peace not our temporary situation. 

We are cut off from God because of our sin.  God is holy and perfect and we are not. Because of this, we cannot be in right relationship with him.  The Bible says the punishment for our sin is death and eternal separation from God. But God sent his son, Jesus, to live a perfect life, die on the cross, and rise again to pay the punishment for our sin on our behalf.  If you believe this and you surrender your life to Jesus, you can be reconciled with God in this life and for eternity. The peace of being made right with God never leaves you. The hope of eternity with God and his faithfulness is more than enough to carry you through this life and all the trials it brings. Our family will always look different from the “normal”.  We may always be dealing with extreme tantrums, lack of speech, bouts of obsessive spinning and rocking and slamming doors. We experience the stress of elopement and of not knowing how to help him when he is having anxiety in public and we have felt the burden of extreme financial strain due to therapy. Nevertheless, we still have joy and we still have peace. The stressors that are inevitable with autism don’t hold us captive.  Each day we find joy and humor and we start again fresh knowing that God is in control and this is only temporary. 

So I encourage you to surrender your life to Jesus.  Only the Lord can give you a peace that surpasses all understanding. A peace that surpasses the stress of autism. 

New words, new races, new tantrums, OH MY!

There have been so many new changes with sweet Jakey lately.  He is talking independently much more now.  The other night Cret was holding him trying to get him to watch a movie with us, instead of spinning plates loudly in the living room, and Jacob announced, “I don’t want to! I want to go play!”  It was pretty amazing.  He is becoming more vocal and showing us his funny personality.  He is dancing more, reading more, and even adding and subtracting.  He also just ran his very first 1 mile race with the Miracle League and loved it! However, with this new and fantastic independence comes full on tantrums and stubbornness.  When we are somewhere that is too loud, he will make it known that he cannot handle it and there is absolutely nothing that will calm him down.  When his bedtime routine is out of order, he will scream and try to kick and bite me and it takes a very long time to calm him.  He’s always been such a laid-back kid, so these new outbursts are pretty shocking to the fam.  But, with the good comes some bad and we are making progress which is very hopeful.

We recently received the results of the IQ and cognitive evaluation for Jacob.  The results were much worse than we expected, and it hit Cret and I pretty hard.  We see him making so much progress and in some ways he seems far above his age.  I guess we were expecting to hear all of these glorious things about him.  Unfortunately, those tests mostly show deficits.  And in Jacob’s case, most of the tests showed extreme deficits.  In addition to a full detailed devastating description of all the deficits, they gave Jacob new diagnoses. They diagnosed him with autism with accompanying language impairment and accompanying intellectual impairment, ADHD, Language Disorder, Speech Sound Disorder, and Developmental Coordination Disorder.  They would’ve diagnosed him with Selective Mutism, however, based on diagnostic criteria right now any individual with autism cannot also be diagnosed with that.  Its very strange because most doctors believe you can have both, just as you can have autism and ADHD, but that’s another story. 

It was not the news we wanted to hear.  His percentiles were lower than I could’ve imagined and the news hit me like a ton of bricks.  I found out later that it hit my husband pretty hard, too.  He is such a lovely husband to me.  I try to be really strong and educated and helpful when it comes to Jacob’s disability.  Nevertheless, that night as I read the results he said he could see it in my eyes that I just couldn’t hold it together, so he held it together for me.  He read the results and came to me and reassured me, while inside he was feeling crushed.  Only later did he tell me that he cried, too.  I feel so fortunate that God blessed me and our family with my husband.  He does so much for us, there is just no way that I deserve him. 

The next day, a therapist kindly reminded us that while this test was hard to read, it was for his benefit because now we know what to work on.  Also, the test only focuses on what he can’t do, we must remember to always focus on what he CAN do.  I loved that reminder. 

They still believe insurance will begin cutting his ABA hours this summer, so we have been teaching him academics at home.  We are in this strange waiting period right now.  We don’t know what the future holds for Jacob’s therapy and education and we honestly can’t decide what to do next.  So that leaves us here…with either worry or trust. 

God has provided for Jacob so many times, yet I still struggle with waiting and trusting; waiting to see what the Lord has in store for Jacob and for our family.  I wanted to know all the answers immediately.  I want to know how independent Jacob will be when he is older, I want to know if he will have a job, go to a typical school, talk to me like my other kids, get married, have friendships... I want to know what all these stupid terrible test scores mean in the big picture. I want to know now and I don’t want to wait.  And that impatience leads me to doubt and worry and fear instead of trust, knowing that God has put me here right now in this place of waiting for a reason.  I’ve been struggling with this for a while now, but I want to let it go.  So, today I am choosing to surrender my impatience to the Lord.  I may have to choose to do that every single morning because it is so doggone hard, but I want to be faithful in waiting. I want to live life believing that what God has in store for us is better than what my measly brain thinks needs to happen.  I want to be able to wait patiently, even forever, knowing that my hope is in the Lord and not my desired outcome.
 
And when life throws crazy test results at us, and we mourn, I want to run to the Lord in prayer instead of to myself and my worry.  God is so good and today I will choose to trust in Him.

2 Corinthians 4:16-18

"So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen.  For the things that are seen are transient, but the things that are unseen are eternal."