Bolting

Bolting is a common problem with children who are on the spectrum.  Jacob is a "bolter".  No matter where we are I have to have him in the stroller buckled up or be holding him as tight as I can because he wants to run in the opposite direction anywhere we are.  When someone opens one of our doors in the house he takes off running as fast as he can to get outside.  Until recently it hasn't been a huge issue for me.  Today, Jacob has discovered how to unlock the doors in our house. As you can imagine, this is extremely frightening to me. Luckily we have chain locks on our doors, but we have to remember to use them every single time we open them and we have to make sure anyone who is watching him remembers to do so. I haven't gotten to the section on treatment plans for this behavior in my studies yet and was wondering if anyone had any advise on how to start teaching him not to bolt.  I would absolutely love to be able to walk with him into church or different places holding his hand without him trying to sit down or wiggle out of my hand in order to take off running. As frustrating as all this is, I am really happy that he is learning how to do new things. He is also doing amazing in ABA. She is currently teaching him shapes and basic noun identification like umbrella, chair, pencil, etc.

We are heading to the neurologist today as a follow up since he hasn't been in a year and in order to show her the videos of Jacob's unusual head movements. I feel like it is probably just visual stimming, but is like to make sure. Please say a prayer that all goes well. 

Encouragment for today

Today I found myself re-reading a pamphlet I got from church a while back and it just made me so happy because I often need a reminder of Gods truth in hard times.  I don't know the rules of plagerism on blogs but I am going to word for word copy some of this (except adding in my sons name).  I want all of the other moms with children with disabilities to be able to be uplifted by it as I have been today.  This is taken from "Help for the Caregiver" by the Christian Counseling and Education Foundation

"When we use a phrase like, "he's the spitting image of his father," we usually mean that the son displays the physical characteristics of his earthly father.  He looks (and perhaps acts) like his dad.  In a similar, but far more profound way, we resemble the God of the universe, both in his character and actions.  You and the person you are caring for are created in the image of God (Genesis 1:26-28; Psalm 8:4-8).  God made us to reflect his image to the world.  We don't do this perfectly because of sin and disease, but no matter what our disabilities, we never stop imaging God! Jacob is no less an image bearer because of his autism than someone who is not autistic.  The person you are caring for also bears God's image.  The Gospel is about renewing the true image of God through Jesus (Ephesians 4:24; Colossians 3:10).  This process is not derailed by illness and disability.  Instead, God uses these things to make us more like him.  God promises he will complete the work he began in each of us (Philippians 1:6).  This means that God is doing his transforming work in the person you are caring for and also transforming you as you face the challenges of caregiving.  He is perfecting the character of Christ in both of you in the midst of your struggles.....In the Bible, depending on others is the normal way to live.  Please don't suffer in silence; instead ask for help.  Ask family, friends, and your church community to help you.  And then accept the help that is offered.  Even if those who help might not do things exactly like you, they can still be a blessing to you.  Combat your tendency to be "the indispensable one" by sharing your struggles with those around you and accepting the support that others give."

I had a lot going on this weekend.  I was in training for grief counseling Friday night and all day Saturday and I went to a support group with other moms of autistic kids on Saturday night.  All I can say is that it was a heavy weekend.  One interesting thing that I learned in the training was that we are not a society that allows people to grieve.  Companies only give 2-3 days off for the death of a child.  When people are still crying a month later others often wonder "whats wrong with them" or "haven't they given it to God?".  The Bible never says not to grieve.  It says to mourn with those that mourn.  In a similar way, I feel that sometimes us special needs moms feel the need to always put on a strong front for everyone.  We don't want to admit that sometimes we just need prayer, or a hug, or a shoulder to cry on.  I loved meeting with other moms that have gone through similar, if not harder times than I am with my little guy.  However, as I suspected, I left feeling sad.  Some part of me wanted to go there and hear a bunch of people telling me everything was going to be just fine and great and in a year it'll all be ok.  I wanted to hear great stories about insurance and the public school system and how special ed changed their childrens lives, but unfortunately thats not the  case.  I heard from moms struggling with the very same things I am.  I heard about children getting hurt in class and I heard about how the moms whose insurance does cover ABA were so thankful and the ones that don't were so upset.  I did hear about a few exceptional teachers and it wasn't all sad talk, but because it was my first time in a setting with all ASD moms I felt a little overwhelmed taking it all in.  Maybe it was a big reality check for me.

I am so so thankful to have found this group because they are all so kind and they gave me so much information that I will need in beginning the journey through special education in the public school system.  I was able to see how these women unite together in order to encourage each other and share their struggles.  I could openly talk about what I was feeling and I could know that they knew exactly what I meant.  I have to just encourage you to find a group if you do not have one.  Know that it may not all be talk of rainbows and sunshine, but you will be fed with important informaton, and you will encounter people that know just how you feel.  That is blessing to me in so many ways. 

"Providing holistic care to someone whose chronic illness or disability you cannot fix is both difficult and redemptive at the same time.  Let Paul's words encourage you today: "Therefore, my dear brothers, stand firm. Let nothing move you.  Always give yourselves fully to the work of the Lord, because you know that your labor in the Lord is not in vain" (1 Corinthians 15:58).  God has entrusted you with a unique opportunity to minister the gospel of Jesus Christ in both word and deed.  Although you may sometime feel that no one knows what you are going through, God sees you.  he knows all about your struggles and sacrfices and he is with you, ready to help you in your time of need."
 

Gods Word About My Struggles With Autism

These are just some personal struggles that I have faced in this journey and some of God's Word that has gotten me through it all.

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To stim or not to stim?

Stimming is any repetitive movement that is believed to stimulate one or more of the senses. 

I have read a lot of research regarding this very question.  To stim or not to stim? Most BCBAs (board certified behavior analyst) would say not to let a child stim because there is no purpose and it may interfere with everyday functioning.  Grown adults can't stop in the middle of their job for a sensory scratch or to run in circles around the office.  Occupational therapists and other teachers and caregivers of children with autism often allow some sensory input or stimming for a brief time so the child can organize their feelings.  After all, we, as "typical adults, have sensory issues that we address.  When I am cold and tired I love to take a hot bath before bed.  Its very hard for me to go to sleep without one.  BCBA's and some neurodevelopmentalists agree that if you interrupt or don't allow the stimming it will eventually stop all together and the child won't desire it anymore either.  I often wonder if there is any research merging ABA with some sensory input.  What if the child was able to learn more or pay attention more if they had brief sensory input sessions or time to stim a little to organize their feelings?  Anyways, these are my ongoing questions regarding Jacob's stimming.

Update on Jacob's health and development:

Lately, Jacob has developed an obsession with doorknobs.  He loves them.  He grabs them and wiggles his fingers all around them, he smiles at them, he looks into them and slowly walks backwards away from them all while making sounds.  I wonder what in the world he is thinking.  I thought he was acting like that because he saw his image in them, but he does this even with the ones that aren't shiny.  Maybe since he sees his reflection in some of the knobs he feels like a little person lives in all of them.  I don't know, but he is absolutely infatuated with them. The kid loves doorknobs.  He is still playing with his shadow all of the time.  He holds his shadow's hand and runs all around the house.  Its pretty cute.  Recently, he also started screaming and slapping his stomach when he is upset or told no.  He has not yet addressed Cret and I as mommy and daddy, but can distinguish our individual pictures from other family members in therapy when asked to pick which one is mommy or daddy.  He is fully requesting objects with his pecs in therapy and is about to start learning verb pictures. He hasn't generalized the PECS system to the outside world yet, but it will happen soon.  He still sometimes plays with the PECS instead of using them solely for communication. Jacob is now requesting that his sister chase him and then scream "BOO" in his face.  He requests it by dragging her around the room and sitting down in front of her.  He loves to play chase with Tyler and Jordan.  He gets very engaged and looks directly at them.  Although he is not pointing for things yet, he does drag us over to whatever he wants, whether it is the fridge or the Ipad.  He loves books that make noises and loves driving cars around.  He still puts everything in his mouth.  I feel like that is why he is always so sick.  I can't wait for him to be out of the chewing on everything stage.  He still runs in patterns and circles and is still having the strange jerky head movements.  His ABA therapist believes it is visual stimming because when she has observed these movements it was always after looking at light out of the side of his eyes. He won't take a nap or go to sleep without his heavy blanket.  We often have to hide it from him because he wants to roll around on it all the time.  He is still very tiny.  He is now 31 months and can easily fit in 12-18 month clothes.  We have inquired about his size often at the doctor and they have said that he may just be a very small guy.  I feel like there is something more to it, but only time will tell I suppose.  He is singing more and more songs.  Some of the words sound very similar to the actual words and some sound more like beeps, but he is trying so much more.  His newest song is Twinkle Twinkle Little Star which sounds like kweekul kweekul eeeeee uuuuu awe.  Its pretty darn cute.  So thankful for this little guy and the progress he is making.  He will occasionally answer with "yesh" when I ask him if he wants certain foods that I know he loves and then say, "Tell me yes, Jacob".  Its amazing to hear him say that, however, I think he would mimic any sound I told him to say in order to get the food he wants.  HAHA he is a good eater.  What that does mean is that the therapist has taught him that when we say,"Tell me....." it means to repeat what he said.  That is good news.  It may take him a while to catch on to what yes means, but I have faith that he will.

Anyways, I just wanted to post an update about his behavior and progress.  Feeling blessed that he is still so lovable and sweet and happy.

Our vacation and the beginning of special ed

 This was in Galveston, TX.  Its not my favorite beach, but the kids had a blast.  It was Jacob's first time to see the ocean.  He was captivated.  The water was freezing, yet he kept running back to it.  He loved the sand.  It was wonderful to watch the family enjoy Gods amazing creation. 

 Jacob would stand in one spot until his feet got buried deep in the sand and then I would pull him out and he would stick his feet right back in.

 Any time we tried to pull him back a little he would edge further on with all his strength.  LOL

This was at the new pirate museum in Galveston.  It was pretty neat for the bigger kids.  Jacob had no interest in it at all.

 At the rain forest cafe Jacob loved all the excitement.  The water ride was a little scary, but he didn't cry at all.  He just looked around in amazement.

Jacob loved all the lights at the Kemah boardwalk carnival.  He didn't ride any of the rides, but loved to watch the other kids.

 

This was our first mini vacation with the entire family.  It was a much needed break away for our family and boy did we have fun.  We just went away for one night and one full day, but it was packed with fun for the kids.  Cret and I were so happy when we got home because Jacob did well enough that we know we can occasionally go places like that with him.  Its important to us to be aware of Jacobs needs while also letting the other kids experience some normal fun activities.  We feel so blessed to have had some time away. 

 

Today was the beginning of our adventure with the public school system for Jacob.  Jacob will begin special education in the fall of 2013.  I have been very nervous about the whole thing because I have heard so many stories about budget and teachers and parents that I just did not know what to expect.  Today's meeting was an informational meeting to introduce us to the team that will be working with Jacob doing his evaluations and placement and our ARD meeting.  I was nervous to meet with these women because I didn't know how they would treat us and Jacob.  I was fearful that decisions would be made based on budget rather than Jacob's individual needs. 

 

When we came into the meeting they began to give us information on the different programs offered by the district.  I asked them about the differences in programs and after they explained them it seemed obvious that Jacob will likely qualify for the more intensive programs.  The programs offered in Humble Independent School District include

Speech Therapy-this is for children with only some speech problems and you go by appointment

STEPS-This is for children whose receptive language is on target but they need help with expressive language

PPCD-This is for children with different disabilities

STEPS PLUS- This is for kids targeting their expressive and pragmatic skills, such as social issues and initiating and requesting

SPEAK-This is a specialized program for children with ASD

SCD-This is for children with a severe communication disorder

 

Mindy, Jacob's ABA therapist suggests that Jacob should be in SCD.  After discussing what each program does and what aspects are necessary to qualify a child for a program my husband and I also agree that SCD is appropriate for Jacob.  I hadn't realized how severe Jacob was until I asked about the STEPS PLUS program. A friend of mine had her non verbal autistic child in that program and loved it.  They said that program would help with initiating speech and making friends.  Well, I knew right then that Jacob couldn't do that because he has no idea what a friend even is.  He doesn't know what a cup is.  Regardless, as I spoke with the ladies they assured me that their evaluations are very detailed and they will place him exactly where he needs to be.  They also highly suggested that I let Jacob take the special bus to school.  They said that it comes to our front door.  Two adults are on the bus at all times and there are car seats and seat belts.  I immediately said, "I plan on taking him to school.  I am a home school mom at heart, so the idea of putting him in school is hard enough much less sending him away on a bus."  The idea of sending him on the bus at this age is kind of heartbreaking to me.  I also don't know how long his commute will be if they have to pick up a bunch of other kids.  They told me that the school bus is not only fun for the kids, but a new learning experience and a way to transition the kids.  They highly suggested I let him take the bus instead of driving him to school.  Does anyone have experience with this?  I love to hear moms opinions both ways.  Jacob currently does not have transitioning problems, but I can see how maybe the bus is another good social experience for him.  At this point I do not see myself sending him on the bus.

 

So as a friend suggested, we were very open and honest and not afraid to tell them our real feelings.  At one point Cret asked if the budget was considered in deciding where they would place Jacob.  They told us absolutely not.   Its scary to think that the education your child gets may be based on financial issues, but of course it has to.  I told them that we were very involved parents and this was not a day care for us. Some teacher friends of mine told me that some parents use special ed as day care and don't really care about the program at all. I explained that we intended on helping the teacher in every way that we could.  I told them that I would be room mom, or bring crafts, or snack or anything needed.  They asked me about my education and how Jacob got diagnosed so early.  They told us how important it is for children to get early intervention.  Right about then, Cret started getting very emotional.  Its hard to explain how it feels to be at this point with your baby.  All of a sudden its all very real.  Anyways, he was thanking them for their dedication to our son and then they told him how nice it was to see a couple so united and getting along so well.  He grabbed my hand and told them that it was all thanks to his wife.  Well, as you can imagine, that made me start crying.  I told them that this has been an emotional journey for us.  They all were just so sweet to us and I couldn't be happier with the way the meeting turned out.  I think I am ready to for the evaluations. 

 

Our next step is a health exam at Hidden Hollow Elementary School. In March we will begin his evaluations, which will take place over a few days.  Afterwards, they will meet with me to discuss the program that they plan on enrolling Jacob in and then we will have our official ARD meeting the week of his birthday in June.  He will begin school in August. 

 

Please be in prayer for the teachers and that their tests will sufficiently diagnose and evaluate Jacob.  Please pray for Cret and I as we begin the special ed process and for our other children who I know will be confused as to why Jacob will be leaving the house each day.  Please also pray for Jacob, that he will continue learning and growing and developing and that the transition into school will not be too tough for him.

 

 

Support

 Do you have a support group?  I don't belong to any kind of support group for parents with autistic kids and actually I haven't really thought about joining one or trying to find one until now.  Last night I was at a girls night hanging out with some friends when the topic of special needs and children with delays came up.  One very sweet lady was talking about her 21 month old son and his speech delay and when I asked her questions that would point to autism like "does he point, does he understand what you are saying?" she said yes and that she knew it wasn't autism.  As I listened to her display distress about not knowing what was going on with her child I couldn't help but to think about Jacob.  I tried and tried to change my focus, but the tears started pouring out as if I just realized that my son, who was 31 months can't point and can't understand us.  He hardly understands anything that we say.  I know he is beginning to understand simple nouns like shoe, kiss, or his name, but anything beyond that is totally unknown to him.  I left the room in total and utter embarrassment for crying about my child as she was pouring her heart out about her child.  I don't know what happened.  Its like a flood of emotions came over me.  I was weeping in the corner of a room, wondering what the heck I was crying so hard about.  Its not like I just realized he was autistic.  I think I have been bottling up some sadness and just focusing on information and school and not talking about his autism.  I don't know if I need an attitude change, heart change, or just a hug, but I do know that I need to be talking about this much more so that I don't explode in tears during a random conversation that isn't even about Jacob. 

 

 Can you relate?  I know that I need some help with these emotions.  I don't know that I will ever in my life be able to completely get over the sadness that comes with having a child that is disabled.  Yes, I hear many people say that autism is a gift and that it is wrong to want to change him, but I am sorry I don't want my baby to have a difficult life. He is beautiful.  He is absolutely a gift from God.  I will always love him no matter how delayed or disabled he is and I do accept him.  But as my friend Allison wrote in one of her journal articles (paraphrased)...you would love your child that has any other illness or delay or disability, but that shouldn't stop you from wanting to help make their life better or easier. I don't want him to have to struggle with saying my name, or asking for milk, or making friends.  I don't people to make fun of him.  I don't want him to have to go through hours and hours of therapy to just learn how to sit down.  Its sad.  Its incredibly sad to watch him spinning and slapping himself and jerking his head back and forth.  But, fortunately for me and for Jacob we have a God that is so much bigger than our struggles.  A friend later reminded me that.  God can miraculously heal Jacob in an instant if that is what will bring Him glory.  If not, although sad, I must trust that this is what's best for us.  So, I am going to try and deal with some of these emotions and feelings.  I need to at least be talking about them with someone every once and while.  I am sure there are moms out there that can relate to me and that understand what an emotional toll raising a child with a disability can be.  I want to encourage you to find a group of ladies or a friend to just be able to call and cry with or talk to.  Try to find someone that can pray with you and give you Christian advise and encouragement.  I am so thankful for my friend who also reminded me that it was ok to still have hope that Jacob will one day be able to do all the things that I dream for him and to defy the odds.  She sent me a little video to remind me how big of God we serve.  http://www.youtube.com/watch?v=0p3tM-rBfkQ&sns=em I am constantly praying for parents who are parenting a disabled child right now.  I pray that if you do not know the Lord that you will come to have a saving  relationship with Jesus.  Please email me if you'd like me to specifically pray for you. 

One last thing, if I have received an email from you and have not written you back, it is because I do not have your email address and when I try to reply from this blog it wont let me for some reason.  Please send your email address in your letters. 

Tourette Syndrome

Wow.  Jacob has come a long way in the past few months.  He is mimicking so much now.  He is motivated by music in a way that baffles me.  No matter what we say to him he will mimic it, however,  he mimics the tune of what we say and not the actual words.  My sister in law jokes and says it sounds like he is talking or singing in Morse code.  Its very cute.  I just think that it is fascinating that he loves music so much.  I find it interesting because virtually all the books I have read on autism state that most autistic kids are enthralled with music and make connections with music and can play instruments or sing perfectly in pitch.  I feel so thankful for his love of music.  I love the little guy.  He is making so much progress in his ABA therapy.

I want to ask for prayers in the coming weeks for our family.  Most importantly, we are taking Jacob to the neurologist for some testing.  He has been having some strange sharp movements with his head and arms that are unusual. They are unlike his usual repetitive behaviors or weird hand movements.  I have sent a video of these movements to several moms of autistic children, a few moms of children with Tourette syndrome, a few therapists, and a pediatrician.  For the most part they say it looks just like stereotypical Tourette Syndrome tics.   I want to have him checked out and make sure there are no seizures involved.  Its a little scary and I would very much appreciate prayer in the matter.  I have read that many children with ASDs also have Tourette's and most have seizure acitivity.  The movements I have observed do not resemble seizures.  The pediatrician who viewed it said in that particular video it looks likes tics and does not look like seizures, but that I need to take him in to get it checked out.    Many people do not know that seizures are extremely common in children with autism.  If you suspect seizure activity you should have your child checked out by a neurologist.  When Jacob was checked out as an infant his brain showed no damage or seizure activity, so I am hoping that is still the case.  I don't know much about Tourette's, but plan on doing some research in the upcoming weeks since it looks like that is the more likely cause of these movements. 

Secondly, tomorrow is the beginning of my 2nd semester in graduate school.  I am having very mixed feelings about this.  My first semester turned out to be such a blessing.  I managed to get a 4.0 GPA!  School did not interfere with my family or church life and that made it so easy to do.  This semester will be quite a bit more challenging.  Obviously I don't plan on it interfering with family or church, but I know I will have zero social life or extra time.  Also, if I am not careful with time management it could end up taking up family time because I am also homeschooling my preschooler and 4th grader.  In one of my classes I have to observe autistic children in a clinical setting under the supervision of a BCBA (board certified behavior analyst) and develop my own assessments and treatment plans, which is great experience and an awesome learning opportunity.   That project is in addition to all my reading, test taking, journal reviewing, etc.   I am needing prayer in order to be able to manage my time in a way that my family and true priorities do not suffer at all from being in school.  After reading my class objectives I am sure that this semester will be the hardest I have ever had. I am confident that this is the right decision for my family, though.  We have prayed about it and know that this education will allow me to understand how to help my son and other moms with children with ASDs.  Since there are only 4500 BCBA's in the world, the need is very great.  Many countries do not have any BCBA's at all and would greatly benefit from seminars on behavior.  Autism is a rising problem all over the world.  I will have the credentials and experience to speak to groups of people about developing treatment plans for their children.  I want to have the education to be able to go and teach people how to help their kids learn and how to modify behavior and teach them and most importantly tell them about the hope they can find in Jesus Christ.   I want to tell parents about the peace that I have from the Lord and that they can have that, too.  I want them to know that the Lord is who gets me through each and every day with hope and joy regardless of Jacobs successes or failures.  That hope is not in my education or in my circumstances.  I want to tell people that if Jesus is the center of their life, their marriage, and their parenting that they WILL be happy and successful.  Success will have a different meaning. So, I am just asking for prayer in all of these areas. 

The last thing I wanted to post was a question to those moms of autistic children.  When do you start potty training?  It is obvious to me that I can not start now, even though he is 2 1/2, because Jacob is tiny and could not even get on to the potty.  He also would play in the potty water or try to get into the water if I let him get close to it and can not tell me when he has to go to the bathroom.  LOL I guess we are nowhere near potty training time.  I am just wondering when people start?  I would love feedback in a post or emails regarding this.  I have a few friends still struggling with potty training at 6 and 7 years old.  Is this typical?  Maybe I should start with a toddler potty that has no water in it?  I don't want to totally stress him out if it seems too early.  I just want to know when people normally decide to begin. Thank you in advance for any advise.