Jacob's future

Jacob has been pretty sick lately, on and off for weeks and weeks now.  I think it must be allergies even though Claritin isn't giving him much relief.  We are only a few weeks away from beginning my training in ABA therapy so that I can start helping Jacob more.  I am so excited that I will finally have directions and guidelines to follow that are strict and precise.  Lately, I have been seeing some decline in his attentiveness.  Its scary.  I want to only see him growing and getting better.  I can't help but to wonder if I am doing something wrong or not enough.  Honestly, that is not something I say lightly, I truly, with all of my heart, question myself daily.  He still has no words and no communication whatsoever, well besides screaming or reaching.  We are consistently signing the basics like milk, more, and bye bye but he won't sign anything.    He has seemed to really slow down on the carpet eating.  As far as behaviors, he still stands on his head and spins a lot.  He has begun a new obsession with coat hangers and sitting in baskets.  The child can not pass a coat hanger without completely freaking out.  In fact, this picture was from the other day when I was searching around for him and found him completely silent in this clothes basket in my room.  LOL He has about 5 new teeth.  They all decided to come at once, which was so much fun.  Haha.  He is waking up a lot in the middle of the night still.

 Fortunately, one of my friend's moms (from elementary school) purchased Jacob a weighted blanket and lap pad.  This couldn't have come at a better time and I am still in awe that the Lord put it upon her to help us out like that.  He loves his blanket and is still getting used to it and we have just received the lap pad and plan on trying it soon.  I still haven't figured out the proper way to thank them for those items.  How can you, ya know?

A friend sent me a link with some Bible verses in it and this one kind of made me think...

 Train up a child in the way he should go;
  even when he is old he will not depart from it.
(Proverbs 22:6 ESV)
Until recently, this verse was simple to me. Raise my children to know the Lord and when they are all grown up, even if they stray a little, they will always come back to Jesus. I think most Christian women see this verse and seek to raise their children to know the Lord.  Its a simple promise, yet a vitally important one. 

However,  with Jacob I still find myself wondering how can I be the best mom that I can be for him? What therapies should we try and what diets might help him? I was not prepared to be a mom of a special needs child.  At times I feel helpless and I feel like I can not give Jacob what he needs.  Just two days ago when my husband took Tyler and Jordan out and I was left with Jacob, I started trying to play with him and doing some therapy type playing and he just wasn't having it.   He was violently throwing himself all around, wouldn't sit still, wouldn't look at me in the eyes.  It was frustrating and then devastating.  I was crying my eyes out by the time my husband got home.  Its a haunting feeling to have a child with special needs sometimes.  Does that sound weird?  I guess I mean that you ALWAYS think about it when you are with them and most of time even when you aren't with them.  It's always a lingering thought in the back of your head.  Somedays more than others, but its hard.  Its really hard to not be able to "fix" them.  To constantly be scared that you are not giving them what they need.  I guess I forgot that this Bible verse applies to Jacob, too.

As I pursue God's will for me and for my family I come across this verse again. This verse is a promise from my Heavenly Father. This verse tells me exactly what I need to focus on in raising ALL of my children. Train my children in the way they should go and they will not turn from it. God makes no mistakes. When this was written, this was written for my family, too. My purpose in parenting is to teach my children about the love and sacrifice given through Jesus Christ on the cross. I am to teach them about their role in glorifying God's kingdom. In the end, do I want to have the smartest, most successful child in the world or a child who loves and fears God in Heaven and a child who can have unimaginable peace and joy even through the hardest struggles?  Of course everyone wants their children to be successful, but this verse took a heavy weight off my shoulders. God wants me to train my children to love Him. I do not need to worry about what Jacob will or will not be able to accomplish as a person with special needs. I don't even need to worry about all the successes and failures in my other children's lives.  It is my role to teach them and help them as best as I can in all ways, but the Lord does not require us to raise only brain surgeons.  He requires us to raise children who love and honor and fear Him. 

I know I have said it before, but I guess I need to keep reminding myself that the most important thing I can teach Jacob is how to love Jesus and how to serve God in his own special way.  I know that if I do, he will never turn from God.  What an AWESOME promise! I can have peace, real peace about Jacob's eternity.  What more could a mother ask for?

Encourage your children!

A couple weeks ago Jordan came home from Super Friday, a fun school only on Friday's for homeschoolers to take cool classes with other kids, and told me an awesome story.  She told me that she took my advise and sought out a friend at snack time that was sitting all alone.  She said that the little girl looked younger than her and had no friends. She asked the little girl to sit with her and she has been sitting with them at snack time ever since that day.  Jordan told me that this little girl has a speech impediment.  She said that when they first sat together the little girl never smiled and would hardly talk, but now she sees her smile sometimes.  A while back I had the overwhelming desire to teach Jordan to be compassionate towards special needs children and to teach her to seek out those who may be having a hard time making friends.  Of course Jacob was the trigger for that.  I want my children to love people with special needs.  I want my children to show them compassion and genuine friendship despite their differences. These kids may look weird or different or talk funny or say strange things, but we have to show them Christ's love.  So I am on a mission to help my children see these people through God's eyes.  They are fearfully and wonderfully made, just like you and I, and God has a special and unique plan for them.  So I wanted to blog this and encourage you to teach your children the same.  The funny thing is, people who don't have special needs children in their lives or work with them on a constant basis don't usually think about these kids or to talk much about them with their own kids.  So I sincerely ask anyone reading this to educate your children about people with special needs and to show them how to be kind and friendly.  That is something that can, at times, be humiliating if others are making fun of them or hard because some special needs kids are hard to get along with, but the character that can be built out of teaching that kind of compassion is priceless.  Your one child can make all the difference in the world to a kid with zero friends and a hundred bullies.  I know that I am going on a rant about this, but it literally tears at my heart to hear stories of children that are so lonely and hurt by bullies or people who are just scared of them because they are different.  I watched a video today about Asperger's Syndrome that I thought was very informative about their thinking and wanted to share it.  Please join me in teaching our children how to interact with special needs kids.  People with down syndrome, autism, physical disabilities, and other disabilities are also made in God's image.  Do you ever think about that?  I know that I find that so encouraging and so awesome.  My son with autism, who spins in circles and eats carpet, who can't speak or communicate, but who loves on me and smiles so sweet, HE is made in God's image.  He is God's creation, here on earth in order to bring glory to God! That is so AWESOME!

Here is the video if you'd like to view it...

http://youtu.be/WAfWfsop1e0

Jacob's official diagnosis from neurologist: macrocephaly, speech and language disorder, encephalopathy, and severe autism

Jacob's neurologist sent his official diagnosis to his pediatrician today.  She diagnosed him with macrocephaly, speech and language disorder, encephalopathy, and severe autism.  It took a long time to get his official diagnosis because they were testing for medical conditions before they labeled him.  Hopefully, with treatment, his diagnosis of autism and speech delays can change in time, but I am not guaranteed that anything will change. I am glad we have a diagnosis so that we can possibly get more help for him, still it is hard to hear it officially.  Why?  I have no idea. It just is.

I cried again about it.  I am sure no one would blame me.  I started to worry about his therapy and development, but almost immediately caught myself and opened up my Bible.  Instead of worrying, I am going to be thankful for an amazing neurologist that really cares for Jacob, for unbelievable friends who are helping me through this and offering help that I never would have asked for and for a God who knows Jacob by name and loves him and keeps providing just what he needs.  I am not going to focus on Jacob's autism today.  Obviously, I will care for him, but I have to be careful as to not make all this my main focus some days.  I am going to redirect my thoughts to Jesus.  I know I have to think about Jacob and his therapy and what's best for him, but my main focus and love should be on God's kingdom.  After reading Philippians 4 again today I was reminded to rejoice in the Lord, pray constantly with a heart of gratitude, and to always remain thankful regardless of my circumstances.  I know that God will give me peace. 

Matthew 6:31-34 (ESV)
 Therefore do not be anxious, saying, ‘What shall we eat?’ or ‘What shall we drink?’ or ‘What shall we wear?’ For the Gentiles seek after all these things, and your heavenly Father knows that you need them all. But seek first the kingdom of God and his righteousness, and all these things will be added to you.
 “Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Sufficient for the day is its own trouble.

My Valentine

When a precious baby is born you can't help but to wonder...."Will they be smart, funny, pretty? What will they be? Who will they marry?" This past Valentine's Day that very question came to my mind. Will Jacob ever have a Valentine? Will he ever be married? It wasn't an overwhelming thought. I didn't get depressed or cry. I just couldn't shake the question. My mind wandered to friends and families with children that I know will never be married, they won't ever have a family. I thought to myself, "What would I say to them if they called me and asked me what to tell their loved one about that, or how would I encourage them when I myself feel scared and sad about that very thing?" Now, I know this is jumping the gun a bit. Will Jacob get married? I don't know, but if he is statistically on target then catching his AUTISM early gives him a big chance of mainstreaming and possibly being "NORMAL" enough to find love and get married. BUT....what if his autism is severe. Now I don't say that with anxiety and fear....Its not a "what if" I am going to panic about and stress on, but it is a "what if" then I need to have a plan. More so, I want to know what I'd say to that mom who knows for sure that her child will not be mentally or physically able to be in a marriage. Of course, I am not perfect and I'm sure whatever I say can be argued, but I do have a plan for me. I want to share this plan for those of you that wonder this very thing.

Psalm 139:13-14
13 For you formed my inward parts;
you knitted me together in my mother's womb.
14 I praise you, for I am fearfully and wonderfully made.
Wonderful are your works;
my soul knows it very well.

Romans 12:1-8
1 I appeal to you therefore, brothers, by the mercies of God, to present your bodies as a living sacrifice, holy and acceptable to God, which is your spiritual worship. 2 Do not be conformed to this world, but be transformed by the renewal of your mind, that by testing you may discern what is the will of God, what is good and acceptable and perfect. 3 For by the grace given to me I say to everyone among you not to think of himself more highly than he ought to think, but to think with sober judgment, each according to the measure of faith that God has assigned. 4 For as in one body we have many members, and the members do not all have the same function, 5 so we, though many, are one body in Christ, and individually members one of another. 6 Having gifts that differ according to the grace given to us, let us use them: if prophecy, in proportion to our faith; 7 if service, in our serving; the one who teaches, in his teaching; 8 the one who exhorts, in his exhortation; the one who contributes, in generosity; the one who leads, with zeal; the one who does acts of mercy, with cheerfulness.

1 Corinthians 7:32-35
I want you to be free from anxieties. The unmarried man is anxious about the things of the Lord, how to please the Lord. But the married man is anxious about worldly things, how to please his wife, and his interests are divided. And the unmarried or betrothed woman is anxious about the things of the Lord, how to be holy in body and spirit. But the married woman is anxious about worldly things, how to please her husband. I say this for your own benefit, not to lay any restraint upon you, but to promote good order and to secure your undivided devotion to the Lord.
　
Soooooo what do these Bible verses mean to me? How do they apply to my son if he can not marry, or if no one will marry him? How will I explain to him if he asks if he can get married, but is not mature enough mentally to marry or live alone?

I will say with confidence that these Bible verses prove to me that his autism is no accident. God made him fearfully and wonderfully. God has an exact and distinct purpose for his life. I will trust my God and the abilities he has given my son and I will honor God in helping Jacob to find his purpose in Christ. I will help him learn how to honor and love God and hopefully help him to focus on how he can be used to serve the Lord. I will try my hardest to help him seek the things of God and not of this world. Money, relationships, education, these things mean nothing for our eternity. God didn't create everyone for marriage, no not even all the "normal" people.

 My heart deeply and sincerely goes out to the moms dealing with this, but I am hopeful that God has some even more amazing gifts and experiences and plans for your child. Do not judge your child's happiness on what this world has to offer. Trust that God has much more to offer to them than marriage.

I love my baby boy. I pray he will find a perfect spouse and that I will have sweet little grandbabies, but I am going to prepare myself and him for either way.

A new year...how will God use us?

"And his disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” ³ Jesus answered, “It was not that this man sinned, or his parents, but that the works of God might be displayed in him." John 9:2-3 




Sometimes I ask myself, "Did I do something wrong, or rather, which of the many things that I have done wrong, have caused Jacob to be autistic?"  I wonder if he is being punished for my wrong doings.  Isn't that silly?  Isn't it so true though?  We ask ourselves or God about the sad or misfortunate things going on in our lives and we often wonder if its a punishment.  I guess sometimes it could be, but today as I read this verse I quickly retracted those thoughts.  Instead, I am going to ask myself," How can this diagnosis bring glory to God? Am I allowing God to use us and this or am I standing in the way by chosing to see it as a punishment or problem?   Do I trust God and what He is doing in our lives?" 

Recently, in a Bible study we were discussing how God blesses us.  Most often we think of money or materials as our blessings, when God is just so much bigger than that.  He blesses me with hardships in order to build character and glorfy Him.  If I can stay focused on that then I can remain hopeful that His plan is the best for us and I don't have to feel guilty or as if I am not doing enough.  God's way is perfect.  I am accountable to God for my attitude and I just can't keep letting my attitude be that of guilt and sadness.  I think I need to keep reminding myself of that. 

I recently started nannying an 8 week old in order to pay for Jacob's ABA therapy.  Unfortunately, the money wasn't nearly enough and we couldn't keep him in it.  Not to mention I spent the entire day caring for the baby and not accomplishing much of anything else with my children.  So, I am no longer nannying and of course the overpowering feelings of anxiety and stress are trying to creep back in.  What will come of Jacob if he isn't in ABA therapy?  There have also been so many people lately giving friendly reccomendations of gluten free casein free diets, natural diets, oils, medications, chiropractors.  Its overwhelming.  When you read blogs of parents with autistic kids you find a large amount of families who have tried all this and still their kids are severely autistic and a couple who have tried these things and seen miraculous results.  However, I can't do it all.  We don't have the money to do it all.  A friend of mine who is a speech therapist and works with autistic kids all the time recently told me, "Allison, many kids who have autism only recieve an hour of speech therapy a week.  Some people don't even like ABA because it makes their children seem robotic."  While I still love the therapy he was getting, that comment kind of just brought me right back down to earth.  Jacob will be ok.  It may mean that I have to work harder, but that's ok too.  If you can't provide all of the therapies and such that you want for your child please know that its ok.  We have to connect with each other and discuss what works and what doesn't work and just go from there.  This road is long and hard, but you are not alone.  I pray about that everyday.  I am so thankful for the mommys that have befriended me that have children with disabilities.  Its unlike anything I have ever had to encounter before and its so nice to simply know that I am not alone.

Since it has been a full month and a half since I blogged I wanted to kind of list out Jacob's accomplishments and things that we are still working towards.  I was surprised to hear the other day that Jacob will likely be attending special education at age 3.  I guess when I deal with him everyday and see how happy he is I think its not as severe as it really is.  Denial.  Such a weird thing.  Anyways Jacob is 20 months now.  Some people tell me not to compare him to average children or their milestones, but I disagree.  The reason I have to is because sometimes I get in a rut thinking he is ok and pretty average and then when I hear that he needs special ed I get all worked up again.  Plus for all my family out there reading this I like to let them know where he stands in comparison so they can understand his issues a bit better.  I also love to know when he is on tract. 

He still has not said his first word.  He babbles a few sounds.  Mostly vowel sounds, but occasionally dada (with no meaning behind it).  I believe he is supposed to have about 200 words and small 2-3 word phrases.  Although he wiggles his fingers occasionally when we wave bye bye he still won't actually wave to anyone when they leave.  He can't recognize objects in a book or point to them when asked, but does try to mimic sounds sometimes.  He has started eating carpet every day and now, in addition to standing on his head, he drags his head along the floor.  I suppose he really likes the pressure.  We are giving him pressure massages more.  He doesn't play pretend, for instance he won't put a play phone to his ear or make Buzz Lightyear fly.  He still holds an object and just kind of stems on the part of it that he likes to stare at.  He loves lights and light up toys, especially red lights and will put them really close to his eyes and gaze at them.  He is very mobile, climbing all over everything, and seems to be a little more aware of falling and getting hurt.  He can climb up the stairs or onto the sofa and seems to be pretty good at getting down.  The biggest praise that I have is that he has started eating almost everything.  If it can be cut into tiny pieces, then he will eat it.  This has lifted such a huge burden off of me.  I love to see that boy stuff his face with food!  Our biggest dilemma is that he has started biting more.  When he is in loud places, especially with lots of people around he bites.  This could be because he is scared or because he can't say stop or I don't like this.  It may be his way to communicate to us that he is uncomfortable.  He doesn't do it when he is mad, like when his brother steels a toy, it is mostly just when it is really loud or crazy.  Usually its my shoulder or his dad's shoulder that he bites, but this past Sunday he was biting kids in his class.  When the poor teacher told me about it she said,"Im not trying to make you feel bad I just wanted to make you aware that Jacob was biting the kidsin class today."  There were a lot of kids that day.  So what did I do?...I started crying like a little baby in the middle of the hall.  Poor teacher.  I hope she didn't see me.  I guess I was having one of those moments where I didn't even know what to say or think.  I can't say sorry, he is doing that because there are a thousand kids and he is freaking out and scared and can't talk or tell you.  If someone else's child was biting I would be upset.  I didn't know if I should find him a special ed Bible study or what.  Lots of things to think about I guess. I am not going to cry about it again though.  At least that's the plan.  I need to find better outlets for him and hopefully it will get better. 

Thankfully, I feel reassured that my God made my child this way for a greater purpose and with that I can find peace and rest.  Jacob is made in His image.  God has a glorious plan for my life and for Jacob's.  So today I will ask,"How will you use us, God?"

 "For I know the plans I have for you, declares the LORD, plans for welfare and not for evil, to give you a future and a hope."  Jeremiah 29:11

God's AMAZING plans

I was thinking about Christmas this year and how to make it more Christ focused for my kids.  I started thinking about the books we could read or ways we can give to people in need.  I love this time of year.  There are so many activities I want to do to share with them.  Then I started thinking about Jacob and how I can teach him.  He doesn't understand the word mommy.  What will he be capable of learning when he is older?  I started thinking about how difficult it may be to describe something to him that he cannot see.  I hear that autistic and asperghers kids take EVERYTHING very literal and therefore things like faith are hard to explain. 

Later I saw a video of a blind autistic child singing to a huge group at their state capital.  He was singing "Open the Eyes of My Heart Lord".  http://www.godtube.com/watch/?v=KGYWKLNX I couldn't watch it without weeping and boy when I say weeping that is an understatement.  Having a special needs child has made me into such a sissy.  I can't even watch commercials without crying.  I wasn't sad, though, this time.   I wasn't thinking, "poor baby he is blind" or "that's so sad he is autistic".  All I could hear God telling me was that He has this AWESOMELY AMAZING plan for Jacob!  Its like I knew in that very instant that God can do whatever He wants through Jacob no matter what disability or struggle he may face.  God is being glorified so magnificently through this 10 year old who is blind and autistic singing to God to open the eyes of his heart, what can He do with my Jakey?!! I felt in my heart at that very moment that I better not let anything keep me from sharing God's word with my baby.  He may not understand the word mommy, but God can do anything.  So I am going to stay faithful to my Father and teach Jacob everything I can and sing to Him everyday about Jesus and I know with all of my heart that God will use my precious baby in some way to bring Him glory.  I have so much peace about that.  What a blessing God has given me this Christmas season.  He is continually blessing me and I am continually in awe and so very thankful. 

As far as what's going on with therapy and so forth we have stopped Jacob's ABA temporarily because we are out of funds for it.  I did start a job and will begin the therapy soon I hope, but it isn't enough for much.  Somehow I have to believe that one day children with no coverage for autism will be able to get help at an affordable cost.  I really see changes from ABA so I know it works, but we can't afford to spend every dime we make on therapy.  I have been considering getting the training and trying to do it myself.  I am just curious as to how to handle my other kids during that time.  I am currently still trying to teach Jacob simple sign language and working on all the basics with him.  He is an usually happy baby and that makes things so so much easier. 

 I was sent a poem by my mom today and it really touched me.  Thought I'd share...



WELCOME TO HOLLAND

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

Jacob's progress

Jacob has made some real progress lately and I wanted to share with everyone.  In the past few weeks he has learned how to clap.  This may sound simple to some, but its a huge accomplishment.  He is a year a half and has just now realized he can clap his OWN hands.  Woo hoo!  He is also making excellent eye contact and responding when we call his name.  He seems to be engaging with other kids to play.  I am so excited about how far he has come lately.  I can hardly wait to hear him say his first word.  He has babbled dadada, but does not relate it to his daddy yet.  That will be such an awesome day when he does!  He doesn't wave bye bye but it seems like he is trying. He is still stimming by hand flapping or spinning around in circles.  He can't eat real food yet, although he puts peas in his mouth and then spits them out, which is the first step!  He isn't communicating much although he has begun to shake his head "no" when he doesn't want to eat, which happens to be every single time I try to feed him.  We are working with an occupational therapist to help with the feeding.  I have started some simple sign language since he can use his hands now, but he hasn't caught on yet.  Hopefully we can get him communicating soon.  He has learned how to distinguish a train from a cup.  I don't know if he actually knows it is a train though.  We teach him by holding the train and the cup out and asking where the train is and putting it closer to him so he chooses it and then clap and praise him.  He loves the praising so much that eventually we can keep the cup and train side by side and ask where the train is and he chooses it.  Its so strange to be teaching something so simple, but it seems to be working.  We are now moving on to the next item.  Its one item at a time and we have to change the distractor. Meaning I can't use the train and a ball and say where is the ball because then he will choose the train because that's what made him receive praise.  That tells me he doesn't quite understand that the train is a train.  But with autism like his (where language is the biggest problem) this is the only way we can teach him....Or at the least the most successful way so far.  He has to memorize.  I think that's how therapists teach behavior issues with kids with autism and aspergers.  They role play and let the kids learn and memorize how to respond correctly or appropriately.  We also work on simple 3 piece puzzles where the pieces fit inside a wooden puzzle.  We take the pieces out and just give him just one piece.  We show him how to put it in and clap and praise him and then let him try again with the same piece.  I would say he puts it in maybe 20% of the time, but we are working on that.   Anyways I just wanted to give an update.  I have started watching a newborn to help with the costs of therapy so that we can get our own house so please say a prayer that I can balance all the responsibilities of Jacob, homeschool and Jordan, Tyler and the new baby.   I will post more updates as we go.