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