It is Global Autism Awareness Day -

The CDC released that the current Autism rates are now 1 in 88 children (1 in 54 boys). I really hope and pray that people wake up and see just how serious this is. Vaccines DO play a role as well as all of the other junk our children are being routinely exposed to. Be informed!



Just an added article I recommend reading. A sweet friend shared this with me today. Why Vaccines Will Be Obsolete in Three Generations

Struggling Yet Still Encouraged

What a whirl wind the past few weeks have been.  We got Sofia an appointment with Dr. Cave for next month, and after filling out all of the medical history for our family (both sides) I am a bit more encouraged.  There are no known cases of autism on my side of the family (although there are other behavioral and mental disorders); there are several diagnosed cases on Malachi’s side.  I don’t feel as isolated and alone, nor do I feel stupid for actually thinking that Sofia’s behavior just isn’t normal.  I am sure there are some skeptics in regards to our concerns for Sofia, but I have to keep reminding myself that no one else lives with my child to see the everyday goings on in our home.  Much of the issues that I have struggled with in Sofia for the past few years really shouldn’t come as a shock to close friends and family, because I know I have mentioned them a thousand times.  It is just now we are accepting that things aren’t right, and there may actually be a problem that is in no way related to what we initially thought was just “a battle of wills”. 

Upon researching, talking to other parents of autistic children, and getting in touch with different organizations, what we are dealing with is highly common with children who are autistic.  We realize that Sofia will most likely be considered “high functioning” because she is talkative (sometimes obsessively talkative) and she loves people and interacting (although she is a bit awkward).  By “awkward” I don’t mean “geeky” or “nerdy”, but she has no concept of personal space nor can she recognize when someone doesn’t want to talk to her.  And as I mentioned before Sofia would have no clue if she was being bullied.  She tends to think everyone is her “best friend”, but if she were to clearly understand that simply isn’t true her heart would literally be broken. 

Over the past couple of weeks I’ve done so much reading that I think my eye balls might fall out of my head.  One thing that I always thought was odd is that Sofia is an angel in public, rarely causing any trouble; however at home it is a totally different story.  From what I have read this is typical for autistic children because their comfort zone is at home.  They feel safe to display and let out all of the anxieties that may have built up when out and about.  This is very typical of Sofia.  Another thing that has become clearer is that Sofia thrives on a schedule.  Now, I know, most children need a schedule and thrive on it as well, however, when we deviate from a schedule that Sofia has become used to then it completely changes her behavior.  I have told many people this before, but at times Malachi and I have described Sofia as “neurotic”.  We don’t mean it in a mean way, but her behavior at times (if anyone saw it other than us) can cause one to think the child has lost her mind. 

 

            Today for instance; after Malachi left for work, Sofia started to act as though she was a bit agitated about something.  Because I was trying to get Ellie back down to sleep, I couldn’t immediately address what was wrong, so Sofia’s anxiety got worse and then from there got out of control.  What do I mean by “out of control”?  Well, naptime came around and Charlotte got in bed like usual, and I told Sofia to get in her bed.  Sofia protested a bit, but I reminded her that our bodies need to rest, and she appeared to comply.  I closed the door to their room and went back to trying to get Ellie to sleep.  Sofia opens the door and says “I’m not tired, I’m not taking a nap”, to which I responded with “yes you will”.  This is when the whining started and the physical struggle of putting her in bed began.  I walked out and closed the door only to be met with the sound of Sofia screaming her head off.  When I walked back in the room she explained to me that she hates her bed and hates her room and that she will not sleep in there.  So, instead of fighting I told her to get up and get in the living room.  Immediately she began to yell and scream that she “was” tired and that she did want to take a nap. I am sure many of you can probably feel my blood pressure increasing at this point. I couldn’t do this with her today, so I physically picked her up and put her on the couch so that Charlotte could sleep.  I then put Ellie in my room so that she could sleep because Sofia was literally yelling, kicking, screaming and hitting.  I then proceeded to inform Malachi about what was going on so that he could 1) be praying for me and 2) give me some ideas of how to handle her.  We both agreed ignoring her would probably be the safest option as my nerves were quickly waning.  I sat quietly listening to her demands, often incoherent, and waited out the storm.  For an entire hour she sat on the couch yelling, screaming, crying, hitting the couch, kicking the couch and getting off to jump up and down.  She was out of control and any time I tried to talk to her to see what the matter was; I was met with “I hate you!” “Leave me alone” “You’re mean”.  This all from my sweet almost 5 year old Sofia, no one would believe me that this is what I have been dealing with for about 3 years, because the mere mention of it would even lead me to believe that I am a failure. 

            Malachi recommended I turn a movie on for her to watch, hoping that would settle her down.  Once I turned the TV on all I heard was “I hate TV, turn it off now!”  All she did was yell at me and continue to be more combative.  I ignored her and left the TV on for about 15 minutes, but after hearing her cry and yell I got up and turned it off, only to hear her completely lose her mind yelling at me that she wanted to watch the show and that she loved that show…   She literally had NO idea what she wanted or in reality what was wrong.  This is when my heart breaks for my child. To look into her eyes and see that she has no control, and that she has no idea why she feels the way she does leaves me feeling helpless.  She doesn’t want to be touched during these times (this has been common since her first temper tantrum when she was little), and nothing anyone does will calm her down. I am sure many well meaning people would suggest a good spanking or time out, however we’ve tried all those things for the past 3 years and they don’t work.  It only makes it worse.  You could rip the child’s legs off and beat her with them and she wouldn’t feel one bit of it or be fazed by it.  It is the craziest thing, but this has been my life for a few years now, and for fear of being judged on my parenting abilities, I have not shared this with too many people.  But, things have changed now, and because we know now this has nothing to do with a simple behavior problem, or a testing of our authority, I am sharing so that 1) I don’t feel so crazy and 2) maybe, just maybe, this will help to educate people on autism and other neurological disorders while possibly giving hope to other families who are going through similar things but aren’t being taken seriously by friends and family.

 

            We’re praying to get some answers from Dr. Cave after she runs some lab work.  It may give us a better understanding of what may be the cause.  We have all been gluten free and dairy free for about 5 weeks now, and while at first we saw some improvement, it is possible that we are at the time of being gluten free that Sofia’s body is craving it, which could be making the outbursts and meltdowns worse.  I’ve been told it can take up to 6 weeks or so for gluten to completely be out of the body, so we’ll see if she begins to improve in a couple weeks.  We are also going to try some melatonin for Sofia because she has such a difficult time settling down for bed.  I’ve heard and read that it has worked miracles for autistic children and if I wasn’t nursing an infant every 3 hours at night, I might just take it myself!  ;)

            Please keep our family in prayer.  We know that we’ve got a long way to go, but we’re praying that through it all we continue to glorify the Lord.  We strive to be obedient to Him in the care and nurturing of our children.  We’re encouraged to know that we’re not alone in this battle.  Knowing more about our medical history has been enlightening and it may help to explain many things.  We are researching and talking to people who battle with this every day, and that has been so helpful to us.  We are so appreciative of the people who have been willing to share their stories with us and encourage us as well.  It is truly humbling to hear other’s open up and be real about the things they struggle with, but they still have a great attitude and love their children immensely. 

Serving God and My Family,

Crystal <>< (SAHM)

Learning More and Being More Encouraged

The past week has been a whirlwind, but also very encouraging.  I’ve had the pleasure of connecting with other moms who have autistic children, and even made contact with a physician that is willing to evaluate Sofia.  The physician has a practice like Dr. Sherri Tenpenny’s and she wrote the book “What Your Doctor May NOT Tell You About Vaccines”.  She is in our area and after sending her an email briefly explaining some of the things we are struggling with in Sofia she wants us to schedule an appointment.  She said that she would like to start by mapping out Sofia’s neurochemistry which will better indicate what Sofia’s needs are.  We are more comfortable with this route because this physician is not a psychiatrist or psychologist; she is a family practice doctor who has been treating children with autism since 1996.  I also know that she will use non-toxic methods to treat Sofia (if necessary), which is comforting to Malachi and me.  

            I had the chance to talk to my mother about Sofia, and was actually surprised that she recognized many of the behaviors I mentioned in Sofia years ago.  We talked through much of what Sofia has been doing, and it was nice to have my mother’s support and encouragement in this area.  Malachi also spoke with his mother about it, and she was able to remember things too about certain things Sofia has been doing.  Now that this is on the forefront of our minds, Malachi and I began to remember other things that clue us in on what may be wrong with Sofia.  In 2008, soon before 2^nd birthday Sofia had a few vaccines (I can’t remember the specific ones) but shortly after (not exactly sure of the time frame) she had a seizure.  Her pediatrician at the time sent her for an EEG the very next day and it came up inconclusive and we were told that Sofia was fine.  We never gave any thought to it since just the other night.  I was reading about seizures being a side effect of vaccinations and then rummaged through some pictures and found the one we took of Sofia’s hair after she had the EEG done.  We took it because her hair looked all funny from the gel they put in it to connect the electrodes to her scalp.  Sadly, now, we don’t think the picture is all that funny anymore.  

            It is like we are wearing a new set of glasses which is allowing us to see more clearly.  Although we are seeing more clearly, it has caused even more speculation as to what has been causing some of these developmental problems in Sofia.  It is also confirming much of our suspicions which are actually helping us to know better how to communicate with Sofia.  A sweet friend of mine put me in touch with a lady in the UK who is currently trying to get her book published that offers much insight into how to communicate with Sofia effectively.  She writes the book as a helpful guide into understanding the autistic mind and how to “Shepherd the Autistic Heart”.  I have read Ted Tripp’s book on “Shepherding a Child’s Heart”, and we’ve used it as a guide in disciplining our children, however, in the case of Sofia it is absolutely ineffective.  Now we understand why!  So to have another mother who has walked this path before (and is still walking it) sit down, do the research and write a book that helps to understand this new world we are venturing into is SO HELPFUL!  It has minimized much of our frustration and has aided us in communicating with Sofia more effectively.  Her brain obviously works differently and thus the approach we were taking simply wasn’t rendering the results because she could not understand what we were saying or doing.  

            We are taking more time to listen to Sofia and make sure that she understands when we give her a command.  What we are finding is that she did not understand what we were saying to her.  So, now instead of saying “Sofia, don’t run in the house”, we are saying “Sofia, walk”.  It seems keeping the commands short and simple are working best.  This is obviously basic stuff, but we assumed that because Sofia is soon to be 5 years old, that she was fully capable of understanding “don’t run in the house”.  However, in an autistic child, “don’t run in the house” is a long negative command where they may only hear the part “run in the house”, which is why rewording the same instruction to “walk” is better understood.  (Note: this isn’t a problem for our almost 3 year old…which lends more credence to our concerns for Sofia).  

            We are so appreciative of the love, support and encouragement we have gotten over the past week since sharing our struggles.  We are confident that the physician we’re taking her to see will be able to give us more answers and guide us in how to help Sofia.  In all this we pray that we use every opportunity to glorify the Lord and we are so grateful for His grace throughout all of this. Soli Deo Gloria!

Serving God and My Family,

Crystal <>< (SAHM)

Prayer Request for Our Family

Sofia Michelle on her 4th Birthday last year

My Sofia.  What can I say; she is just the sweetest girl in the world.  From the time she wakes up to the time she goes to bed she is on “full speed ahead” mode.  She is our first born and has been such a delightful blessing to Malachi and me.  

We will celebrate Sofia’s 5^th birthday next month, and we are just so amazed at how quickly time goes by when we’re not paying attention.  It still feels like yesterday we were bringing her home from the hospital.  Sadly though, from the very beginning Sofia and I had a rough start of it.  I suffered from postpartum depression shortly after her arrival and I didn’t begin to feel “normal” until she was about a year old.  Within Sofia’s first year she ended up with an angioma (we called it her “angel’s kiss) on her nose that eventually required surgery to remove.  That surgery took place shortly after her first birthday and was one of the hardest things Malachi and I had to deal with as parents. But she has an amazing plastic surgeon who did an amazing job on her nose and now you can’t tell anything was ever there.  

Over the past 3 years or so, things just haven’t been “right”.  I’m not sure how to properly explain that in written word, but I will give it a try.  Right around the time Sofia turned three (maybe sometime before that) she started having horrible problems with sleeping, more specifically going to sleep.  We tried the “cry it out” method, to NO avail, and it only left Malachi and me feeling like failures.  We tried letting her sleep in our room; which neither of us minded, but then we got much “advice” on how she needed to be in her own bed…blah blah…so we made that transition which was painful for us all.  The only way she would lay down for a nap was if I slept with her, which wasn’t necessarily bad because I too needed to rest.  So it benefited us both.  However, if there was a day I couldn’t lay down with her, she would have a full on meltdown.  (This is happening even to this day and she is going to be 5 next month)

The other things that I noticed seemed odd, but just figured that was just Sofia’s personality shining through, are that she doesn’t know when she is being picked on or if a child is being mean to her.  Malachi and I were sitting here the other night and he made the observation that if a child were to push Sofia down, Sofia would laugh not knowing she had just been bullied.  The person who pushed her down would be her “best friend”.  She is a bit socially awkward and doesn’t seem to understand personal space.  She gets stuck on a topic (whatever her little mind is fixated on) and can’t seem to focus on anything else.  She repeats herself as though she doesn’t recognize that she has already said something.  She has emotional meltdowns because of very insignificant things.  She equates an “angry face” with “you don’t love me”, but a “happy face” means “you love me”.  She doesn’t seem to feel pain, or at least be fazed by pain when she receives a spanking.  In fact, sometimes she laughs thinking we’re playing a game with her, and will even request who she’d like to spank her.  Very odd.

Over the past three years I would ask Malachi “is something wrong with her?” and his response was always “no, she’s just being Sofia”.  Over the past few months though, we are both coming to realize something is definitely not right.  The worst days were a few days ago around naptime.  Sofia had complete meltdowns and couldn’t stop repeating certain things, and even yelled at Malachi “daddy, you are not protecting me!” This pretty much sent my husband to his knees crying.  We have both cried and yelled and gotten very frustrated and angry with Sofia and ourselves for not knowing what to do.  

We are no longer in denial that something is not right with our sweet Sofia.  Our suspicion is that she has a high functioning form of Asperger’s Syndrome.  She fits just about all the criteria, and the behaviors have been going on since she was about 3 years old; even though we brushed it off as simply her personality.  

A year ago she had a horrible reaction to red dye in foods and that forced us to think differently about what we eat, which in turn led us to switch to an all organic/all natural diet.  Recently we stopped all dairy and limited sugar in take, mostly because I was noticing it was bothering Ellie’s tummy after nursing.  Our philosophy is if one has to change diet then we all have to.  When Ellie’s fussiness wasn’t really getting better it was suggested to cut out gluten, and so we did.  We are on day 4 without gluten and Ellie is no longer fussy after nursing, and it has greatly improved Sofia’s behavior.  Coincidently gluten is one of the things highly recommended to be cut out of a child’s diet that has autism.  

Given my husband’s knowledge and work in the field of psychiatry and psychology and my own personal experience with the field, we will not be having Sofia evaluated.  I don’t need a head doctor to tell me something is wrong, Malachi and I just know it.  I am thankful that my husband has knowledge and experience in this field and knows how to handle this.  

What we need more now than ever are prayers for Sofia and for us as we go down this journey of having a child who more than likely has Asperger’s.  We are fortunate to have close friends who have children with autism and they have been a great support lately.  Sofia is still a delightful child and if you were to be exposed to her for just a couple of hours, you may not even know anything is wrong.  However, we are with her everyday all day and we just “know”.  We are not going to make any more excuses and our heads are out of the sand.  

We will be seeking to learn ways to help Sofia learn appropriate social behaviors, while still shepherding her heart to the Lord.  This means a lot of hard work and a whole bunch of patience on our part as we cannot teach her or discipline her like other children can be.  Please keep our family in prayer, and know that we are not sad or worried about this situation.  We are so thankful and blessed the Lord chose Malachi and I to be Sofia’s parents.  We are confident that He did so not only to help Sofia but to teach Malachi and me more about self-sacrifice.  

Soli Deo Gloria!

Serving God and My Family,

Crystal <>< (SAHM)