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)