When I was little, there was no more important person…or people than my bff’s. To a kid, your best friends make you feel special…important…included. My closest circle included Anisea, Hilari, Kelly and Crystal. Through the years we have all gone our separate ways, but I always maintained a close relationship with Crystal (Crissy), and she was my maid of honor in my wedding. From a distance the rest of us kept tabs on each other, but now, thanks to FB, we are now keeping up with each other’s families a bit better.
I hadn’t really given those three magic letters much thought until lately. To me, it was normal. Everyone has their circle…but that changed for me in 2007. It was that year I realized that my precious 4 year old son Eli would never enjoy having a group of tight knit friends…boys stomping on bugs…staying away from girls on the playground because they had cooties. Passing notes and getting caught by the teacher. I never thought I would ENVY the parents who got a call from the principal to find out that their son was in a fight on the playground over who played the best game of football…Those were all the normal “boy” things, and all of the things I expected would come along with having a boy when I delivered my precious Eli on October 23, 2003.
But in 2007, just after Chase was born and Eli received the diagnosis of Autism, all of those normal things I had anticipated…some of which I dreaded…all of those things were ripped from me. Perhaps he would never even marry…never even want a friend, much less a girlfriend. My heart felt like it had been put through a shredder. I was handed a sheet filled with lists of doctors, therapists, treatments, options, off the wall methods as well as the more down to earth “normal” options.
Being given the news that your child has such a severe disability with no real mentor was devastating. All I had as my new guide and MY new bff, was this sheet of paper full of words, therapies, ideas and suggestions which 99% of I have never heard of before in my life.
I. WAS. ALONE.
I understand why parents who even THINK there is an issue with their child chose denial. Boy is that much easier on the parent, for sure. You can go on with your life. Pretend with your girlfriends that your child is your sweet normal little child, just like theirs. You won’t be whispered about. You won’t be weird. You won’t be different, or considered different.
YOU CAN STAY NORMAL.
Back to Eli and BFF’s.
In the beginning, telling people was out of the question. Norman urged me to open up, to tell my family, but I wasn’t ready. I couldn’t do it yet. I couldn’t shatter them with the news that their very first grandbaby wasn’t perfect in every way. During that time, my friend Reina was my absolute rock. She encouraged me when I was in despair. She always found time for me despite her own struggles. She was the vessel through which God comforted me, encouraged me….loved me. And for that, although I am lousy at keeping in touch even though we live a few miles apart, she will forever have a place carved in my heart…in the shape of a heart, because she kept me going at times when I didn’t feel I could. Or even want to.
We decided to fight for Eli. Despite the statistics, despite people telling us to expect the worst. Despite the looks and the grim news from the doctors.
We first tried therapy without medication. I was VERY ANTI-MEDICATION. I had, for my adult life, believed that parents gave their children medication to calm them down because they were simply lazy parents. They didn’t want to play with their children after a long day at work, so easier to calm them with a pill than exhaust themselves further. I was against medication.
Play therapy was started to address the aggression. There is no way to couch this in a pleasant way, so I will just say it. I love my child to no end, but Eli was ruthless. He was an angry, mean, physically violent child, and we had to get him under control. By this point we had enrolled him into a preschool, but he had been asked to leave because of how mean he had been to the other children. He had no patience. One example of his time at the preschool, was when he wanted to swing on the swings. There were none available because some girls were swinging, so he picked up handfuls of rocks and pelted them with the rocks until they fell off the swings. Then he stepped over their poor crying bodies and he swung until he was grabbed and taken to the principal’s office. Every day it was something like this…throwing children from the top of the slides off of them because they would not slide fast enough or get out of his way. It was devastating.
I felt deserted by God. I felt as if I was abandoned and as if I were punished for something, and there was no end in sight.
We kept up with the play therapy, and added in talk therapy with the same therapist, Ray. All these years later I still remember his name and the way he would look at me…he would take his glasses off and sigh and the heaviness in the room nearly overtook me every time I we were there.
We kept at it, but two times a week wasn’t enough, so we moved it up to 3…but no shock. That made no impression on him. No difference in his behavior. So with trepidation and much anxiety in his voice, poor Ray told me that if I truly wanted to help Eli, we were left with no choice but to try medication.
To be clear on all of his issues up to this point, he was mean (you already get that I figure), but he had adhd. He was always moving, running, loud, knew no such thing as an indoor voice. He was unstoppable. And it took me a long time…and there are times that even now, I have to remind myself, and truly pray that God comfort me and remind me that it isn’t my fault. It’s not bad parenting. And upon occasion at the supermarket when I have heard whispers behind my back about that “woman who needs to get her child under control”, I have lost my ability to control my tongue and told them that they have no right to be busybodies, and that my child is autistic and adhd, has a slew of doctors, and perhaps they can take up their issues with my child’s behavior with any one of his therapists. That shuts them up rather rapidly, although as a Christian woman, I will admit that is the not the best way to handle the situation.
This has become so terribly long and verbose, so I will try to do my best to wind this up. We did start medication upon Ray’s recommendation to a child Psychiatrist, and the first drug did nothing. Another was tried, then we tried a combination, then changed out medications, tried different combinations, and finally we found one that worked. For a little while.
The problem with children needing these types of medications is that as they grow, their bodies and metabolism change. Some medications which have worked beautifully at one point simply stop working when a child has a growth spurt. Since Eli is very aggressive when his medications are not working well, it isn’t safe for Chase to be in the same house. Med changes can take months to find the right combination, which is why he has to visit places such as Laurel Ridge and Meridell. Under the constant, 24 hour supervision in those places, they are able to change medications quickly as needed, and he is able to do so in a safe environment, and we are able to keep Chase safe as well.
A curse to most, but a blessing to Eli is the fact that he does not attach to us…to family…as most children do. He loves us dearly, but separation does not upset him. It makes his visits to these long term facilities much easier…if anything can make something so difficult, any easier.
Since 2007, Eli has seen on a regular basis (most meaning every single week) play therapists, regular therapists, occupational therapists, psychiatrists, social skills/communication groups, and his child psychiatrist once a month for medication refills and behavioral check. It is exhausting…but the point for this long post is to say…
IT HAS BEEN WORTH IT!!!!
Eli has a circle of friends, who he calls his “bff’s”. And as much as I know that is a girly thing to say, it is a beautiful thing to hear him say. My sweet son, who used to want nothing to do with another child on the planet, has two bff’s. And today, he received a play date invitation from one of them. My heart sings for this moment in time that all of the pain, and questioning…even if only for this day…it has been worth it. I know there will be more Meridell and Laurel Ridge visits as he grows and his body needs his medications adjusted. But he WANTS and LOVES his friends. He loves to play with others and enjoys their company. It is so wonderful to have these “normal” moments where I can see him…unafraid of swimming in the deep end of the pool…smiling when he talks about what he played on the playground with his friends… There is nothing that tops that when you were once told that your child will most likely never have friends.
WE PROVED THEM WRONG.
The most important thing I would say to any parent who has a child newly diagnosed is to let go of the negativity and fight for all that is positive. Fight for that slim percentage they give you. Fight for all of the things they tell you “may” never happen. We are living proof that it can. FIGHT. FIGHT LIKE HELL and don’t let anyone knock you down. God entrusted a precious PERFECT life to you…precious and perfect in God’s eyes because that is how God made him/her. Don’t lose hope.
During this process I have become an advocate and supporter for parents, and I help in any way I can. Whether it be a need for prayer, advice for a doctor (trust me, I have a network as big as the U.S., and my contacts can help locate the best doctors for you in your area). And ESPECIALLY if you are a military family. The military faces special challenges, and sometimes it takes filing IG complaints, getting Congress involved, and calling on high level individuals to get help. I have done it all. I have broken rules…I was nearly arrested at Barksdale Air Force Base. I don’t back down, and I don’t regret a minute of anything, except for the times I doubted God’s love for me. I am human…there are times I still fight my painful moments. But we all have our battles.
I see parents who are in denial, and it takes all the strength I have not to slap them and tell them that they may be making themselves feel better, but they are hurting their child. The best time a child has to receive help and truly benefit is up until the age of 7. Once a child is between the ages of 7 and 10, the amount of help that can be given and the improvement in social skills is so much lower. The earlier the intervention the better. Please…I beg of you to not deny your child help because you fear pain and rejection from friends and family. Give your child all that you can possibly give to him, and that is the best start in life. Whatever you do, do not selfishly deprive your child what he/she needs to have a good life because you are afraid of what people might think of you. Thinking like that, is the thinking of a coward.
I always respond to anyone who contacts me for help, regardless where you live. The most important thing we can do for each other is love and support one another. Contact me. Leave me a message with your email, and I will get in contact you. I am also available if you would rather talk over the phone. It is a hard journey, but you have to know you are not alone. As long as I can help, I will never let you walk this journey alone. We will all make it!!
Prayers to all…
Eli’s Proud Momma…Stace