The Journey Continues…

Is there a Doctor in the House?

After the school’s initial diagnosis I knew I had to somehow find a pediatrician that could actually medically diagnosis and see him on a regular basis.  I sat at my computer, said a prayer and began to again google “developmental pediatricians in Atlanta”.  I came across an article about a Dr. Rubin that had an “autism clinic” that was run at a local hospital once a month!  I couldn’t believe my eyes.  I immediately called the “clinic” and asked if the information was correct.  The nurse on the end of the phone explained that they would take my insurance and that I should make an appointment right away for the next autism clinic…and that I did!  I must admit that they really didn’t prepare me for how long I would have to wait before we would be called in to see the Doctor.  Close your eyes and imagine being in a waiting room with about 8-10 little boys. All of them were loud, yelling, spinning in circles, or doing other “stimming” behaviors, crying, or throwing things.  It was horrible!  The more I sat there, the more I wanted to cry.  My husband waited in the room for about an hour and half before he couldn’t take it anymore and had to step out and take a break.  FINALLY after 2 hours we were called into the room to see Dr. Rubin.  He was very friendly and great with MJ.  As MJ continued to bounce around, and crawl under a hospital bed, he asked us a series of questions and looked at all of the information from the school.  He observed MJ and did a few “checks” on him.  He then looked at us and confirmed the autism diagnosis.  He said that he would write us a prescription for a medication that would help with his hyperactivity.  He also referred us to Children’s Healthcare of Atlanta to receive speech and occupational therapy.  Lastly, he referred us to a nutritionist who would speak with us about different foods that may affect his behavior.

“To Medicate Or Not To Medicate”
The idea of giving my son medication made me happy and sad.  Wow, maybe he will actually walk in the house now.  Maybe he will stop running into the street and I won’t have to worry about him getting hit by a car, or truck, or anything!  Maybe he will stop yelling at the top of his lungs every 30 minutes.  Maybe I can actually put the coffee table back in the living room.  Maybe I can actually let him play in the backyard without having to run after him.  Maybe he won’t throw his toys against every wall in the house over and over and over and over and over and over (sigh) and over and over and over again.  Maybe I can let baby Morgan be in the same room with her brother without worrying about her getting hurt…Wow, that would be the good life.  Then I thought to myself what about all of the side effects to the medication, maybe it would make him like a zombie…maybe… A few days later we decided to try it.  I listened to everything the nurse said and gave my son a dose of the medication.  Shortly thereafter I noticed that he wasn’t yelling and wasn’t throwing his toys…Hallelujah!!!! Then I noticed he wasn’t smiling. MJ is a very happy child.  He has always been a happy child.  When his smile disappeared it scared the hell out of me. He wasn’t my little boy anymore.  He barely responded to us and was soooooooooooooo different that we never gave him the medication again.
We went ahead and tried the therapy.  We still had to pay copays for every visit and decided that speech therapy was what we needed to focus on first.  There were times when we just couldn’t understand what he wanted, what he was saying, and what he needed.  That has got to be one of the worst things about autism.  I can’t tell you how many times I have cried about not being able to help him when he needed something.  We tried to schedule the appointments and that in itself is a task.  They have availability in the morning, but in the morning he is at school.  There were no appointments available on the weekend… How about in the evening?  Finally we were able to make appointments for the evening but at 30 minutes a week all, I could think was, “would this really help”…We decided to take what we could get.

“Supermom to the Rescue”
I decided to put on my supermom cape and do some of the things that I read about.  I immediately began to make labels to place on “everyday” objects around the house.  The desk had a label that said “desk”, the mirrors had labels that said “mirror”, the cabinet had a label that said “cabinet”.  Every time I had the chance, I would pick him up, show him the labels, and say the object out loud several times. This continued for about a year until I knew that he could identify and say the object.  His play area was filled with posters of the alphabet, colors, shapes, and anything else I could find that was educational.  I typed up our address and phone number and put it on the wall near his bed.  I practiced that every night before bed time.  I bought boxes of flashcards to use with him with everyday words and objects.  I practiced with him Every Single Day.  If he was watching a video I made sure it was an educational one.  I bought every Leapfrog video that was available at the time. When I first played the videos he was not attentive at all.  I continued playing them and soon he became interested and watched them at least twice a day. Educational Toys from family and friends continued to reinforce what he was being taught at home. I stayed in contact with his special needs teacher.  Ms. Sanders was his teacher for the first two years of school.  I am forever appreciative to her for everything she did for MJ.  She taught him how to use the computer when he was three, introduced him to starfall.com (which I know helped him learn to read), and really allowed him to become excited about school.   She was trained to teach kids with autism and so I listened to everything she said.  I tried whatever she told me to try.

   Communicate, Communicate, Communicate!

I also stayed in constant contact with his speech and occupational therapist that see him at school (MJ has always been in the public school system). I email them every 6-8 weeks to check on my son’s progress, and to find out what I can do at home to help him. I continue this practice till this day. One bit of advice I was given was to make him ask for what he wanted.  As moms know, we can often anticipate the needs of our children.  Well, that is exactly what I would do.  I wouldn’t wait for him to ask for juice, I would just give it to him! That was not helping MJ at all.  I began to wait and make him try and ask for what he wanted.  If you are reading this and have a special needs child in a public school I highly recommend that you communicate with their therapists. Never take for granted that they are truly seeing your children while in school. Yes, that is what they are supposed to do, but you must be sure to check up on everyone that comes in contact with your child. Ask for weekly reports if you have to. Emailing over the years has helped me to find out when MJ wasn’t getting the therapy that he needed (one year his therapist went on maternity leave and no one bothered to tell the parents). It allows the school personnel to know that someone actually cares about this child and will expect communications from them on a regular basis.

MJ’s Behavior

This is a tricky one. You have to really know your child and decipher the difference between the child’s stubbornness and the disability. When I hear from teachers that MJ cleans up every day and walks in a straight line, I know that this is something that he can also do at home if I work at it. I am very thankful that MJ was never a child that habitually bit, hit, or had angry tantrums. Whenever I knew he was being defiant, I had to take away computer time, try time out, turn off the TV, or prevent him from getting the treats he liked. Whatever you do, don’t give up. Research the behaviors that your child is displaying and try every strategy you can find until you find something that works. You have to address the negative behavior as soon as possible. You cannot ignore it and think that it will go away. Chances are it will not go away and will only get worse. This is very difficult to do but you have to be consistent with it in order to see a positive change. MJ tends to cry when he is frustrated, angry, or sad. The issue with his crying is that he doesn’t know how to stop. It takes him hours sometimes to recover from a crying episode. I have learned to talk to him through it, distract him with an activity, and let him know it will be okay. Sometimes it works but some days he goes to bed crying. I can’t stand it and it breaks my heart Every Single Time…

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9 thoughts on “The Journey Continues…

  1. M.J! I miss your boy so much. I can’t wait to hear about the progress you have made. Your resource list and information is impressive as always! You guys on FB? I’ve tried to find you to keep up with the family, but failed to find you. Whenever, feel free to text or email: I’d love to hear from you. Please tell him I said hi and I miss him.

    Liked by 1 person

    1. Ms Allen!!!!!!! OMG. We talk about you All Of the time. You were such a blessing to Mj and our family. I’ll always remember the barbecues you use to have for your class. You are an Angel. I will be in touch 🙂

      Liked by 1 person

  2. Hello Nicky I am truly overjoyed to see that you are still that strong woman of God that I knew. I speak overflowing blessing in you and your family’s life, you’re truly a remarkable person.

    Liked by 2 people

  3. Reblogged this on NickysdayWithAutism and commented:

    This is the last re-post of how this autism journey started for my family. Again, I want to thank everyone that follows this blog and reads my posts. It means the world to me. This is my one year blog anniversary. I look forward to many more.

    Like

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