Don’t Include Us In Inclusion!

Inclusion is when they “include” your special needs child into a regular classroom setting. Though there are some benefits to this, for us it’s not the right choice. While in Atlanta, one of MJ’s teachers recommended that MJ be included in a “regular” reading class. MJ was able to read but people, he was not able to comprehend what he read. Nevertheless, with the teacher’s suggestion we thought about it and decided to give it a try. Hated it! The teacher of the reading class CLEARLY had no clue what autism was. She would send home notes regarding the noises MJ would make and his inability to stay focused and stay seated. NEWS FLASH LADY, HE HAS AUTISM!  I stayed “saved” and remained a Christian until she sent home a paper with a grade of  “F” on it. At that point I turned into “Nicky from the 305” and had to go to the school and “regulate”…The teacher was not equipped to work with MJ. Even with an assistant in the room, MJ still made noises, and just could not stay on task and focus like the other kids. We have never done that again. The point is, INCLUSION WAS NOT THE RIGHT CHOICE FOR OUR SON! I DIDN’T CARE WHAT THEY TRIED TO TELL ME AT THE SCHOOL. We KNOW that MJ consistently needs a small classroom setting with more than one teacher in the room. He thrives in that type of environment. As of right now, MJ attends an autism classroom at our local elementary school. It has been amazing. Maybe things will change in the future and he will be able participate in a regular classroom, but right now I have to advocate for my child and do what is best for him.

Side note: MJ attends a “regular” art class and P.E. class with the rest of his peers. A teacher is with them at all times.

My Husband…Oh, My Husband!

Through the next few years it became increasingly  more difficult for my husband to deal with MJ and his autism diagnosis. NO PEOPLE HE WASN’T IN DENIAL (people love to say this)! He was very much aware of what we were dealing with and he didn’t like it one bit. He came home one day and I could tell something was wrong by the look on his face. I asked “What’s wrong…what happened,” He said, “Today when I dropped MJ off to daycare, three little girls called out to MJ and instead of him going toward them to say ‘hello,’ he ran away from them!” In all seriousness, he speaks his truth about the situation and although it is hard for me to hear at times, I appreciate his honesty. You know they say men do not talk much and they hold in their feelings?!?! Well, NOT THIS GUY. I would love for him to join a support group or see a therapist but he refuses. Maybe one day through prayer he will change his mind. I can honestly say that on some days it is more difficult dealing with my husband’s feelings about this, then it is to deal with MJ!!! I researched and found out that the divorce rates were high for the parents of special needs children. I informed my husband about this and we both looked at each other as if to say “we know why”. When MJ was younger and the constant screaming, banging and throwing toys, and not being able to understand what MJ was saying was happening, there were days that he just had to leave the house for a few. IT WAS HARD TO ENDURE PEOPLE! I never took offense to it…I would rather him leave and re-group, then to do or say something hurtful. Thankfully for us, we are friends. We communicate a lot with each other even when one person is saying something the other doesn’t agree with. We may have to take a break (I put the Vaseline back in the cabinet and put my earrings back on lol) and then continue our conversation, but we make sure that there is some kind of resolve. I remember one conversation where I asked him about “teamwork”. I took the lead with most of the “things” regarding MJ. I knew how this entire situation made him feel and, can I be honest? I knew I would do a better job at it! So, what I could do on my own, I did, while at the same time keeping my husband informed. Teamwork, my husband’s sense of humor, and God is how we have stayed together over the years…Oh and one more thing…our annual “stay married” vacation :-)…

Been There…Done That!

Gluten Free Didn’t Work For Me!

Remember a few years back when people just began to talk about gluten free foods? Well at that time we decided to give it a try. If we could change Mj’s diet and see great results then we would be the most gluten “free-est” family on the planet! So, I went to about 3 grocery stores to buy gluten free foods. It was so difficult to find food items back then but I bought loads of things and we changed his diet completely for 3 months. Unfortunately, we found that there were no changes in MJ’s behavior. Some may say that we didn’t try long enough but we did the best we could at the time. Things were limited and EXPENSIVE! Do you have any idea how annoying it is to see ALL of the gluten free varieties available NOW in our local grocery store?! Huh…maybe we will try it again…

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…

The Journey Begins

The next few days were honestly a blur.  I remember crying off and on, feeling sorry for myself, and wondering WHY this happened to me, my son, and my family.  “God has to heal him from this”.  My husband was trying to process this whole thing as much as I was.  I remember telling my family and trying to stay as upbeat and positive as I possibly could. “OK, that’s it, enough crying”…I need to do what I can to help this little boy.  I became a “google junkie”.  Some of the information was great and some was scary.  I chose to focus on the positive articles that I could find.  I went to the bookstore and purchased Jenny McCarthy’s book (Louder Than Words).  It was so refreshing to read a book from someone who was experiencing what I was experiencing.  In the last chapter of the book she makes a profound statement: “For family or friends who are reading this, who don’t have an autistic child…Let me tell you how you can help.  The best thing you can ever give is babysitting time!”  THAT WAS SO UNBELIEVABLY TRUE!  As a couple, we needed a break from our reality.  It consumed every part of our lives.  I didn’t want to be a statistic and divorce based on dealing with this disability (more on this later).  In the midst of my research I came across other celebrities who also had a son diagnosed with autism.  Tisha Campbell-Martin and Holly Robinson-Peete were also parents of kids with autism.  I soon came to realize that their reality wasn’t necessarily my reality.  THEY HAD MONEY!  Clearly their sons would have a better chance of getting better than mine!  They had the opportunity and resources that I didn’t.  I read article after article saying that ABA (applied behavior analysis) was the therapy that autistic children needed.  Well, it came at a price tag of $40,000 a year! Really?! How the heck would I be able to do that…I COULDN’T!

The elementary school began the process of testing MJ.  I had to fill out several pages of questionnaires.  They completed hours of observations and testing on MJ.  The final result stated that “autism was highly likely”.  Based on the ignorance of our previous pediatrician, I switched doctors.  When I went to an appointment I gave them all of the paperwork from the school regarding their findings.  They recommended that I see a developmental pediatrician.  They referred a few names to me.  I could not believe that they did not accept HMO insurance!  These doctors were supposed to be the ones that specialized in autism and there was NO WAY of  MJ being able to see one. It was unbelievably depressing and frustrating.  I heard about a place called “The Marcus Institute” in Atlanta.  I called to see about MJ possibly going there.  I called and was put on a waiting list of over 6 months!!!!!!!!!!!!!!!!!!!!!!  “Are they freaking crazy! They want me to wait 6 months before I get help for my son!”  I honestly don’t know what people do who don’t have a belief in God.  It was at this point that I realized that I needed divine intervention.  “Please God help me to do what I can at home to help MJ.”  As the days, weeks, and months went by my husband became more and more angry at the fact that the son he always wanted had autism.  The dream, desire, and need he had to cultivate a relationship with his son, that he didn’t have with his own father, was quickly fading away…

The Beginning…

About 6 months after getting married, my husband and I decided to have a baby.  Thankfully, it didn’t take long and we were soon pregnant.  Of course I purchased every baby book known to mankind and read and read and read, and then read some more!  The moment in my pregnancy that stands out to me is the day we found out the sex of our baby.  We found out we were having a boy! We were so excited but my husband was completely bonkers with this news!  He longed and hoped for a boy (he already had 2 daughters).  He called everyone and said “we have a penis, we have a penis”!  The next few months were plagued with more reading, fear of childbirth, heartburn, fear of childbirth, sleepless nights, fear of childbirth, decorating the baby’s room, and oh yeah did I say fear of childbirth! I secretly was so happy to be the first person to give my husband the Son he Always Wanted.

On May 11th our son MJ was born.  It was a normal birth and delivery.  I thought the nurses had magic because they were able to make him stop crying when they swaddled him.  We took our son home and the journey began.  No one prepared me for how difficult it was to take care of a baby.  I swear I didn’t remember my name or remember to take baths everyday for the first 2 weeks lol!  WHY didn’t anyone tell me about the fact that I actually would be getting NO SLEEP! Breastfeeding for me was AWFUL!!! Yes, Yes, I know what “they” say…You are supposed to bond with your baby blah, blah, blah. Well, for me there was no bonding going on.  There was pain and crying…Finally I called a friend and she told me to buy the “nipple cream”.  The cream really helped to take the edge off and allow me to breastfeed for a few more weeks.  Looking back it was probably a case of him not latching on properly but I was doing everything I knew to do from all of the darn books and magazines I had read!

Fast Forward a few months and I was finally getting the hang of this “baby thing”!  There was a great book that I considered my second Bible.  It was from the American Academy of Pediatrics.  It was called “Caring For Your Baby and Young Child From Birth to age Five”.  I used this book as a resource on a weekly basis (and I highly recommend it).  According to this book, Mj met all of his milestones.  Mj smiled, crawled, babbled, walked, and grasped objects when he was supposed to.  I was a happy mommy to see how my son was progressing.  During February of 2005 my mother passed and my husband and I decided to relocate to Atlanta, Georgia.  While there I found a pediatrician in Atlanta just in time for his 14 month check up.  At this time MJ was saying words like ball, juice, cup, and video. At this appointment he received a series of vaccines including the MMR vaccine.  I must say that we began to notice a change in our son after this appointment.  MJ was a very hyper child.  He never walked.  He always ran.  There were times that he would pull away from my hand and run out into the middle of the street.  We never considered this a red flag because he was no more hyper than some of the other kids that we knew.  During this time we began to notice a difference between MJ and his peers.  Other kids in the daycare would talk to me when I came to pick him up.  MJ would never talk.  I decided to do some research and found that boys tend to progress slower than girls.  I figured that MJ was just progressing the way some boys do.  I never gave it another thought.  At 18 months we took him back to the pediatrician for his check up.  During his appointment MJ bounced around like a ball, spun around in circles, and did the infamous “flapping” of his arms.  I informed the Doctor that I was worried about his speech.  “He is not speaking in two words sentences yet” I said to the Doctor.  She said “he is not two years old yet so let’s wait”.  She never asked any questions about the behavior he was displaying in the room.  We decided to listen to the Doctor and wait.

Baby Surprise!

During this time we found out that we were having a baby girl! Morgan was on her way (she was born February of 2007)!  I THANK GOD THAT MORGAN IS HERE. If I found out about my son’s autism diagnosis before we were pregnant with her, she would have never been born.  The FEAR of having another child with autism would have prevented me from having another baby.

“Houston We Have A Problem”

During 2006 we continued to notice our son’s speech delay. I did some research and found information on recurring ear infections and how that could affect speech in children.  MJ suffered from numerous ear infections.  He had one almost every time he had a cold.  After speaking with his doctor and receiving a referral to an ENT I made the appointment.  They tried giving him a hearing test but he was unable to take it.  He would not respond to any of the sounds he was hearing.  The ENT recommended surgery to place the “tubes” in his ears.  We scheduled MJ for the surgery.  “Finally MJ’s speech will get better”.  Well…it didn’t.   I continued to research information on speech delays and came across autism.  I completely ignored the information because MJ had none of the “signs” of autism.  By the time he was two years old MJ knew all of the alphabet, numbers from 1-20, colors, and shapes.  He also used to watch the “Baby Einstein” videos that would help to reinforce all of the skills I was teaching him.  I also used flash cards daily.  At first it appeared that he was ignoring me.  I didn’t give up.  I continued to hold up the flash cards and say what it showed.  Finally MJ began to pay attention to the cards and started to recite what he saw on the flash card.

One day a speech therapist came to his daycare to work with another child.  While there the therapist noticed that MJ was playing in the corner by himself.  She spoke to his teacher and the owner of the daycare and suggested to them that the “parents should have him tested”.  After we received this information I called “Babies Can’t Wait” to have him evaluated.  After filling out lots of paperwork, having home visits, and school visits, they diagnosed him with SDD (severely developmentally delayed).  Clearly this lady didn’t know what she was talking about! Doesn’t she know that my son knows his alphabet, shapes, colors, and some words!  Based on the diagnosis MJ began to receive speech therapy while at daycare.  Unfortunately it only lasted for a few weeks because he was about to turn three.  Three years old was the deadline for services through Babies Can’t Wait.

“The Hard Truth”

When MJ turned three someone from our school system came to our home to evaluate him.  Based on the evaluation it was recommended that MJ be placed in a special needs Pre-K classroom.  We were excited to hear about this because we had no knowledge of anything like this being available.  We were happy that he would be placed with a qualified teacher who knew he had a delay and would help him to catch up.  In August 2007 MJ began the special needs Pre-K.  His teacher was Ms. Sanders.  She was young, energetic, and had the perfect balance of love and discipline.  We knew that MJ would be in good hands.

A few months after school began we were called in to have a conference with Ms. Sanders and his speech therapist.  During the conference we were told the “signs of autism”.  Then they told us that “MJ appears to have some of these signs”.  They suggested that we have the school test him for autism.  It was very difficult to hear this information.    My husband became very upset when he heard this and in particular, upset with the speech therapist because of how she delivered this information. .  She was abrupt and said it in a “matter of fact” way.  After the conference I had to go back to work.  I pulled into a parking spot and cried for 20 minutes.  WHAT IN THE WORLD AM I GOING TO DO NOW??? HOW AM I GOING TO STAND IN FRONT OF A CLASSROOM AND TEACH TODAY? I said the best prayer that I could at the time and went in the school.  I honestly don’t know how I made it through the day.  And so our Autism journey began…

Hello World!

Hello!

I decided to begin this blog as a way to vent my feelings and to let other people out there dealing with the same things I deal with on a daily basis, know that they are NOT ALONE!  In the process I hope that this is not only therapeutic but a little bit fun as well.