Our Amazing Adventure on the Road of Autism

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            We will start from the very beginning. My husband and I met at my grandmother’s funeral. He was in the military going to the church I grew up in and I had lived out of state and came down to the funeral. It was love at first sight especially for me and I knew he was the one for me. It took him less then two weeks to realize I was the one. We got married a year later. During my husband being in the military we unfortunately had four miscarriages. When he got out of the military, we moved here to Kentucky and became pregnant with our son shortly after moving here. After finding out we were pregnant when I was about 12 weeks along, we were worrying and praying our way thru this one. Around seven months our son tried to come into this world which was a scary thing and at the time we didn’t know for sure what was causing the miscarriages or the early birth. We later found out that there was a blood clot in the umbilical cord. They induced me at 39 weeks after showing up to ER with high blood pressure and a migraine. My labor was very intense for 40 hours. Our son came out blue and white. They couldn't get him to change to a normal color so they took him immediately away from me and my husband. We have later found what caused his loss of oxygen was because of the blood clot that had developed at seven months which went undetected. His body that was blue on one side was from his head to toe which contains his communication, motor, receptive area. Since then we have lost two more babies due to blood clots so we believe our son is our double miracle baby. We are very blessed to have him.

 

            When our son was around six months of age, I started to notice something was different about him. He was not where he was suppose to be as a baby. It wasn’t a first time mom fear, I knew something was off because I had been a nanny, preschool teacher and babysitter for 10 years before having him and had dealt with all different types of children. I wasn’t scared going into mommy hood, since I had had so much experience and knew that I just had this! People that have kids would come to me for advice on how to punish, take care, feed and so forth with their children when I didn’t have any. There was no way that I was going to have a hard time being a mommy, even others had said that to me. So when I started to notice something was “off” I kept my fears to myself for about three months. At the nine month check up I told the doctor about my feelings, he hadn’t start babbling yet, didn’t play with toys, and wouldn't make eye contact. He said to let us give it some more time to allow our son to possibly develop later. In most cases, boys do develop later on things. During nine to twelve months, Cullen became very sick with RSV so we put his development on hold. We also switched doctors. At 18 months, his new doctor said we need to put our son into first steps. He was really worried about him. Our son had not babbled and was underdeveloped in other areas. When first steps was involved, they had put his mental status at around six months. Six months into the therapy our son started showing he is sensory high, meltdowns started, and still no babbling or eye contact. His therapists sat down with me, explaining they wanted to bring in an OT and told me about their concerns. I then looked at them and said “do you think he has autism?” They just looked and me and didn’t say anything. I figured that was what they were thinking he had. I started doing research and had found I was totally wrong about autism. That they weren’t mentally handicapped but were on average 10 times smarter then a “normal” person. They just had a hard time coping in the world and communicating their needs and thoughts. They didn’t understand emotion like we did. They saw things realistic. So if something is done to them or they see something they will most likely do the same thing, not knowing the proper time or place (such as if a parent tapped a child in the face to get his attention, a child with autism may do it however it may actually be a slap across the face). They have difficulty attaching to people. Our son has attachment issues with his daddy. Ever since he was a baby he wouldn't let him hold him, feed him and so forth. Our son is a little better now and at times will sit on his father’s lap and so forth. We still have a lot of work though.They are so smart that many are geniuses. So, as I was researching it, my eyes were open to an entire new world. After that meeting and an OT was brought in we started to see a difference especially in sensory. I think it was more on how I knew how he was feeling at the time and learned to change with him and allow things to happen that I wasn’t doing before when I didn’t understand. He was diagnosed with the SPD and a friend gave me two books, “The out of sync child” and “The out of sync child does activities.” Those two books were amazing and a great eye opener for me to just know what sensory problems were and understanding him made the frustration of dealing with him better and easier for me. I didn’t think he was a terrible or horrible child. We still knew something more was going on but it was a start. The therapists and I gave it a little more longer. We started doing sign language with him and so forth. Around two and a half our son starting babbling some but we were dealing with other issues. He started regressing rapidly. He had started gaining words and skills and then lose them. He would be able to do something one day and forget it the next day. He would do something for a while and then loss it completely. He would gain words and lose them. So we starting doing testing, visiting a physiologist and neurologist. They both felt like he was having silent seizures but it wouldn't show up in the test. He is still getting check for those periodically. We also went on to do other testing such as genetic and so forth and it all came back normal. The psychologist then started doing the testing for autism. By this time I had instincts that it was autism. I wanted to just know what was wrong with my baby so I could be proactive about it and do more research and teach him that way. My husband was having a harder time accepting it. He had fears of our son’s future and what a diagnoses would bring him. Like every dad he had dreams of doing stuff with his child, what his child would be like and so forth. He didn’t want a diagnoses because he was scared it would label our son where as I wanted a diagnoses. The psychologist and our son’s doctor diagnosed him with autism at the age of three years old. When we heard that he had it, we had mixed feelings but were determined to do everything we could to help him.

 

            Our son is now four and we are just at the beginning of our road. He has been such a blessing to our lives and has opened up another world for us. We no longer look at other people out in town and think “ that child needs good discipline” (yes we were one of those people). For awhile our family was not on board at all and we still have trouble with them agreeing on how we discipline or handle things with Cullen. They are starting to come around and either accept him or just have learned to be quiet with what we do. We have learned to be strong people to speak up when you hear someone talking down to your child or any child. We have learned to be advocates for our child and others with autism. We do have bad days and get frustrated which is only human. We have learned to celebrate every milestone even when it is little, to savor every word that our son says cause he may not say it again (for awhile he dropped mommy to say daddy), to also have to have a lot of patience, to live from day to day and not expect much but to love what he does and how he does it. Our son now is at 15 words, he has started to put some of those words together such as “ain’t mom” for thank you mom,  and “hi daddy.” He has learned some sign language and we continue to work on that. He is now mentally around two years old for what he shows us in regards to his understanding and behavior. It may vary from day to day. We bought him a therapy dog that has helped him with social and language skills. He has speech four times a week between school and ABA therapy, he has OT once a week but we are adding more since he still has trouble with daddy touching him. He goes to special education preschool thru the school system and we work with him daily when he gets home. The key to Autism is early intervention. The good thing is now there are so many resources available that weren’t out there just five years ago.

 

            Being a special needs parent can be difficult, such as losing friends because they do not understand or mistreating our son. We feel if you have not accepted him for who he is you don’t need to be around us. We have also have lost friends because of his violence at times. We savor our relationships with the friends we do have. They are very special to us and understand we can’t be the type of friends that constantly are able to call or text them. We long for adult relationships but at the same time our son is our priority. Through Autism, we have made friends who also have a child with Autism. They totally understand our day to day struggles. Another thing, it is ten times harder to keep your marriage relationship together and on the same page. You don’t get one on one time cause your child wakes up all times of the night. You don’t get to go out on dates because you are limited on your sitters and at the same time though you are stronger together, you don’t take for granted the time you have together, and you learned to work together thru thick and then.

 

            Like I said before, although we have our up’s and down’s, we are so thankful to have our son. He has made an amazing difference in our lives and is truly a blessing to others around him.

 



The Mommy Nest would like to thank Nickie for sharing her family with us.