I know it’s been a while since I’ve posted and I want to apologize. Once again life has gotten in the way and I just needed a break. Then when I was ready to start posting again, I kept getting sick. As I type this I am battling the flu. But today I was inspired to write and wanted to share with you all a personal journey that my family has been on. In case you didn’t know today is my 38th birthday and yesterday was my 6th wedding anniversary. The hubby took leave (as some of you know, he is in the Army) so that we could spend everyday this week together just hanging out and having fun. We were going to go and stay on another island for a week, but we both didn’t feel comfortable being away from our boys for such a long period of time and an island away, well is just too far. A couple nights stay-cation on the same island, while they are in the care of my mother, is about as comfortable as we get for the moment. Have attachment issues? Yes we do…lol
Anyway our boys are 4 and 2 years old. Jordan is our first born and as far as we knew, he seemed to be developing normally and even beyond in some aspects. As a baby he was sleeping through the night after a month, only waking up sometimes once at night to eat. He cooed and smiled. He was attentive and curious and looked you in the eye. He turned and looked in the direction when he heard a noise. His eyes would follow me around a room when I moved. He was rolling over at the appropriate age and started crawling when he was supposed to. He began walking between ten and eleven months old. When friends who had babies around his age would complain of sleepless nights and colicky and crying babies. My husband and I looked at each other and thought how “lucky” we were because Jordan was a “good” baby. We first noticed something was “different” with Jordan when he was around 15 months old. He could say elephant, he would wave bye, he could even speak whale. I kid you not, he used to imitate Dory from finding Nemo when he watched the movie. But he never spoke the word bye or said dad (he’s only said it once about 6 months ago) or cup or eat, etc. He just never spoke. He did babble and although we knew he was capable of speaking because he said “elephant” as clear as day a few times and had even blurted out “mom” when he was only four months old, to both my husband and my surprise. But Jordan wasn’t saying words regularly like other kids his age. I would call and talk to my mom and sister and share my concerns about him not really speaking yet, but that was our only real concern with his development.
Our concerns were elevated when my husband’s brother and his wife came to visit us in Hawaii. Pierre’s brother advised him that Kay didn’t think Jordan was developing as he should and noticed some “nontypical” behavior and thought that we should have him checked out to be on the safe side. At first Pierre and I were taken aback, but we read the link they sent us about warning signs of autism and although we could check some things off the list for Jordan we thought, “hey some of these things we can check off for ourselves as well.” We had a good laugh, and teased each other playfully, but still I made an appointment with Jordan’s pediatrician here on post to raise our concerns. At Jordan’s appointment we filled out a questionnaire and spoke with his doctor about Jordan’s lack of communication and possible autism. The doctor looked at Jordan and reassured us that Jordan was not autistic and that he was a boy and boys tend to start speaking later than girls. He stated that Jordan wasn’t, “banging his head against the wall” or any other odd type of behavior and had good eye contact, so he didn’t think it was autism and that Jordan would start talking later, and for us not to worry. We left the appointment feeling semi-assured, (now knowing at least for me, that it was because he was telling me what I wanted to hear, that I didn’t question or push harder.) My son was and would be “okay” and that was all I needed and WANTED to hear from a professional. Big mistake!
Luckily for Jordan and I believe by the grace of God a week later we flew to California for vacation before my husband was to be deployed to Iraq. We had already decided that Jordan and I would remain in Hawaii while my husband was deployed, but while in California we found out that I was pregnant with our 2nd son Jaden. It was at that point I changed my mind and decided that I would rather stay in California to be closer to both our families during this time. So my husband and I in a few weeks time made the quick preparations for Jordan and I to move to California. The move was a nightmare, but in the end it all worked out. Jordan and I stayed with my Aunt in Clovis for about a week until I found us an apartment. During this time my aunt and mom were able to spend a lot of time with Jordan and they both noticed something “different” with Jordan as well. My Aunt told me about a early intervention program that one of her friends was using for her son who had a speech delay. I contacted the Central Valley Regional Center and scheduled an appointment to have Jordan evaluated. My mom went with me to his evaluation. At his evaluation there was a director ?, child psychologist, social worker, Nurse, and one other who I forget their title. They all asked me a series of questions from a questionnaire with what seemed like hundreds of questions. They played with Jordan, watched him play with toys, walk up and down stairs and other different activities. Then they had me fill out a questionanaire that had several questions on it. It was called an MCHAT. At the end of the evaluation I don’t remember who advised me of the results, but I do recall a sense of sadness and concern coming from her as she advised me that Jordan had failed the M-CHAT, which she advised was an autism screening tool. She told me that they didn’t diagnose autism at this early age, but Jordan was showing signs of being on the spectrum. My eyes started to well up with tears. At that moment Jordan looked up at me and I quickly wiped away the tears and smiled at him and put on my happy face for my baby. Jordan was about 17 months old. After the evaluation I was taken to another room to meet with a wonderful woman named Rita who would be our case worker. She would be our go to person for the services that Jordan would receive. Jordan was on par with his gross motor skills and fine motor skills, but in the areas of communication, social awareness and cognitive abilities the scores were low. This qualified Jordan to receive early child intervention services. Jordan would go to a parent participatory type preschool 2 days a week, have speech services once a week and a few weeks later he would have CHAP services 5 days a week. I have to say that although it was hard for me emotionally (I was pregnant and starting to have some complications towards the 3rd trimester, my husband was deployed to Iraq and then finding out our first born “may have autism”) I was an emotional wreck. It was really difficult at first because Jordan wasn’t used to any type of real “structure”. He didn’t want to sit for circle time or snack time. He would struggle and fight to get up and cry, my mom had to start holding him for me because he was so strong and I couldn’t handle him with my belly. He would cry during his CHAP sessions which would make me cry. I felt like he was being tortured. I was so close to ending it because I thought the ABA seemed more like they were training a puppy instead of helping my little boy, but I’m glad we stuck it out because just like all the teachers and therapists said it would get better and slowly but surely it did start to get better. Jordan started to sit with less of a fuss during circle time and snack time only having the occasional melt down. He would complain a little at the start of his CHAP services and then settle down into his routine. Through it all I realized that God was continuously blessing me. If I had not found out I was pregnant, we would have never moved back to California during my husband’s deployment to California and Jordan would not have received services from such a great group of people. I would have never known how strong I could be. Plus I had an awesome and amazing support system around me. There is no way I would have been able to handle all of this without their help, love and support. We were blessed to have been able to get Jordan great help early on and have him swaddled in love and attention while receiving it.
When my husband arrived safely back from his deployment, Jordan was a little over 2 years old. We all moved back to Hawaii and started the process to enroll Jordan in EFMP (which is the Exceptional Family Member Program), they work with military families who have a a family member with special needs. Because Jordan’s teacher Paula (an amazing woman) and case worker Rita in California made sure I had all the appropriate paperwork it was absolutely seamless. I had heard horror stories on numerous military wives social pages about the enrollment process but again God seemed to have been showing his favor on our family. We walked into the EMFP office without an appointment and they were a couple minutes from closing and we found a person that put Jordan’s info in the system to get started that same day because I had all the correct paperwork on me. A week later I was called to schedule an appointment to have Jordan screened by a developmental pediatrician. I was also called by Jordan’s new case worker from the Hawaii child development center. We met with a developmental pediatrician who officially diagnosed Jordan with autism at about 2 1/2 years old. The social worker came to my house and asked me a series of questions, I provided her with all of his documenttation and a couple of weeks later an occupational therapist and child development educator evaluated Jordan. He qualified again for their services. Only there was a big difference due to the state of Hawaii’s lack of funding. His services would be tremendously cut as opposed to what he had been receiving in California. Here in Hawaii, he received speech therapy once a month, occupational therapy once a month, parent participatory play group was only once a week and then someone would come to our home to work with him a couple of times a month from the child development center. Luckily for us Jordan only had a few months before he turned 3 and would then be elegible for pre-school. But we were blessed with an ABA specialist during this time due to Jordan being officially diagnosed with autism, named Ana who came to our house to work with Jordan three times a week. She was amazing with Jordan and literally just played with him but he responded so well to her.
Towards the tail end of Jordan’s early child development services my husband and I attended an iPad for autism seminar in Honolulu. We were impressed with the presenter Dr. Joshua Fouts. We decided to reach out to the organization that he worked for when it was time for us to choose an ABA provider for Jordan once his early intervention services ended. It was one of the best decisions we could have made in terms of services for Jordan. Again but the grace of God for putting us on the right path. The day Jordan turned three his early child intervention services ended and we had him start his services with Behavior Analysis Na Ka Oi. Jordan has a child psychologist named Lawrence who works with him and is amazing and goes above and beyond. We lucked out with his two regular therapists as well. Jordan responds to Joni like he used to with Ana and Kim who’s full time job is actually as a special education pre-school teacher. So Jordan yet again for the last year and a half has been receiving amazing services and making great strides.
Our son Jordan who is now four years old can put together a 45 piece puzzle on his own in minutes. He can spell words like dinosaur, planes, bug, ant, school, flag, and a host of other words.
He can manuever through an ipad like no other. He builds cities with his blocks with buildings and roads. He can make a giraffe out of legos. He can trace his name, lines and shapes. He can draw stick figures and is even starting to write letters on his own without tracing.
He can make a train out of anything. He can make letters out of popsicle sticks.
He knows his colors. He goes to preschool at an elementary school and sits and eats breakfast and lunch in a cafeteria with other kids, with no problems. He sits for circle time and even tries to sing some of the songs. He has started to play and interact with other children at school and at the playground. He can watch an animated movie and act out scenes and make the special effect sounds as they happen because he has each movie or television show memorized after watching it only a couple of times. They think he may have a photographic memory.
But what brought me to happy tears last night and inspired this super long post, was the following.
While sitting on my bed with both my boys I took a picture of my younger son Jaden and then turned and took a picture of Jordan and told him to, “say cheese” and he looked at me and said “say cheese” I repeated it and he repeated it, I said it again and he said it gain. I tried my luck and said, “say wow” and he said, “wow”. I said, say “bye” and he said “bye” I said say “mom” and he said “mom” I said, “say apple” and he said, “apple”. My sister also told me that while she was on the phone with him my mother told Jordan to say, “Hi, Aunty” and he said, “Hi Aunty”!
I shared all of this with you today because first of all I’m overjoyed, feeling truly blessed and felt inspired to write. Secondly because I hope to inspire and encourage other moms who may be dealing with the same type of journey, but most importantly to stress to those who have babies and may notice that your child may be a little “different” to make sure that you have your child checked out and if the doctor tells you nothing is wrong, but you still have that twinge that something is a bit off even though you’re scared of what you might hear, don’t be afraid to reach out to your states early intervention office or another doctor for a second opinion and further evaluation. I believe every state has a similar type of early intervention program for children under the age of three and it is all free regardless of your income. All it takes is your time but it can make a world of difference for your child which is priceless!
In case you were wondering our second son Jaden is not on the autism spectrum. He is a “typical developing”, smart, funny, rambunctious and wild 2 year old who talks a lot :))) and is giving me gray hairs already……lol
I feel very blessed to have two very different and yet equally special little big men and one amazing big man/husband in my life.