Autism, Intro into our family

Autism Mom Looking for Encouragement

The holidays are usually my favorite time of year. This year a new set of challenges have made for a very difficult holiday season. My family and I are staying in a hotel for almost 2 weeks while we visit family for Christmas. Now 2 adults and 3 young kids in a hotel room is stressful enough on it’s own. My son Tommy is Autistic and is what some people call a runner (I like to think of him as more of an explorer). He will try and leave without an adult and he will just keep going. As you may have guessed, I now wake up constantly during the night in a panic thinking my child may have gotten up in the middle of the night and disappeared. On top of that, now my autistic child is in a new strange environment and his sleep patterns are all out of whack. 3 days in a row now I have either not gone to bed until 2 AM or I have had to wake up at 4:30AM after getting almost no sleep because that is when he chose to get up for the day. We have been up since about 430 this morning. By WE I mean Tom and I. My husband and other kids are still sleeping….in the same room…..with my yipping explorer and his loud iPad. Needless to say, now my husband (who NEVER gets up with Tommy or stays up with Tommy) is not a happy camper either because his precious beauty sleep is being interrupted. Instead of trying to help he is just critizing me for being on my phone. Yesterday was no better either. It consisted of a full day of trying to keep my son from sticking his fingers in his mouth while my husband drove us all around in the car ( as if we hadn’t all been in the car for hours of traveling for 2 days before that). Oh, let’s not forget how I almost had a meltdown of my own in the line at a chocolate store we visited. My son has a very hard time standing still (unless its in front of an iPad) . I just wanted to take a short tour of the chocolate factory which only lasted about 4 minutes because Tom couldn’t stand still and not yip ( there was an echo in the hallway so he just had to get in a couple of loud screams of course). I can’t tell you how many times I have had a complete stranger tell my kid to shhhhh. Seriously?!?! I don’t know you lady!!!! Don’t tell my kid what to do when I am standing right there. Then, I was standing in the line to buy some chocolate and Tommy couldn’t stand still or stop putting his hands in his mouth and I felt like the entire store was just staring at us. I was seconds away from crying right in front of everyone and the lady in front of me in line let me go before her. She will never know how much that saved me! Always be kind to strangers!!!!!!! Anyway, I could really use some encouragement in the next few days because I am having a very hard time getting in the Christmas spirit. So, comment and share and comment and share again! If you know the struggle I want to hear from you.
Thanks in advance!

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Autism, Intro into our family, Uncategorized

Autism: Before, During, and Immediately After the Diagnosis

When my son Tommy was about 18 months old his grandmother came to visit us. While she was there she mentioned that she was concerned with his development and we should take him to the pediatrician to have him checked out. I am so thankful that she spoke up and told me she thought something was wrong. At the time I didn’t think there was anything wrong with him. Some kids take longer to talk than others. My older son had taken a long time to talk. Once she explained her concerns I could see them too. He never came to you when you called his name. Most of the time he wouldn’t even act like he heard you. He had stopped looking at your face. He never spoke. You could clap your hands right next to his ears and he wouldn’t even turn his head. His great grandparents had also noticed his differences and their guess was that he may be deaf. So to the pediatrician we went. Now, I think it is important for you to know that we were at the pediatricians office at least 2 times a month back then and all the times we were there the pediatrician never once expressed concern for Tommy’s development. Maybe that is what had given me a false sense of security about Tommy. I assumed if there were a problem that the doctor would tell me. He hadn’t said a word about anything being wrong with him. Once I told him of our concerns he was immediately on top of it. He referred us to a handful of places to have tests and evaluations done. We had his eyes checked, his hearing checked, a speech therapy evaluation, an occupational therapy evaluation, a physical therapy evaluation, and finally a visit with a neurologist to review all of the testing. The whole process took about 6 months and not once would anyone tell me what was suddenly obvious to me, my son was Autistic. When this all started I wasn’t even aware that Autism existed. I consider myself to be an extremely intelligent individual (and so modest) and I didn’t even know it existed before God showed it to me.
About a month into all of the testing I was flipping through the channels and I landed on a movie called Mercury Rising. This movie has been around since the late 90s and I never had an interest in watching it. I had heard the title of course but I had no idea what it was about. I don’t even know what it was that made me stop on that channel. The movie had basically just started and I was watching this adorable little boy sit in his special needs class and act just like Tommy. Well, he was a lot more advanced than Tommy but he didn’t look at people when he spoke and he was really into this puzzle book that his teacher gave him. Eventually the movie reveals this genius child has Autism and the plot begins! I knew then that my son was probably Autistic. It was my “ah ha” moment! I searched autism and came upon the Autism Speaks website. This was my first look at Autism. I found out that it was a spectrum and that the abilities of people on the spectrum ranged based on where they fell. I found out that some kids speak and function almost normally in society and that others never develop speech and may even end up in assisted living facilities. You may be wondering how a supposedly intelligent person spent 20 something years not knowing about Autism. My theory is that God chose not to reveal it to me until it was the right time. Had I known sooner I may have been able to have him diagnosed sooner. I can remember now seeing signs as early as 9 months old but at the time I didn’t even know they were signs. It may not have made a difference at all though. I was told by multiple people that most doctors wont diagnose a child as Autistic until after their 3rd birthday . Tommy was diagnosed by a neurologist at 2 years old so he was already diagnosed earlier than most children at the time. I feel like God chose to keep Tommy’s condition from me as long as he did because he knew we never would have had a 3rd child if we had known before that Tommy was Autistic. I was already pregnant when we started looking into Tommy’s development . Once I knew it was Autism all I wanted was a confirmation and to know that he wasn’t on the severe side of the spectrum. When I asked the therapists that we’re evaluating him if they thought it was Autism they wouldn’t say. I was told that it could be because his older brother did all of his talking for him or that we may not have given him enough attention so he had become introverted. They all said that they couldn’t tell me if it was Autism because a Doctor had to diagnose him. For 6 long pregnant months I struggled with the uncertainty of it all and I held hope that he wasn’t severe and that eventually he would probably just be a genius with a few social issues. I had to work on the day that Tommy was diagnosed so my husband took him to his appointment with the neurologist. According to his story, the neurologist was in the room with my husband and my son for a total of 5 minutes and he told them that according to all of the testing and his observation Tommy was severely autistic. He also said that Tommy was a beautiful boy and that we were very lucky because he was so affectionate. Many kids with severe Autism are very sensitive to touch but Tommy is hypo sensitive so he loves being cuddled.
To confirm that it was Autism and to make sure that he didn’t suffer from seizures (also a common part of Autism), the neurologist set us up with a 24 hour hospital evaluation. He doesn’t have seizures an no other conditions were found from his testing thankfully. I lot has happened since Tommy was diagnosed almost 3 years ago and eventually I’m sure I will tell you all about him so be sure and follow my blog for updates!
I want to finish with what I hope you can learn from my experiences . First, educate yourself on the signs of Autism. You can actually screen your child for autism by using this link here .
Second, take your child’s development seriously and don’t assume the doctor will tell you if something is wrong. In fact, don’t assume anyone will point it out! Telling a parent that you don’t think their child is “normal” is not something that anyone wants to bring up and some people will just assume you are already aware.
Finally, I want to encourage you to take action for your child and don’t bury your head in the sand. Get them as much help as you can as soon as you can! Most states have some sort of program which provides therapy for special needs children as well as typical children who may have trouble speaking. If you are told you qualify for any type of therapy I would suggest you get it set up right away. Early intervention is key to helping your child improve. An added bonus to beginning therapy is that while you wait for your child to finish their sessions you can make friends with other parents of special needs children. Personally I have made 3 wonderful Autism mom friends who I am so thankful for. We can relate to each other’s struggles and we teach each other different methods of intervention. Hopefully this blog can also be a place where you can find resources and connect with other people. Since Autism has so many different treatments and symptoms and severities there is a lot of different information out there. It can be overwhelming. Take it all one day at a time and always remember that you are not alone!

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