I've been working really hard to get my book started, but tonight I feel like I need to actually make a blog post rather than focus on my book. Things have been very hard lately, being a single mom who is battling a debilitating illness while trying to be there for her special needs five year old can be overwhelming. But, as I sit here with my baby in the crook of my arm, he climbed up a few minutes ago and just snuggled up to me and wanted some lovin from his mommy. It melts my heart when he dose this, and it has been happening more and more lately. There are some moments when I am overwhelmed and crying, and suddenly my beautiful little man climbs up next to me any makes my whole world seem right again.
My beautiful little man was diagnosed with ASD last month, and for those who don't know what that means to put it simply Autism Spectrum Disorder. I've learned over days and nights of research that there is nothing simple that diagnosis because every kid on the spectrum is different. I fell apart the night I found out that my son would battle autism the rest of his life, I looked at it like a bad word...I was naïve, and I had bought into all the stereotypes that I now can't stand after all I've learned in just the last month. I decided the night as I cried my eyes out that I would allow myself to grieve and wallow in my misunderstanding, and the next morning I would 'mommy up' and focus on helping my son get whatever help he needs, and to help me change my parenting style to help him them best.
So, I will tell you that I read and read everything from medical texts to personal stories from other parents. I even learned at Damien's speech therapy that I am apart of a club I never wanted to be in, but now I feel very lucky to be in the club. When you have a child on the spectrum the best support you can get comes from those who know what you go through and can help you because they have been in your shoes. They understand that when your little one has a meltdown it isn't because he is just being bad, it is because he is overwhelmed by sensory overload, and our world can be very scary to his world. It was then that I realized the first thing I had to change. I had spent so long being frustrated, thinking that maybe my son was acting up just to act up, not knowing what he was going through, and then we found out that he is on the spectrum. At first I thought that was the most horrible news to find out that your baby will have to struggle and learn things differently, but after the tears you start to learn that autism isn't a bad word, and my little boy isn't diseased. I learned that he sees the world differently that we do. At that point I had the choice of trying to force him into my world or turning the tables and joining in him his world. It took me about three seconds to decide that I wanted to be in his world, I wanted to understand the things that he has going on, and I wanted to open up my mind and my heart to him, and not care what society expects. I want to be invited into his world, and it has changed everything I've ever known about parenting. I no longer find myself losing my temper when he acts out, I don't care if people stare in public, and I have just calmed down completely learning how to take things one step at a time and not freaking out over nothing. I feel like I've gotten even closer since his diagnosis because I understand more of what he is going through.
People tell me how they feel sorry for me and I don't understand that because now that we know that he is on the spectrum he has been able to get into programs to help him. I've learned that he is very high functioning autistic, our main issue is the speech delay, but I've been told by his speech therapist that it will take time, but he will talk. For now I'm learning how to speak and use sign language along with picture cards, and I'm so proud how quickly my lil man has caught on to signing. I am so proud of him. He has been going to pre-school for the past three weeks and even the teachers can't believe how quickly he has caught on to everything, and everyone has noticed a huge difference in my lil man...he has calmed, he is less aggressive and willing to listen and wait for our next activities, and overall he has just grown up quite a bit in such a short period of time. He is so cuddly and sweet, he comes up to me and gives me big hugs and kisses for no reason and I love it. I love seeing him get excited as we get ready to go out and meet the bus every afternoon.
I will be honest that there are times when things are overwhelming, some days when he is melting down I want to cry because I desperately want to understand what is going on. I've learned to watch for sensory overload because sensory issues are very common with autism, and Damien has a sensory disorder that scares me a lot. He doesn't feel pain the way a normal five year old does, my son can scratch himself to the point of bleeding down his leg and not even cry. That is a very scary thing for a mommy to have a little guy who doesn't always tell you when he is hurt. He will let me know if he is hurt badly, but I am his mommy and I want to know what is wrong even if it is small. I find myself start to cry some days because I know we have a long road ahead of me. I've been blessed that his speech therapist goes our of her way to talk to me about everything and she assured me that the next year will be the most intense and hardest for us. We know that he will be in an autism room when he goes to kindergarten and I am so happy that we live in a school district that offers that because so many people think that autism means that he is slow or can't understand what "normal" kids can, but that isn't true. My son has a very high IQ and is very aware of what you are talking to him about, and he catches onto things very quickly. I have realized that so many people have these preconceived notions about autism and most of them are very wrong, and I was guilty of believing those lies. I've learned so much from my son and the many great people from his school and the Thompson Center, who goes out of their way to help kids on the spectrum in every way possible. It never fails on the days that I am overwhelmed and want to cry for my baby I get to talk to another parent or teacher who tells me how many great things I have to look forward to, and I am able to keep going forward.
One difficult thing is that I'm doing this as a single mom for a few months, and I desperately want to help my family understand about Damien's diagnosis. I want them to know that autism isn't a bad word, and explain that Damien is high function on the spectrum, and he may be on the spectrum, but I have learned how awesome he is...more and more everyday. People often don't see how special these kids are, they are so smart, funny, and have great personalities, and all it takes is stepping into their world rather than pushing them unprepared into a world that terrifies them. My son is teaching me things everyday and I feel so blessed to have him. He doesn't know that he is autistic, he just knows that he is happy being him, and when he is upset I am learning how to help him through it because I can understand why he is upset. I love my lil guy more than anything in this whole world and I know that he is going to do amazing things. We have been focusing a lot on music because he loves it (just like mommy). I thought we had nothing in common and now I see we have so much in common. Are things going to be harder for us...yes, but that just means we have to work together and I know that my lil man will have the best life I can give him.
Having a child on the spectrum is tough, and you have to be willing to change the way your parent, the way your approach your child, get use to the different treatments you have to do, diet changes, and the biggest thing is focusing on routine. I am working on posters and other fun ways to help him keep track of his routine and an award board for when he has earned a good week. He loves helping me do crafts, and to see that smile on his face all the time makes me so happy. He is my miracle, my blessing, and I don't see the fact that he is on the spectrum as some life ending diagnosis. It is just about learning more about Damien's world and how he learns and helping him learn about the world outside of his, and I feel blessed that I am here to help him every step of the way. I will always be here for him to crawl up in the crook of my arm and snuggle until he falls asleep after a hard day of school and speech class. His smile lights up my world, on the days that my own disease has me in so much pain and struggling I can look up at that smile, and then he gives me a huge hug and kiss with a smile added in and my whole world is all better. My son is the most special person in my life, and that means more to me than any boring 'normal' world. I am blessed to have my miracle here next to me.
If you didn't know already, April is National Autism Awareness Month and I strongly encourage you to take a few minutes and learn about Autism Spectrum Disorder. Just like I say about raising awareness for eating disorders and gastroparesis and short gut...things won't change if people lack the education. I was shocked how uneducated I was about ASD. I cried and cried that first night because I thought my son had no life ahead of him, but after doing so much research, all those myths in my head have since gone. I learned that my son has a great opportunity at having a great life. He can learn anything everyone else can, and he already had an almost genius IQ. I learned that speech delay is very common with his dx, and that with the proper help he will be just fine. The biggest thing is not giving up and making sure, as his parent and caregiver that I give him every opportunity available to him. I strongly encourage you to check out 'Autism Speaks' online, they even have a facebook page. You can learn so much about ASD and you would be surprised how many kids and even adults are on the spectrum in some way or another. We need to raise awareness. My son is the coolest, most happy kid I know, and I am blessed to have him snuggled up with me right now...I wouldn't change a thing. If you are looking to a worthy cause to donate to please consider donating to Autism Foundation. There is still so much for us to learn about autism, so many treatments that need funding, and so many kids and people will benefit from donations. I was just as naïve as everyone else, and there are times when I am still overwhelmed and have no idea what I am doing, but there is so much support out there for me and for my son.
If you are a parent who has a child with ASD, and they are newly diagnosed I can tell you I understand where you are. I blamed myself, thinking I did something wrong, but I learned quickly that it wasn't me. The first thing is acceptance, and not looking at this like it is the end of the world because your little one is the same as they were before some doctor told you about ASD. We all stick together, and our kids are all absolutely amazing. There are so many programs that are available for our kiddos and for the parents. Please keep fighting and take the time to see where your kiddo is coming from. Learning about Damien's ASD diagnosis changed me for the better (after my initial meltdown). I no longer lose my temper the way I use to thinking that he was just trying to be difficult, now I know he is overwhelmed and frustrated that I don't understand, and I am lucky now that he is letting me into his world, and the more that happens the closer our bond becomes, the more he trusts me. Everyday I am so proud to be his mom, he catches onto so many new things...everyday he says a word or picks up a new sign or uses his picture cards I can't believe that it has only been a month and he has come so far. I am so proud to be his mommy.
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