This is a personal post that I want to share with you all. I think it is important to share things in hopes that we can help one another. This is about my son. People have started to say things about some of his behaviors. He is 2 and as a mom I had decided that is just his personality. But as people started to point things out and I started to really watch him I realized we might have a problem. Recently some of my sons behaviors have turned from “that is just how he is” to more of “an obsession’.
I did a lot of “googling” and came across Autism. Autism seemed like a very bad word to me and thought there was NO WAY that was what was happening to “my baby.” But each time I would search a personality trait “that word” popped up. While searching I discovered online sources like Autism United and Autism Speaks that were full of information and “checklists”. I started to get past my denial and want to know all the facts. What is autism? What are some common signs of autism?These resources were so helpful to me. I have had absolutely no experience with Autism. The first thing that comes to mind is the movie Rainman. I know that is sad but true.
I discovered that my little boy has many but not ALL the of the characteristics. And then as I continued to search I realized Autism covers a HUGE range of levels! Not all autistic kids are the same. Some function very well while others need constant attention and care.
I decided to make the dreaded phone call to the pediatrician. The doctors office was wonderful and let me express my concerns over the phone. The doctor was concerned and asked that we come in for an evaluation. My first thought was “OH NO!” I had the thoughts that most moms probably have about their child in this situation. “Did I did something wrong?” “If the doctor is worried then it must be bad.” They could not see us for 2 weeks so I took that time to record his behaviors. Every time I saw something or he did something that was out of control I wrote it down. I watched for patterns and triggers.
These are the main issues I saw over and over:
- Social isolation
- Controlling about where things go: He would watch children as they took items and when they were done he would take it and put it back.
- Obsessed with lining things up.
- Nothing can be out of place.
- Problems with eye contact
- Shuts down when a new environment
- Flips out with change in routine (Even as simple as me driving instead of dad)
- Photographic memory: Memorizes routes, placement, etc.
- Extremely anxious about new people or places
- Obsesses over parts of things like the wheels of toys
- Extremely sensitive hearing
- Moods change in an instant
- VERY obsessed with things going back in the proper place!
- Slow to warm up to people even the people we sees all the time (including family)
I saw those things the most. I am so glad my sister in law suggested the journal because I could see patterns and triggers more clearly and learn to avoid them. This was also very helpful for talking to the doctor!
So we saw the doctor for the evaluation. She did interactive tests with him. Some of the things included: pointing to things and seeing if he followed, seeing if he would echo, trying to have a conversation, etc. In the end he did fall on the autism spectrum but he was not on the severe end. In fact she said he would be considered “High Functioning.” She also said many parents of high functioning autistic kids just think their child is extremely shy, extremely anxious and very smart. This is a very hard thing to diagnosis. So she is sending us on to the Psychologist for more behavioral testing. That doctor will also be able to help ME deal with these situations.
So now what? Well the way I see it, I still have the same precious little boy. Nothing has changed except he has a label. I don’t know why these medical labels scare us so much! People will go for years with something but when it is diagnoised it is like it is worse. I want to still treat my child the same. I want him to have the same wonderful life we have visioned for him. I just have to learn to understand him. I need to understand why he does what he does and why he feels what he does. I hope that me understanding him better will mean a happier life for him.
I have faith! I know God has a plan in all of this. Still, it is hard. I will share as much of this journey with you as I can. I would LOVE to hear from you if you know someone with autism. If you have lived through it and have advice, thoughts, experiences to share please do so! I would love to learn from you. We draw strength from one another. Thank you in advance for your support!
Additional resources:
- Autism United
- National Institute of Neurological Disorders
- What are some common signs of autism?
- Autism Speaks has a 100 Day Kit for families who have a child recently diagnosed with autism.
**Support Autism United by using their coupon codes and enter this $150 Kmart gift card giveaway. **
“Autism Spectrum Disorder”, as it is more properly known these days, has a WIDE range of levels of functioning and challenge…I suspect that your son is at the autistic end of things – I know a little bit whereof I speak – I have Asperger’s Syndrome, which is a HIGH-functioning level of autism….
Hi Andrea thanks for your comment. You are right, there is a wide range. I am just learning about all of it now. It is a bit overwhelming at first. I hope to learn more about ASD and the different levels of Autism as we go through this. And in learning more I hope to be able to help him more! Thanks again!
Hi! My name is Cathy and I now work with Laura Parker who has a son who is now 18 who was diagnosed with Autism. She has quite the story that she is always willing to share. She has a website that tells a bit of her story and what she is doing to help others. Please take a look……… http://www.hol-solutions.com. She has spent many years in training and she puts together individual programs for people and works with them. She is brilliant! Her son no longer tests in the autism range. We are located in Gig Harbor, Washington. Her information is on her website. If you have any questions please feel free to call the number on the site.
Thanks so much Kathy! I will check that site out. Sounds wonderful!
I just wanted to let you know you are not alone! (some days it feels that way) My son was diagnosed last year and we have my daughter on the waiting list to have her tested. You are right the “label” changes nothing about you child. It can help to give you some perspective as to why your child does those strange things. I find I have more understanding when he HAS to have 3 layers of clothes plus his jacket on in our wonderful 100+ degree summers. Or why all the lights have to be turned on as soon as we wake up.. (that is my daughter) Sometimes we take things a day (an hour, a minute or a second) at a time. But tomorrow is always another day and it will be a different day. I was given a book that helped a lot it is called. “look at my eyes” by Melanie Fowler. (Im pretty sure you can get it on amazon) The lady that wrote it has an autistic son and her husband has inserts about things from a dads point of view. If ever need to talk, vent what ever I am here.
Thank you so much! I will check out that book. You are an encouragement to me! Yes you are right in that it helps with understanding why they think like they do. Somethings like you mentioned make no sense to me and you but are very necessary for our kids. I am learning that if something makes him feel more secure and it is safe for him then I will go with it. 🙂 And yes each day is different! Thank you again for your encouragement!!! It means alot!
your little boy is such an amazing gift to you- and you are an amazing gift to him as well. early diagnosis will be a huge help in getting you all on the right path to understanding- and learning what works for your family and your little guy. i want to thank you for sharing, because i am sure you are feeling eleventy million emotions and things right now and to take the time to put yourself “out there” is a big deal. (((HUGS)))
Thanks Brett! You are such a good friend! Thanks for listening always! You are such a blessing!
Heather,
Hang in there sweety. You have the right attitude. I’ve oftentimes wondered about Emma. She has many symptoms as well, but they have lessoned as she’s gotten older and we have just learned to adjust and go with the flow. (((Heather)))
Thanks Heather!
As was already said…you totally have the right attitude about it. He is still your sweet little boy and him putting things back in their proper place is a very good trait to have if you ask me. Thanks for sharing this. You just never know what is going on behind the scenes with mommy bloggers and I am sure this will help many other moms who are in your shoes because it is so common now. Hugs!!!!
Thanks Sonya! I am the blessed one. So many moms have helped me already! I hope that in some way I can help others as well. Thanks so much for your friendship and support!
My son is 4 and started showing the exact same patterns as your son, beginning when he was about 18 months old. After many different therapies and meeting with different professionals, we are finally starting to figure out what to call “it”. “It” could be high-functioning autism/asperger’s/ASD. I don’t really care that “it” has a name; I just need to know what I can do to help my son and our family. You are such a great mom for being so on top of “it”! Know you are not alone and there are MANY of us parents out there going through the same thing.
Thank you for sharing!
Janessa that is exactly what I told our dr.I just want to know how to help him and understand him. How to help him live his best life and make each day a little smoother for us both. “it” is a hard thing to figure out. Thanks so much for your comment and encouragement.
Thanks for sharing this story Heather! So many parents are scared of labels and choose to hide from them. Your son is adorable and will only benefit from your love and concern for his well being!
Thanks so much Sharon! Labels are scarey and it is very easy to want to hide and live in denial. I know God has a plan in all of this. 🙂 Thanks for your support Sharon!
You’re definitely not alone. I look back and remember feeling many of the same things you have expressed. My son is autistic and 5 years old now. It is amazing how much we put into that medical label as you said. I have not only accepted it, but find myself teaching others about it as well so everyone can have an understanding about the different levels and varieties that sometimes include MR. Each child is different and I have found many of the autistic children to be very interesting and loving. I know acceptance and grief takes a while but you will get through it (we have no other choice as mothers right?). I found a group that offers mentors in my area and they may have one in yours too. I also found that looking up famous people with autism lets you know that there is much that can be achieved with love and caring. Feel free to contact me if you just want to talk or are looking for more information. (((hugs)))
Hello Shanda! Thanks so much for that! It is so great to know I am not the only one who felt this crazy range of emotions. I will be looking for area groups like you mentioned. That would be wonderful. I am surprised at home many moms there are out there dealing with the same thing! I did look up people (like you mentioned ) with Autism that have gone on to live amazing lives. THey are such an inspiration! I know he can do anything! Thank you again!
Hi there, I have an autistic Son. I live in Australia as far as i know they won’t diagnose Autism untill about 3 …3 an a half. I started noticing things with my Son as early as 8 months old. I need to tell you not to be scared, Embrass him the way he is, See an Occupation therapist, Someone who deals with Autism. We see a team of Specialist on a weekly basis. Its hard owrk but he is 4 and a half, he is still spun out ( as i like to put it) but he is happy, he is talking! he never talked at 2!! He is quite functional and Autism is correctable and mangagable! THe earlie you start with intervention persay ( not diagnoses but help correcting or working with him) the better chance he to function well. Research! and find people that help you!! Diet was one of the Main things with my son!!! See a Naturapath! Also an Oastopath as that helped alot with my sons midline brain connections! Don’t fear, there are many of us mumns out there in the same boat! and even though you may feel alone, your not <3. We should start a page and share advice i think <3
Love and light Hayley xo
Hi Hayley! Thank you so much for your kind words of encouragement. I have been reading up on diet and will be researching this further. Thank you for your suggestions. It helps me alot to learn from others who have experience.
Wow I
Lets try this again. I wish I could hug every one of you and tell you it’s going to be ok. While parenting a child on the autistic spectrum can be a challenge. It can be a total BLAST to. My son was 15 in august and is a smart wonderful insightful kid, when I don’t want to strangle him.
Anybody who wants to talk to an old pro feel free to drop me a line.
[email protected]
Going to be making a blog about raising my son after the holidays if anybody is interested
Hi Sally! Thanks so much for your comment. I would love to read about your story! Please let me know when your blog goes up. Stories like your son’s is so encouraging to me! Thank you!
Hi Heather, I am a Grandmother of a 10 year old autistic grandson, and light of my life . He is so lovable, but not always when he does’t get his own way LOL.He was not Dx until 4years. My daughter is doing everything possible to see that he will have a productive life. This includes casin free, he is allegic to milk and products, and now going to go gluten free, which both can, but not always affect the spectrum. She is counselor and does not want to medicate him. He really displays more distracted signs at home, just starting to show it at school. Always has had social isolation but didn’t interfer with learning. Just follow your instincts and read read read, and you both will adjust. Join a Good support group in your area.
Hi Judy! Thank you for the encouragement! My son is also worse at home and I also will not medicate. I have been reading up on the gluten and casin free diets. Are they helpful for your grandson? I would love to hear more about that. Thank you again!
I worked with kids on the spectrum as a behavioral therapist for 5 years, and I just wanted to send you and your family good thoughts and let you know that these days there are a lot of resources available for families as well as children (ACT Today has a good list of family support groups) and the Autism community is really helpful and supportive of one another. You’ve got a LOT of people who are in the same boat as you, which I’m sure is sometimes nice to know. Best of luck on your journey!
Thanks Carolyn! You are right! I am have been amazed and so thankful at the support I have already found. It amazed me how many families are experiences this and yet so many do not understand it. Thanks for suggesting ACT Today. I will check that out.
My little brother has asbergers autism. My parents treated him just like all the rest of us. He was never told that he was damaged, mentally disabled, or given any label. The schools were great with him. He is brilliant with anything to do with animals, he can tell you everything about them. he is 35 years old, he lives by himself(with family support of course) and he works a job. He Our local vocational school taught him a skill which he still uses. He is a bus boy at a local Bob Evans, they love him there, and he is happy. It might be unusual for some peoples houses to see figures set up in kitchen cupboards but not for my brother. Give your child love and patience and let God guide you. It will work out.
Thank you so much for your comment! That is so encouraging!!
My son who is almost 4yo was diagnosed with high-functioning autism and sensory processing disorder just recently. I always knew long before that there were gonna be some bumps in the road with him and was prepared! He just started out with delays that kept piling up and getting more severe. My son was tested around 2 to 2.5yo and I was told he was testing out at the age level of a 12 month old in every category. When I really started to think it was ASD and was looking for the characteristics I started seeing them. He also has trouble sleeping which is also a characteristic and very moody in certain situations and would have “freak-outs” on us no matter where we were!!
Thankfully where I live (VA) they have a program here called Early Intervention that starts at the age of 2 where they come to your home and assess your child and recommend therapies that your child will need and then provide it at a cost efficient with your income level. We did in home therapy with him for a while until there was availability in the school system for special needs preschool (which starts at 2.5 years old here). We got a wonderful teacher who also raised a high-functioning autistic child and she has been a tremendous help to us with our son.
He is almost 4 and he is a very outgoing child who tries to talk to other kids and play with them as well. His speech has improved greatly although he still has trouble understanding questions and being able to answer them. His sensory is still an issue in that he doesn’t understand the danger of things like running in front of a moving car and jumping from the top of a swing set tree house. It takes A LOT of patience and I have learned to take deep breaths and keep moving forward and know that every day he is going to learn something new and surprise us every day with it.
He is a blessing because he has helped me to learn better patience and I have been able to really take the time to appreciate all of the wonderful things he CAN do. And I have taken that patience and applied it to everyday life for myself, work and our daughter.
Hello Nicki! Thank you so much for your comment! That is a wonderful program you are talking about. I will see if they have anything like that in Houston area. At home is where we really see these things in full action. Those programs should be available everywhere! This is all so new to me. My son also has developed alot of issues with his sleep. All these things I thought were just “how he was” until I realized they were all characteristics of autism and then it all “made sense” . I have so much to learn. I appreciate moms like you that are in the same boat and share your stories! I agree with you completely on everything you said. Thank you again!
My son is 6 and is autistic. He is high functioning as well and was not diagnosed until he was 4 1/2. Prior to that he was diagnosed with an expressive speech disorder. It is scary, huh? Feel free to email me or chat me up on Facebook anytime if you have questions or just need a shoulder. HUGS
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I have a little brother (he’s 13 now) that has been diagnosed with Asperger’s Syndrome. It took many years for the doctors to finally diagnose him, but with the doctors’ help and my mom’s research, he is now thriving in school and in his social life. It was a relief to be able so find so many helpful resources and support groups that offer great advice.
[…] you may know I was recently introduced to autism. (Read more about my story here. ) At first this is so over whelming! Where do you turn? Who do you see? How do you know if that is […]
Thank you so much for the helpful information.
I have 2 nephew’s that have Autism, sometimes it’s a struggle for their family, but those are the 2 sweetest boys you could ever meet. One of them is really involved in group things, but the other can only do so much, his is more severe, hang strong, I had a sister that had Down’s Syndrome, she lived to be 31, I miss her so much. Thanks for your writeup.