So suit up. Autism, at its worst, can rob you of a lot of things. Autistic children may not ever learn to talk or care for themselves. But they will still give you joy and teach you many things about love and gratitude. Autistic children may grow up to need support, but have happy, productive, and fulfilling lives. Then, with diagnosis in hand and therapies started, reach out. Join a support group. Read books. Write a blog. Join the online autism spectrum community — made up of ASD people, their friends and loved ones, doctors, therapists, teachers, and more.
They are an amazing group of people whose arms are open to you. I just made that discovery myself. This is not a tragedy. And I am not alone. For the sake of brevity, I used a male pronoun. You can even print it off the internet. Either way, your doctor will know about it. Thank you.
It might sound crazy, but I am really looking forward to finally having testing done eta to be determined just so I know. This was a great insight!! Before I read this I couldnt sleep at the thought of my son having more challenges then he already does … But it will be ok! Thank you for this read.
I love that your blog has gone viral because you are writing wonderful things like this and getting info out there that people need so much! Gosh, I love how you write! This seems almost exactly our journey with our 3 year old, just recently diagnosed. I am so grateful to have found your blog. Where did you get your child diagnosed. He will be 3 in September Begin with your pediatrician. The doctor can go from there, but typically will refer you to a developmental pediatrician.
I was thining the exact same thing,words right out of my mouth for certain. Her style is informative yet soothing,extremely caring in multiple facets;the diagnosis,her son,our children etc. The voice,tone,syntax all of it lol I can almost hear it as if it were being read aloud,maternal for lack of a more fitting phrase. I found you recently through a Facebook friend. I have three children. My middle child is on the high functioning end of the spectrum, and I can relate to so many of the posts I have spent time here reading.
I look forward to reading many more posts from you going forward. I was wondering if you had read Welcome to Holland? Thank you for this and thank you for allowing me to reflect. My son has had serious sleep issues since he was an infant. I could NOT get him to sleep. The crazy things I had to do to get him to sleep……we were desperate.
Our neighbors, our relatives, everyone it seemed thought there was something wrong with us that we could not handle this infant. Finally a friend of mine figured out it was not lullybyes he need to fall asleep…it was loud rock music. She took him in her arms, turned up the volume, danced with him vigorously and he was asleep in 30 seconds. This was at 6 months of age. We then rocked him to sleep to loud rock music until he was 3 yo and too heavy. Then we used a rocking chair for a while.
Then at 4 yo we had to strap him in his car seat and drive around till he was asleep.
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Next we resorted to Benadryl and finally had to discuss it with a developmental pediatrician. From years of age he took various medications to help him sleep. Now at 11 yo he takes Melatonin at night. Without the Melatonin he cannot fall asleep, unless he is really totally exhausted. This post took me back to that scary time when I was seeking answers and support at the beginning.
For me the diagnosis brought along with a huge whammy of grieving certainty. A fact. My son has autism. My son just turned 4 and is going to get diagnosed by an autism team next month. At 3 autism was ruled out although I knew he was or he definitely had something. So now a specialist said yes he might be autistic and made an appointment for evaluation. My heart broke because although I knew to hear from a doctor is a different story. By 2, I had suspiciions, and when he put his head through a plate glass window from head banging just days before turning 2, he went to his pediatrician who confirmed the suspicions right after his 2nd birthday.
She was sympathetic—she had an autistic child too. And this is a psych RN as well!
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On good days we play board games and have good times. On bad, all heck breaks loose. All 3 autie kids play YMCA soccer and are pretty decent at it when they concentrate during the spring and fall seasons. They love swimming, 2 of them like gardening, 1 is fascinated in science, 1 loves Nascar and anything car, 1 is learning how to do more domestically inclined things, the middle one helps mom in the kitchen of his own free will, etc.
They, like any child, have their strengths and weaknesses. The sadness, that is from our own desires and wishes for them to have had a different life. It is our own selfish desires that create our mourning. The goal for ours is to help them grow and be able to live independently as adults.
Maybe be able to go on to college if they desire, or be able to hold down a job. Take it a day at a time…so what if dreams change…they are just that—dreams. From a mother of a 25 year old girl, I wish there was an Internet and your blog when she was 2 years old. Excellent post!! I found it through a Facebook friend and will share it amongst my FB friends.
Thank you for writing about each and every symptom and also sharing your experience with that symptom. I especially thank you for pointing out that if parents have any question at all they should get an autism screening. Awesome points!! What a wonderful post!
I will also say that I have met some wonderful, amazing people in the autism community and have made great friends. I truly do not feel alone in this as I first did when we received the diagnosis. You have said everything in a way I wish I could have. Two points I would love to stress that I have tried to explain to people….. The earlier the better. I have lost friends when I have suggested they have their child checked for language delay or god forbid autism.
I have not been wrong in my suspicions so far. Now I bite my tongue and tell myself it is their journey not mine. I grieved the loss off the child I thought he would be, but I attacked this new situation with determination. If he had not been my first child I would have noticed the signs of autism earlier.
Now my son is 11 yo and he is amazing. I credit his amazing progress to all the early intervention he had. I have deffinately become a better parent and a better person along this crazy trip through life with a child on the autism spectrum. Well said. I am putting this post in my back pocket to pull out any time I might meet someone in need. Please do! Parents of young kids need to be aware of autism and not let valuable time pass by. I think this is a wonderful post. Of course, it is only the tip of the iceberg. It was hard for me to get anyone to listen.
I was searching the internet trying, desperately, to find a way to get people to listen to my mommy instincts. For three years I fought family, friends, the pediatrician—even my husband. That was the first person who told me I had reason to be concerned. I switched pediatricians despite knowing I had an excellent one, despite this and got a referral. When I finally got my diagnosis, I broke down and cried. Not out of grief, but out of relief. NOW, I could finally get some official help. We worked on therapies at home.
I enrolled him in private social therapy and private occupational therapy although they doubted he was ASD. High functioning autistic kids are harder to get diagnosed. So it is only the tip of the iceberg.
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You just reminded me of a big one I forgot. Our son never did that. Thanks for sharing. Thank you — I remember so much of this. The evaluations, the fears, the lack of sleep. I mean that is all he would wear. I had to buy 5 pair so he had a pair for each day of preschool and wash repeatedly.
At 5 an 6 he repeated jingles off the tv — um…repeatedly. We then had to deal with frustration, depression and an IEP in school for agression. More therapy. He is 8 now. We have problems. We have good days and we have bad days. But with diagnosis in hand we fight the good fight and walk through fire for him. You rock. Hello, can you please describe the shoulder shrugging tic? How often did it occur, facial expression? My daughter is doing this lifting with her shoulders a few times in a row and then stops.
Its not an all day thing either. As a speech language pathologist with my arms wide open to kiddos and parents facing challenge of ASD… I applaud this post. It needs to written on a pamphlet and put where every parent can reach out and grab it. SOOOO well done! If anyone wants to put it on a pamphlet, just let me know.
First of all thank you for this post. I just read your post and that was all of the signs I saw and told I was paranoid or worry too damn much. I am so glad I was not the only one who saw these signs and got help despite resistant from family, my husband, friends and her doctor.
Now people know I was not crazy when I got a medical and educational diagnosis of ASD for my 3 year old when she was 2 and a half years old. I know of someone in my area I would love to email this to her and ask if she can print some out for me in pamphlet form. She is a great friend and neighbor who is a graphic designer and printer. Again thanks for making me feel I am not alone in this! Krissy Bright. Thank you again for opening your heart to share what so many parents feel. I had to push for more than a YEAR for a diagnosis. I knew at 12 months, when the lights went out with my daughter, that she had autism.
As I like to say, when you have met one autistic child, you have met ONE autistic child. They are all unique, just like a typical child. Whether it is autism or a stomach bug, feel confident that you are doing everything you can for your child. And then smile that God blessed you with her. I had more than one conversation having to convince them myself. What is scary about this — and I wish every pediatrician realized — is that you can knock back regression with intensive therapy.
A typical child might have a few fun and educational therapy sessions? In my dream world, all children would have the benefit of that kind of play anyway. We knew she had special needs hearing issues, club feet and a possible undiagnosed syndrome. This past summer after changing pediatricians to one who specialized in special needs children, she was diagnosed with failure to thrive and PDD-NOS pervasive Development Delay- Not otherwise Specified.
We were actually thrilled to get this diagnosis since this is what we had felt from the beginning obviously our daughter had very serious delays, not walking, talking, low muscle tone etc. That would have been the end of our search for answers — the answers we had received fit the child we saw in front of us. So we had a plan to help her and we were ready to move forward. I was beginning the journey of researching autism. And then she had a seizure. Out of the blue. She spiked a fever one morning in June, had an incredible meltdown, over the top.
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Wore her self out and fell asleep. I happened to be sitting next to her while she slept and noticed her start to twitch in her sleep. I am an EMT so it only took me a few seconds to realize she was having a seizure so off we ran to the ER. Fever induced seizure, no big deal, lots of kids get them. Two weeks later another seizure but no fever. That second seizure has changed our lives forever!
Until a child has more than one seizure and or a seizure without a fever an EEG is not a standard test that is run. Because our daughter had a 2nd seizure and one with no fever the automatic next step was to do an EEG to look for signs of epilepsy. Not good news we were thinking. I thank God every day that she had those seizures now because what we found out from the EEG was amazing, frightening, horrifying, and incredible all at the same time. I put rare in quotes because I am not so sure that it is rare, just rarely found in my opinion.
Turns out that the actual seizures she had are totally unrelated to the ESES, they just helped us find it. Basically in ESES, when the child goes to sleep instead of the brain quieting down to rest, repair, and grow the electrical brain activity in these children actually increases. Like a million little internal brain seizures. These children are getting no deep sleep. And you will never see it on the outside. These children may be very light or difficult sleepers. The reason I am posting this here is because children with ESES are very commonly mistakenly diagnosed with autism.
Generally the same age of onset. The child may be developing completely normally and all of a sudden start regressing, losing speech and fine motor abilities. The earlier it is caught, the more chance that delays or loss of function can be reversed. Flu-like syndrome is a side effect of many treatments used in cancer care.
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With some of the medications the flu-like syndrome is dose related and not all of the symptoms of flu are present with each of the medications mentioned. The time frame for the flu-like syndrome also varies, as well as the severity of the flu-like symptoms. Symptoms may reappear or worsen if treatment is interrupted and then resumed or if the dose is increased. Flu-like ymptoms resolve once treatment is stopped completely. Ask your health care professional to explain the medications you will be taking to treat your cancer. Specifically, ask what type of side effects you can expect and what will be done to prevent or control the side effects.
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