1st Time Moms to a Beautiful Boy who was Newly Diagnosed with Autism; Motherhood is HARD AF & now this Beautiful Adventure we are about to embark on as a family!
February 19th, Caden had his first of now weekly Speech therapy session. Knowing how much Caden dislikes and stresses out being anywhere that resembles a doctors office, and strangers. His therapist is so friendly and animated, she took Caden’s lead even though he was not wanting to engage. Within 15 minutes Caden was ready to GO! He was a trooper though and we manage through it.
Caden’s EEG appointment
February 29th, we finally had our appointment for the EEG. Caden had shown concerns for possibly having absent seizures. This was the hardest appointment by far for us as a family and for Caden. He had to endure a stranger putting 26 electrodes on his head. With his SPD, this was torture! He would not sit or lay still so I had to hold him for almost 30 minutes, while Mama Maggie keep his hands busy and from not pulling the electrodes off. We got the result on Thursday, March 5th in the late evening. GREAT NEWS, Caden is showing NO brain activity of seizures!!! We as mom can exhale completely! If he has any future staring spells, we are to try a more firm pressure approach to getting a reaction. If that does not help, we will keep track and have to go through this process again in the future.
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It has been one year since Caden’s diagnosis of Level 2 ASD ( Autism Spectrum Disorder) and SPD ( Sensory Processing Disorder). And what it a year it was! Around this time last year we had just started with speech therapy and occupational therapy. Having only two in person sessions with each therapist before quarantine, Maggie and I are very grateful for everyone who helped make in home therapy possible (its not just toys). THANK YOU! It has definitely paid off and continues to provide Caden with help in his therapies.
Along with this blog, I do write a monthly newsletter for Family and friends who aren’t into the online/social media thing. I enjoy doing both, however I tend to leave out fun facts or did you know information as the format is different and I’m still learning this whole blog thing * shrug and facepalm* But since I am unable to nap right now, I do a little more writing. It truly is a nice outlet and a way for some downtime just for myself. Again please excuse the typo’s/grammer, etc.
Autism Facts & Resources
Autism affects an estimated 1 in 59 children in the United States today.
Males are 4 times more likely to be diagnosed with Autism
Early intervention affords the best opportunity for healthy development & delivers benefits across a lifespan.
Early intervention Can improve learning , communication, social skills, as well as underlying brain development.
Nearly two-thirds of children with Autism between ages 5 -16 are bullied.
Autism can affect the whole body
More than 1/2 the children with Autism have one or more chronic sleep problems
Early intervention affords the best opportunity & deliver benefits across the lifespan.
An estimated 1/3 of people with Autism are non-verbal
Autism can affect the whole body
More than half of children with Autism have 1 or more chronic sleep problems
As many as 1/3 of the people with Autism have epilepsy ( seizure disorder)
On average, Autism Cost an estimated $60,000 a year through childhood. Bulk of the cost in special services, and lost wages related to increased demands on 1 o both parents. Costs increase with the occurrence of intellectual disability.
Moms of children with ASD, who tend to serve as the Childs case manager & advocate, are less likely to work outside the home. On average, they work fewer hours, earn 56% less than Moms of chidden with no health limitations & 35% less than Moms of children with other disabilities or disorders.
Drowning is among the most leading causes of death of an individuals with Autism.
More information and more of an insight of how you can be a great support for a loved one with Autism along with his or her family! It really does take a village and lots of love.
January 30th, Caden was observed & seen by 5 Doctors over 4.5 hours. At the end of the longest day of Caden’s life so far, we received the conformation of ASD ( Autism Spectrum Disorder) diagnosis. Even though it was what we were expecting to hear, the overwhelming feelings begin to seriously hit. Now we wait for the full reports to come back, along with what treatment route will best fit Caden at this time. We are still on the waitlist for the Lynn Center & start date is aimed for mid May. Caden will have Speech Therapy weekly beginning February 19th.
February 1st, Caden had an in home Occupational Therapy evaluation to see if he qualified for services, see more in depth what gross/fine motor skill are at, & to look for sensory sensitivities . After answering what felt like another million questions, Caden not only has some motor delays, he also has sensory issues within all senses. Caden has SPD, Sensory Processing Disorder. The Occupational Therapist defined Caden behavior as “ Sensory Seeking”. He is seeking input.
What is Sensory Processing Disorder ( SPD)?
Sensory Processing Disorder ( SPD):
Originally called Sensory Integration Dysfunction, is a neurological disorder in which the sensory information that the individual perceives results in abnormal responses. Sensory processing refers to the way the nervous system receives messages from the senses and turns them into responses. For those with Sensory Processing Disorder, sensory information goes into the brain but does not get organized into appropriate responses. Those with SPD perceive and/or respond to sensory information differently than most other people. Unlike people who have impaired sight or hearing, those with Sensory Processing Disorder do detect the sensory information; however, the sensory information gets “mixed up” in their brain and therefore the responses are inappropriate in the context in which they find themselves.
Once we receive the full report from the Occupational therapist, we will then be incorporating Occupational Therapy appointments into our new weekly/monthly routine. In the mean time we have been given some books to add to our library about both ASD & SPD, followed by suggestions of activities & things we can buy/make to help Caden grow in his speech, fine/gross motor skills, also help get him the input he needs, as well as ways to help soothe & calm him when overstimulated.
With all this happening rather fast since the new year started, both Maggie & I have had to resign from * her from her 2nd job and myself from my part time job* jobs. Caden sleep patterns have changed yet again, and although he has never slept through the night, it has gotten worse. Sleep disorders are common among children/adults on the spectrum. We have yet to have any sleep testing done, next on our list of “ MUST “ dos is an appointment with Neurology. * Which is schedule for the end of February *
Needless to say with everything going on Maggie realized how important this time with Caden is & chose to resign. She still works her butt off M-F for an amazing & understanding company. Without their support & understanding this process would & could be more stressful. And as much as I was enjoying the transition back into the work life, with the little sleep I was getting to all the added challenge, I physically & mentally could not give anymore . We agreed as Moms ( and long with the repeated advice of the Doctors) that Caden mental health ,along with what lies ahead for us as a family comes first. Once he is situated & comfortable with everything and on a good routine, then I can go ahead and go back to work.
February 29th, Caden will undergo a EEG to check for conditions as seizures/epilepsy. Seizures and epilepsy tend to be a higher risk in children on the spectrum. One symptom or red flag to watch for is starring spells. I had heard this, but assumed he would have to be starring off for more than a minute for it to be of concern. I was wrong, 10 to 20 seconds is all it takes in a child Caden’s age or younger. Looking back he has had many spells, over the last year and unknowingly I assumed he was day dreaming. To say I didn’t feel a punch in my gut of pure guilt as a mom would be an understatement.
However, despite all that is piling onto our plates, there is always a positive side. We are on the right track to getting Caden the best treatment to gain skills to grow & thrive. Everything we are doing is and will continue to pay off. With this last evaluation on the 1st, the therapist said Caden had made significant improvements in some areas since his first in home evaluation on December 30th, 2019.
We continue to work everyday with Caden along with continued reading, researching, and good old trail and error. We are so grateful for the amazing support , love, prayers we have received from both near and far. We are so thankful and blessed with this amazing little human, words cannot describe the love we have for this guy. Our goal as Moms is to make sure we do everything possible to make sure Caden thrives in all areas of life, and I think we are on the right path to do so. Our goals as parents is help educate those around us about ASD and SPD in order to spread awareness that will lead to more acceptance and kindness.
Caden does not see or feel the world as we do or the average child, he does not see our world through “rose colored glasses” , he world is more of a kaleidoscope. Everyday is different, some more challenging than others, and some down right HELL. The feeling of defeat is heavy and at times almost breaking. However, when Caden laughs, smiles, shouts “ WOW” ,or his colors/numbers, the love that just burst all the heaviness of the day away. And it is always enough to keep pushing and to keep going.
Just some of Caden’s silliness & moments we love
Maggie and I thought we would be the ones teaching Caden about life and what it has to offer, but we were wrong. Caden is the one teaching us about all life has to offer and the beauty of it. And when we listen and are lucky enough to get a glimpse into the world as he views it, it is truly breath taking. Our hearts grow 3 sizes bigger each time with more love, appreciation, and motivation to spread more understanding, compassion, and to make the world a better place. So we will continue to share our Journey with those we love and around us. We love and appreciate our village both near and far, Thank you.
Fun Facts:
April 2nd is Autism Awareness Day * Light it up Blue, wear blue*
Since being diagnosed and beginning the long process of finding out exactly where Caden is on the spectrum, we have been one busy family. While waiting for Caden’s hearing test, we received the more in depth questionnaire from Kaiser SF Autism Center. This took some time to go over & answer everything, but in-between that; Mama Maggie started a 2nd job part time & I have emerge myself into research, reading when I can, & before ending 2019 I have gone back to work on the weekends part time.
During the week while Mama is at work, Caden & I practice the signs and activities the speech therapist suggested. Caden has definitely picked up the sign for “more”. He loves colors, so we practice everyday and he is starting to repeat the colors. Between Maggie and I researching and using the resources suggested , when have also learned different ways to help calm or stimulate Caden. And luckily we both have found that we have close friends who either work with and/or have a child on the spectrum and have been amazing support & resources. Although we are SO new to this journey & it has proven to be very challenging somedays ( with little to no sleep most days) we realized we are a strong team together & there isn’t anything we wouldn’t do for our little guy. He has shown and taught us so much about love & life.
Mommy & Caden having a blast at one of the many museums around the Bay Area
December 30th, Caden passed his hearing test. Whoo Hoo! Glad to know that it wasn’t his hearing affecting his delay in speech. We also had our in home evaluations with the Regional Center speech & ABA therapist. They were here to see if Caden qualified for services & he does.
Within a week of these appointments, we toured the Lynn Center and Caden will be starting their program in May with Speech Therapy twice a week. On January 30th we have our full (3 to 5 hour) day appointment for the evaluation to see where Caden is on the spectrum. And we were referred to an Occupational Therapist and we may have an appointment early February. Life is very hectic and overwhelming , we both as parents are exhausted , but so excited to see the growth already & to dive right in into whatever Caden needs.
Showing Mama how it’s done
So for now, thanks to Amazon Prime we have the book that the ABA therapist recommended, which is full of activities to do with Caden to help with connecting, communication, and learning. Very excited to learn more & grow along our little guy. Thank you for the continued love & support, Happy 2020!
November 8th, 2019 Caden Roger celebrated his 2nd year around the sun. November 13th, 2019 Caden was diagnosed with ASD ( Autism Spectrum Disorder) Although as parents we had already suspected that Caden was uniquely different for most children his age, the actual diagnosis was still overwhelming to receive. We have both cried, celebrated, and cried some more. Both tears of grief and relief. And we are sure more tears of both are sure to come along with our new journey as a family.
After getting the diagnosis, his pediatrician sent a referral for a speech therapy evaluation on November 18th. She also gave us the first screening packet to fill out and mail off for evaluation. Caden fits into all 3 categories for ASD, but where he fall on the spectrum has yet to be known. This packet can take up to 30 days before we hear back.
Waiting for his speech evaluation
November 18th, 2019 we had our first of many appointments to come in Caden’s journey. The evaluation went well for the first 15 mins and then Caden had enough. He got extremely overwhelmed at the doctors office and was ready to go, pillow in hand. He did his best to remain calm and happy during this time, which felt like an entirety. During this time we answered a lot of questions. At the end of the evaluation and observation of Caden, it was in her opinion as of now Caden does not need weekly Speech Therapy.
She will be sending a referral to the center in SF for Autism through Kaiser and we should be receiving another , more invasive packet of questions to feel out. This is the packet we would be getting after the first one we sent out the week prior. Since she is referring out to SF for Caden, she said it can take up to 60 days before we hear back. However, in the mean time we have be referred to a county program for early intervention and with some of these services they come to your home, which for someone Caden’s age may be more beneficial for learning right now. She also sent us home with the first 40 signs to help teach Caden in order to help him better communicate .So that is our next step along with a hearing test on December 30th.
Looking towards tomorrow & taking it a day at a time
Over the next few weeks we will be taking each day as they come, for each day is a new adventure. Education is key and there is a lot of research and information nowadays compared to 25 years ago. So while adjusting to our new daily life we will also be learning from Caden. It’s his world trying to figure out ours and the things we take for granted either excited him or terrify him more than we know or understand, for now. Together as a family with his lead, and along side with his professional support and the people who love him and us we will push through and over come any and all obstacles. We will learn more patience, more kindness, and more importantly love. Thank you for all the love and support we have received so far, we are truly grateful for all of Caden’s Angels. It is our hope with sharing our journey and his story to spread awareness about ASD. Keep an eye up for monthly updates on our awesome little guy!
Momma D’s Blog 