When my son was just a little baby, one day out of the blue, at age 16 months old, he just stopped eating. I had no warning, no prior symptoms of any underlying conditions. My baby had just had a full check-up. I tried for days to offer him baby foods, but the same thing would happen, he would slowly just turn his head away and not be willing to accept anything from the baby spoon.
He was already battling a horrible skin condition called Eczema and a daily routine of 20 minute of soak time in warm water, with no bath soaps or lotions were allowed, after the 20 minutes were up, the process of doctor prescription creams were applied and then the 100% cotton clothes had to be washed in chemical free laundry soap, washed 2 times and then dried on hot heat. I did this around 5-6 times a day for weeks on end to help loosen the sores on my babies body and help in any way I could stop the constant scratching to where his skin would pop open and infection would settle in, because of his constant scratching. His little hands were wrapped up with gauze to keep his fingernails out of the open wounds. Many family photo's show his little open sores and wrapped hands.
I can remember after the 6th doctor warned me, that I was just being a worry wart mother ( despite the fact I was a seasoned mother with older children) that it became very apparent to myself that no one in the medical community was really willing to help me figure out why my baby had stopped eating..
I was finally referred to an allergist, because as one doctor said; your baby probably has really bad allergies an should be tested for foods... This process was a waiting period because testing could not be done until he was closer to age two.
I can remember waiting as months had passed by.. it was horrible.. The waiting, the bath soaks, the escaping the house, the constant need of my child to watch anything with wheels rolling back and forth for hours on end, the non stair gaze of no direct to direct eye contact and the babbling that went on for hours on end... I knew as a mother something was not right.. It just didn't seem like my little baby was progressing as my other children had.
We finally had one diagnosis of Asthma .. but that would not explain why my baby had stopped eating.. This consumed me every single waking moment of every single day. One can only image, at this stage of life for any baby that not eating would of been a top priority for any doctor.. but sadly we were turned away again and again. Feeling so frustrated at the world around me, but more so feeling frustrated that I had to be the voice for my baby and could not get anyone to really help me figure out what was going on inside his little body. Yet, I couldn't stop, I couldn't just give up, I couldn't stop worrying.. What if I had not been his voice, what if I had just stopped and taken the suggestions from these doctors...
More doctor visits, more test, more of this, more of that.. the hours spent making phone calls, running from doctor to doctor and hearing the same thing over and over again. At one point, I actually thought about making a t-shirt that would say on the front.. "My Child Stopped Eating" and the back of the shirt would read; "Help me find out WHY" !!
After a long long 6 years plus.. Many doctors later that crossed two separated states.. I was able to contact a local group in my area that highly recommended that I call upon another group of professionals that ran an office that was dedicated to all special needs children. I was happy to make yet one more phone call.. after all, giving up was not an option to me..
I never will forget after 2 months of in house testing, and the results had been returned.. the actual blow I felt in knowing that my son was autistic.. Anger rose up inside myself as to why, none of the prior doctors had ever even mentioned to me that my son could have autism.. I remember sitting briefly in a chair inside my home and thinking to myself.. it would of only taken a few brief moments from any of the 28 doctors plus, to have just listened to the symptoms I was telling them about... really listened to me... and told me it could be my baby had the early stages of autism.. The title, didn't matter, AUTISM would not change how I felt about my son.. the way I endlessly loved my son.. all the memories we had created together.. all those sleepless nights, the busy days.. sleeping with one eye open all the time..He is my son, so it didn't matter. What mattered the most to me is that doctors are suppose to be educated in many things, was autism not one of these? Really.. how many children come through a doctors office in one single day where a mother is going to complain that her baby just one day decided not to eat anything, babbles and doesn't speak, that the baby won't make eye contact.. and the list goes on and on.. This was me after all, telling each doctor the same things over and over again.. with the same deer in the headlight look from each doctor.. !!
REALLY.... why is there not posters up in the waiting room of every doctor office, hospital, school, park .. of the warning signs of AUTISM.. there are magazines, reading books, toys, along with everything else inside a waiting room.. But no early warning signs concerning AUTISM.. had there been one.. I could of clearly seen from reading the poster that my baby had Autism and help for him could of been established many years prior..!!
It's not the label that really matters of the title of AUTISM, it's finding out what is the diagnoses and then going from online group to online group, searching like a hen in a field of straw for what to really do next..
Why is there not one single folder of all the what if's, the steps to follow after the diagnoses, the proper laws concerning any child that has autism.. Why must a parent have to fight for everything that is due to any child with special needs.. this is where my frustration at the system.. really started.. Hearing the words; "Autism", didn't really matter.. because to me, it was everything after this that I have had to continually fight for, for what my son deserves.. In regards to his learning, what and how he views and perceives the world around himself. It's his daily care, all the questions I have that I have to go searching for.. My lord, why must this stress be placed upon any parent with a child who has special needs.
My t-shirt idea.. Front side; "My Child Stopped Eating", the reverse; "My son has "AUTISM" and listing the symptoms might just help another parent.. If this is what it takes to educated those in the medical field, those who have children at home that the parents know something is not right.. plus creating a pamphlet to give to parents that contains a list of doctors, websites, SSI information, the list is endless..
It's not the word "AUTISM", it's the communities in each area that NEED to have information ready and available of the laws for special needs children and all that is available to these children and help for each parent.. that is what has frustrated me over the years.. that I have had to pull away from time spent with my child, to really be his voice and find out this needed information.. when really, it NEEDED to already be there from the start..
This is my mission... by you helping to spread my blog right now, by sharing something in my words, you are helping another mother or father, understand.. they are not alone.. that help is available and they do not have to spend time going from doctor to doctor, online looking for help..
Click HERE to start reading and understanding if you have an autistic child in your home, or perhaps a neighbor or friend or co-worker might need this important information. Please as well click HERE for more information on the early warning signs and symptoms that you may notice in your own baby or child. To search for a diagnoses click HERE For treatment, click HERE
Rights concerning your child, click HERE
State by state listing of agencies, click HERE (doc pdf file)
A list of state practitioners that can help, click HERE
Applying for SSI for any child with special needs, click HERE
Autism medications, click HERE
Complete list of resources, click HERE
Helping parents to cope with autism, click HERE
National Center for Autism, click HERE
Therapy for children with Autism, click HERE
More information on SSI, click HERE
Autism hub, blogs to read, click HERE
Medicaid waver, click HERE
I hope these links are helpful to you or someone you know.. please feel free copy the link of my main blog to your own blog or pass along any link on my blog that you might find helpful to someone else you know.
1 comment:
Thank you for this Sherri. I shall share as I have a few friends that live everyday with this amongst their lives as well.
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