Conor After Another Seizure

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Conor has been on  a good run for the previous 7-10 days and today was pretty much the same until 6:15 this evening when we heard a loud thump uupstairs.  His mom ran upstairs and screamed for help when she saw him convulsing on the floor with thick fluids oozing out of his mouth.  We had to keep him on his side with his head away from any corners or hard objects.   This was Conor's 4th grand mal seizure since Christmas. Conor's convulsions did not appear to last too long compared to some previous seizures ..  approximately 2 minutes.  Stilll 2 minutes of your son in convulsions is enough to scare you all over again. Conor also recovered quite well. The picture above was taken 45 minutes after the seizure and while he was still a bit groggy he was regaining alertness, speech and walking ability.  He is now sleeping soundly exhausted from another seizure.  I just checked and his head was on the side on his pillow  and he was breathing loudly but clearly.  Dad is starting to relax ... a little bit.

Autism, Seizures, Meltdown, Recovery:What a Difference a Day Makes

A day can make a big difference in my son's world of severe autism disorder, intellectual disability and epileptic seizures. Yesterday as I pulled up to his school to pick him up at the end of the day I could hear his voice inside the school and I knew things were not going well. He had been undergoing a very serious meltdown and I won't go into all the details. Today though, 24 hours later I pulled up to the same location and before I turned the corner I could see him at the basketball net. I stopped pulled my camera out and completed the turn. Conor was having fun outdoors, shooting the basketball and he was happy. And Dad is very happy as I type these words and post these pictures of my happy Conor.

Conor Enjoyed Nature With An Osprey Day In His "Back Yard" The North Riverfront Trail, Fredericton

Conor embraced his right to enjoy nature a couple of times today (so far) with fun walking and running in his "back yard" Fredericton's North Riverfront Trail. He also took time to throw some rocks into the St. John River along the way and check out the neighbors, the Osprey family, as they prepared their nest for some new arrivals. It may not be an evidence based treatment for autism but getting outdoors in nature makes his Dad feel much better and I believe it helps Conor too.

Autism and Epilepsy from Facebook to Reality: Conor Experiences Another Seizure

UPDATE: I had originally indicated the the persons with Conor when he had his seizure 2 days ago had not seen convulsions.  That is what I was told when I arrived.  Yesterday though I received the notes of the education aide who was with him throughout the seizure and they indicate he was convulsing for several minutes, in other words a classic tonic-clonic seizure including fall and  convulsions.

Earlier today I posted to my Facebook page and to the Autism Society New Brunswick FB page the link to Tonic-clonic seizures at Epilepsy.com.  I included the note that it was important for persons with autism to be aware of such seizures because of the high number of person who suffer from epileptic seizures including my autistic son.  A few hours later I got a call from the Leo Hayes High School and was informed that Conor had suffered a seizure. They did not think it was Tonic-Clonic although he had fallen and lost consciousness.  When I arrived he was being attended to and was sitting in a wheelchair.  He was groggy with very limited speech and needed assistance getting into the car for transportation home in the Dad-Mobile.  He was tired at home and I insisted he stay on the couch for awhile and rest.   Dad and Mom proceeded to provide the sure fire Spoil Em Rotten Recovery Treatment including supper from Papa John Pizza.

From Facebook to Reality in a Flash.  It can happen.

Severe Autism With Intellectual Disability And Epilepsy Can Be Tough But It's Still a Wonderful World

My Son Conor Wore The Blue on World Autism Awareness Day

I understand some of the criticisms of the day and of thinking that

wearing a color in itself creates autism awareness but as long as people 

raise real autism awareness of the challenges of autism disorders and  the related 

conditions from which so many suffer including self injurious behavior, intellectual disability, epilepsy 

and depression;  that's all I look for and it is what I try to do  365 days a year.

Caring for, advocating for, fighting for my son with severe autism disorder, intellectual disability, tonic clonic seizures and life threatening adverse reactions to an ever changing seizure meds scheme will not bring me down. My son is worth every minute of my time and effort and at the end of each day I believe its a wonderful world and will do my best tomorrow to help my Conor enjoy it as much as I do.

Our Happy Conor is Back! And Dad Is Happy Too!

The top photo above was taken a year and a half ago,  shortly after Conor recoved from a very serious adverse reaction to his seizure med at the time, Lamtrogine, which resulted in two weeks in the hospital including an emergency room visit and 6 days in the ICU where the excellent medical team there, including our family doctor, probably saved his life. 

The second  picture above was taken a few months ago, shortly after Conor started a second medication, Divalproex, after which he became agitated.  I was able to get him outdoors walking at the time which seemed to help. I second guessed myself at that time and continued with the Divalproex despite increased agitation.  A number of weeks ago Conor's Divalproex was increased as per the Neurologist's direction and things have been brutal for Conor since then.  I had to bring him home from school twice because he was aggressive with staff.  He was very aggressive at home with his mother and with me.  He was most aggressive though with himself smashing his head with both hands dozens of times a day.

A week ago I began decreasing Conor's Divalproex meds and he has been off of that medication entirely for a few days.  The result has been positive with his aggression and self injurious behavior dropping sharply and the last couple of days being joyful again.

I am not criticizing the Neurologist, nor am I making a generalization about Divalproex or offering

medical advice.  All I am saying is while on Divalproex Conor suffered with increased Divalproex resulting in increased self injurious behavior and aggression.  The school staff were kept in touch about the medication issue and the withdrawal schedule and noticed the same patterns including the recent return of our joyful, happy Conor.   I won't jump to any big conclusions or assume things will never get bad again but I will say that .... today ... Conor's Dad is one happy camper.

Conor's Back Yard 2014 - Fredericton's North Riverfront Trail

Joy of Conor 2014

I will not pretend, I will never pretend, that autism is just a different way of thinking.  Heather and I love our son too much to lie to the world about the nature of his autism realities, his severe autism, intellectual disability and epileptic seizures.  Like many parents of autistic children I believe it is in his best interest that the world knows the realities  of the complex disorder he endures and that often causes him to suffer and puts his life at risk.  I can face his autism realistically while appreciating every ounce of the joy he himself  brings to our lives. I can marvel at his ability to laugh and hug and enjoy life even though I often see him in pain.  

Conor himself enjoys life and brings us great joy  and with his mother I will always try to return that joy.   I will fight those who misrepresent the disorder, and the at times very harsh symptoms, from which he suffers,  I will NOT back down and .... I will enjoy every bit of the great joy he brings us every day.

Here are some 2014  snap shots of the joy we call Conor.

I Am Hoping for NDP Voices in the NB Legislature to Help Families Advocate for An Adult Autism Care Facility

The picture above is from Conor's 2nd Birthday on February 2,  1998.  The next day we received his autism disorder diagnosis, described initially as Pervasive Developmental Disorder Not Otherwise Specified,  six months after various tests and six months after requesting medical attention because we did not understand his lack of development and we were concerned.  Shortly thereafter as his deficits became more obvious and pronounced the diagnois was changed to Autistic Disorder now part of the DSM-5 Autism Spectrum Disorder. An age 2 diagnosis was rare in those days.

Conor at 3.  Over the first year, post autism diagnosis, we had attended at the  very limited information sessions provided to families with autistic children by the Province of New Brunswick. We had also heard much rhetoric about just accepting your child as he is, accepting his autism, be happy.  Then I attended a parents group meeting (in the pre government funded Autism Community centre days)  At the meeting I found myself surprised to be lectured directly and sternly, by Dawn Bowie,  the mother of an autistic child who also happened to be a registered nurse). From those meetings and connections with other concerned parents in Moncton, Miramichi, Oromocto, Fredericton, and a Saint John family (Heather and Don Chamberlain) began a parent advocacy movement that resulted in an April 1, 2003 announcement of funding for unspecified autism services by then Health Minister Elvy Robichaud. By the end of the Lord government's term the UNB-CEL autism program had been established with early intervention centres. Autism training began for teacher aides and resource teachers and under the Graham government more were trained.  An ill considered decision to close the Stan Cassidy tertiary care team who worked with autistic children under the age of 16 was reversed ... again as a result of advocacy led by parents. 

Conor, still our happy boy, is now 18 and will require decent adult autism care 

 for the rest of his life once his parents grow old and pass  on. 

I am asking in this post for all families with autistic children and adults to consider voting tomorrow for the NDP.  I make this request in order to encourage you to vote for MLA's in the legislature who are committed to advocating for a badly needed adult autism care facility.  Beginning in 1999 parents advocated with some success for early autism intervention and autism trained teacher aides and resource teachers.  Progress in adult autism care has been virtually non existent with autistic adults shipped out of province in some cases, to the Regional Psychiatric Hospital in Campbellton and some have resided for periods of time at least on general hospital wards.  

The fight for adult autism care in NB will not become any easier with the election of one of the 2 parties, Red or Blue, that have governed NB during my entire life and during the last 15 years of autism advocacy.  But at least if some NDP voices are elected, unlike the Blues and Reds,  we will have voices from a party that has publicly committed in its election platform to an adult autism facility.   

If you are voting tomorrow, I respectfully ask you to  please consider voting NDP.