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Love and Determination

As I said here I am changing things up!  I want this blog to not only document our journey but inspire through other families stories.  I want to empower parents to be the expert on their child!  It does take a village and life dishes us some unexpected bumps in our roads, they are sometimes large pot holes!… but I often find comfort in the success of others.  I want to celebrate these journeys!  I want to notice…. and I want to do a happy dance for these parents, children and adults who choose to ROCK their one life out!  Live it to the best of their abilities while advocating for their children and other peoples children!  That is what life is…..living it up to the best of your ability!  Don’t ya think?  No regrets!

Here I give you Steve and Jason English…..there is no introduction large enough for these two.  A son and his father brought together by fate.   Two people who live their best life every day!  I am so inspired and so lucky to call them my friends!  Enjoy……

In Steve’s words……

Steve's son: Raising a child with Auditory processing Disorder

In 1981 I had ended a long term relationship and was going on with my life as a single gay man. One day when I was glancing through The Reader, a local Chicago newspaper, I spotted a simple advertisement asking for Foster Parents for Special Needs children. I kept seeing it week after week and was enthralled. At this point in my life thirty years ago as a gay man I never really considered the option of being a “father”, having children.

I did go through the foster parent home study and received a foster care license. I did not ever have  a foster child from the  agency, they wanted to place older teenage boys who were severely and multiply handicapped. A child I felt inappropriate for my age and single lifestyle. The more I thought about a child I realized I was primed to be a parent of a child I could adopt and call my own. I was well aware of the homophobia that existed in the child welfare system. I knew in my heart a child who had a loving and safe home could care less about the sexual orientation of a caring parent. I chose never to mention my sexual orientation and never deny it if the topic came up. I also was willing to take a younger child at higher risk.

I had a history as a recreation therapist working with the geriatric population specializing in stroke rehabilitation, sensory stimulation and reality orientation. I located Jason through a national adoption network. He seemed a perfect fit. He had suffered a stroke, was diagnosed with cerebral palsy and severe developmental delays. He was born with congenital heart disease and had open heart surgery to repair the two holes in his heart. The left side of his face drooped as well as his left eye was blind and nearly closed. He was reported to have Gran Mal and Petit mal seizures. The only things he said was “no” and “whats that ?”.  He had a severe drooling problem.   It was predicted he would soon stop developing and certainly never be able to read or to form vocabulary. Jason was not potty trained and would not accomplish that final task until he was six years old.  Jason had a severe auditory process problem. The best way to describe it in hindsight is that it was like he was deaf to certain sounds and verbalization’s.

Steve's Son:  Raising an adoptive child with special needs

I initially met Jason, his social workers, foster family and teachers in Massachusetts. Prior to meeting him I was told he would not make eye contact and did not connect with people. After a sleepless night I met Jason … I walked into the room where he was playing.  He had a mop of rich red curly hair that was poorly cut and covering this eyes. I said “Hello”. He looked up and spread his arms open wide and moaned. I picked him up….. he looked into my eyes. I feel in love.

Jason babbled non-stop and explored. His  tiny fingers played with the threads of the crotched shade pulls and chattered. I thought, what are these experts talking about he’s  talking non-stop….. we simply do not understand his language. My job would be to unlock his world and bring him into mine. One reason he was locked out, I realized later, was due to the heavy doses of medications to curb his seizures. Medications he never needed because he had never had a observable seizure.

Auditory Processing Disorder:  Raising a child with special needs

 

I left Massachusetts still not being approved for his adoption. I had to wait while the decision was made. I drove to the Boston Airport crying all the way, sad that I was not taking “my baby” home. Six weeks later I brought Jason “home” and told him all the way he used to be a sick baby but no more sick boy. Jason had learned the role as a sick baby and believed it. I needed to break his belief system.

Prior to living with me Jason had OT, PT, Speech and monthly blood draws to test the toxic levels of drugs he was taking.  I chose to have Jason meet his pediatrician and stop all therapies for three months other than his speech at school. Three months later we went in for his OT and PT evaluations to start therapy. I was amazed both disciplines said he was not the child that his hefty medical records described. Both OT and PT said there was no reason for any of their therapies. I was astounded. I told him the English boys were kickin’ butt !

We enrolled in Lekotek a lending library of toys for special needs children in Evanston. Much to my surprise and the therapists Jason was playing with toys that were age appropriate despite his severe delays .  Again, this fact contradicted his medical records. Jason had many toys and often the “in” toys because it was the way he began to connect with peers. Two children playing do not necessarily need language. He began to make friends.

The first year we read non-stop and  I held Jason almost everywhere we went. Slung to the side of my hip in order for his face to be in direct contact with my eyes. He did not focus or look at people when they spoke to him. I constantly turned his chin to my face when I spoke to him so he would learn eye contact. I did this when others spoke to him as well. I also was like a non-stop speaking documentary voice over telling him everything thing we were about to do and describing in detail exactly what we were doing. I was told by one expert the inability to connect and make eye contact could be in part due to the lack of bonding with a mother. I then started quiet time sessions with him. He would lay naked on my bare chest and I would gently sing to him and talk to him recreating a mother carrying and nurturing her unborn baby. He changed. He focused.

He learned to focus and follow with early video games. I taught him to read through matchbox cars on a road of letter shapes. He watched Wheel of Fortune to understand word formation with vowels. We read non-stop. The second year he was with me during his school Christmas break we worked. When he returned to school he told his teacher he had a present for her. He took out his book, My Shirt Is Red, and read the book to her. We were on our way.

Six month after placement I lied to his pediatrician and neurologist, telling each the other  wanted to cutback on his seizure medication. Jason laughed from his belly and walked in a straight line for the first time. I laughed and told him he was no longer a rutabaga. ( a state induced by drugs ) His world opened up. In the later part of his third year he began his terrible twos and I loved it. His defiance, determination and personality emerged. I learned time out and behavior modification. He was funny and smart. Example, once having a temper tantrum in public, I placed him in timeout on the floor of a moving bus during rush hour and said “ timeout for screaming”  ( and I would do this anywhere ) and picked up a book to pretend to read to break eye contact. He continued to scream people looked at me like I was crazy or neglectful. After a few seconds, without eye contact, I asked “ Are you done yet?”.  Stopping long enough to speak he replied an angry “NO!” Calmly I replied, “Well, you let me know when you are done.” “Okay”, he responded. A few seconds past he climbed in my lap and I asked about his day in school, never mentioned his negative behavior again. Its over, its done. I rewarded his good or socially appropriate behavior and ignored his negative and inappropriate behavior all through his life.

Adolescence was a breeze, no problems. No drugs and no alcohol. In later years I wondered why ? A friend pointed out I never had alcohol in the house. That was for several reasons. One, I was a struggling single parent I couldn’t afford it and there is nothing worse than having too much to drink and waking up to energetic toddler. While controversial I believe a child should never see a parent drunk or impaired by alcohol or drugs as it opens the door and gives permission for abuse of both. I taught Jason to embrace life, love and face problems head on.

Adolescence was highlighted by his multiple trips with Dad to the hair salon to strip his hair and dye it to purple, orange and lime green. When he started his first summer job I told him he could then pay for his own hair dye. The colored hair stopped at that point. When he first mentioned he wanted his hair dyed a bright neon color I thought….. “Thats all he needs to be, the disabled kid with strange hair.” A social worker pointed out he wanted to be the boy with bright hair and not the disabled kid and she was correct. Dying his hair in school where it was not popular boosted his popularity and appreciation of is bravery by students. Once a well known school jock came up to him and said “ It looks really cool. You have bigger balls than I do. “

Jason was the first disabled student to work in Maggie Daily’s Gallery 37 summer arts program and did so for four years. He excelled in art as a student with strong visual learning abilities over compensating for his auditory processing deficits.

Much of Jason’s school was tuition-ed out to a private school or in a public special education classroom. I fought for the public school classrooms. The private schools were always wrong because many private schools were filled children with behavior problems because they had been diagnosed so late in their development.   Their learning disabilities had turned into behavioral issues. As he approached high school I wanted him in our local high school but the services were not there. Right about this time I was asked for Jason to join as a plaintiff in the class action lawsuit, Cory H vs The Chicago Board of Education. This was a landmark lawsuit, the first time all special education students were suing a school system in federal court based on the Americans with Disability Act. The pending lawsuit created his first high school IEP to include 30 people from the Chicago Board of Education. Jason was the first non physically disabled student to be assigned an aid for note taking and tutoring due to his auditory processing problem.  Jason entered high school in special education classes and by the end of his first year he had been mainstreamed into all regular education classes and graduated with a regular education diploma. He graduated with honors as the most outstanding senior art student and most improved academic student. During the Awards Assembly I was astounded yet again not only by the awards but by the student population standing , clapping and hooting and hollering. Upon leaving high school his teachers and guidance counselor said no matter  how much  he had learned from them, they and the student body had learned more from knowing him. As we silently walked away I remind Jason. “ The English men kick ass. “  Yep we do, Dad.” he said.

Raising a child with special needs: Over coming all obstacles

Today Jason lives independently in Evanston in his own apartment with minimal tutoring and support services from The Center for Independent Futures. He has an active social life and volunteers at Ten Thousand Villages as well as works once a month at The Center. Jason loves to write poetry and has two volumes full of poems he has written. Two years ago  through social media I located his biological mother, father and four grown sisters. His parents were forced to give Jason up at birth. Every birthday and Mothers Day I knew his mother ached.   I chose to fill her void and give her permission to have her son. The reunion has been a miracle. Jason has visited both his parents, although divorced, and done so independently from me. He maintains at least weekly phone calls with his mother and frequent contacts with his sister and new niece by email and facebook. Last year he was able to meet his paternal grandmother and great grandmother of 104.  She was delighted to meet him before she died this year.

“ He kicks ass.” And I am blessed and humbled each day.

Seriously, what reads love and determination more then my friends words about his beautiful son!  Some of you locally know Steve.  He and his partner Ryan own and operate Blossom Boys located in the Beverly neighborhood of Chicago.  Stop in and check the place out. You will not be sorry!  You can connect with them on facebook at Blossom Boys.  Don’t forget when you see him to “high 5” this father and his son too if he is there helping out that day.  This world is a better place because of this family!

Titanic

Most gorgeous ship to live on ocean waters,

With breathe taking beauty sparkle in our eyes,

Sail under clear blue night sky.

Bring hope and joy to America.

Captain and his ship like love at first sight,

No one could foresee how beautiful you were,

Now you lay in eternal rest on the ocean floor.

By: Jason English

Make this weekend great….find greatness in what you do and share it with others!

 

 

 

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About Kathryn

I am a mom of 6, 5 boys and 1 beautiful girl. We live life to the fullest, as best we can! Some days are good and some are bad but we push through and some how have a smile on our face at the end of the day! We have a little bit of this and a little bit of that in our family including Down Syndrome and Gluten Intolerance.

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