Home > Family Services > Moving Out

Moving Out

This is a guest post by Pat Kemp, Executive Vice President – Marketing, Corporate Relations and Development at Autism Speaks and the father of a young man with autism.

Tears were pouring down my cheeks as I was typing my 5 sentence letter to my son explaining to him that he was being asked to leave of my house and would not be living with me anymore.  See, Ryan is not just any child; he is a special needs child who functions on the low end of the autism spectrum.  He is nonverbal and very vulnerable.  However, according to my attorney, Ryan could not live me after he was 18 if I wanted him to be eligible for housing and other subsidies.  It was time for him to learn how to ‘live on his own’.  How sad, yet I wrote and signed and dated it because it was how the ‘system’ worked.  I still needed him protected in a safe and secure environment.  So we went house hunting.

Ryan’s first home after ‘declaring his independence’ was a house that I was able to rent in his name at OATS (Offering Alternative Therapies with Smiles).  OATS is a 55 acre horse farm in northern Oakland County that provides horseback riding therapies for individuals with special needs.  Ryan had been a participant in the program there since it opened up in the late 90’s, so he was familiar with the surroundings.  Plus, the entire property was fenced in so I at least could feel that he was safe.  This worked out for a couple of years until I found a house to rent on a lake (Ryan loves the water) in Davisburg.  The landlord has a daughter with Aspergers and lives next door, so he understands the situation.

I moved Ryan into his new home in Davisburg and put a sign on the front door that says “Ryan’s Party Place”.  It is his private bachelor pad with athlete pictures on the walls, a pinball machine, an air hockey machine, etc.  He visits my place once or twice a week and we stay in contact so I know he is safe and he knows I care about him.  We call it that he needs some ‘Dad time’.  I also need my ‘Ryan time.’

The next challenge was to get Ryan a job and teach him how to communicate better on his own.  First things first, time to get a job.  Ryan loves the outdoors.  He and I have volunteered for many years to feed the horses and clean the stalls at OATS on Sunday mornings.  I knew he had the skills to do this job, but OATS is a 501(c) 3 charity so I didn’t want to ask for Ryan to get a paying job there.  After many months we secured a janitorial services job 8 hours/week at The Palace of Auburn Hills.  Since Ryan loves the Pistons, I thought it would be a natural for him.  So far, so good.  He has his good days and his not so good days.  He gets to wear a special shirt with his name badge on it which he likes a lot.  He also gets to eat lunch at the employee cafeteria which he really enjoys.

Communication is a longer term project.  For Ryan to really function independently, his communication skills need to improve exponentially.  I bought him an iPad and we are programming that now.  We have met with communication specialists and have ideas that we want to work on.  Yet, like many children with special needs, Ryan inevitably surfaces another problem that needs to be addressed.  Most recently it was an incredible need for O.T. which we are working on with specialists.  Who knows what tomorrow will bring.  Hopefully sunshine.  Ryan likes sunshine.  One thing I learned to accept a long time ago is that autism is like running a marathon, it isn’t a sprint.  Patience, focus, persistence and advocacy are the keys to providing our children a brighter future than today.  There are never ending needs for services for these individuals.  We, as parents and advocates of individuals with special needs, need to stick together and fight for their rights.  What I have also learned is that it is not important whether Ryan lives with me or not.  I wasn’t giving him enough credit that he was ready to live on his own.  However, I will never forget how difficult it was for me to sign that letter 9 years ago.  My tears are still wet on my cheeks, but at the end of the day, I think I made the right decision.

  1. July 14, 2011 at 12:03 pm

    Thanks so much for sharing this, Pat. Best, best wishes to you, Ryan, and your whole family!

  2. July 14, 2011 at 1:24 pm

    This post really means a lot to me. We have 4 children the youngest being a mixed set of twins who will be 3 in 3 days. 9 months ago our son Asher was diagnosed with autism after we noticed some things about Asher that were different. We have had some phenomenal help from a local agency. He has had a specialist visit in our home 3 x a week for the last 9 months and Monday on his 3rd birthday he will get to start to a specialized pre school that will provide 1×1 work with him all through CDS here in Maine. I couldn’t be more thankful to them. Even though Asher is showing incredible improvement in his social skills and his communication, I would be lying if I didn’t say that I worry about what the future holds for him being able to function in “real life”. Reading your story reminded me that, as you said, “Patience, focus, persistence and advocacy are the keys to providing our children a brighter future than today”, there is always hope, and yes you made the right decision. I too had to make a decision. I left my job (with 4 kids and a mortgage) to come home and be a stay home dad so I could personally oversee Ashers’ and his brothers’ and sister’s development, best decision of my life.

    Continued success!

  3. July 14, 2011 at 2:05 pm

    This was such a beautiful and relatable story that nearly brought tears to my eyes. My son is three and like your son has communication issues. However like you I am not pessimistic but am optimistic about his speech development. Their progress may feel like a marathon, but for a runner the marathon comes to an end. I say this to mean there is a light at the end of the tunnel and progress will be made. Thank you for sharing.

  4. Michele Johnson
    July 14, 2011 at 11:20 pm

    Thanks for sharing your stories. I have a 2 year old grand-daughter who was recently diagnosed so this is all new to me. I read your life experiences to gain insight in hopes i can better understand about autism and help my Mya as well as other children. Please keep sharing it really helps to know what i can look forward to

  5. Suzanne T Mack
    July 15, 2011 at 8:12 am

    Pat

    I cried reading your wonderful post about Ryan. You are such an incredible father I can not imagine how hard it was for you to do the “right thing” for your son. Someone once told me when Kerry was young that God made him autistic so I could help people. I said how ridiculous. Reading your post and knowing your commitment to children and families on the spectrum all I can say is that we are all very lucky to have you just as Ryan is. I hope Kerry and I can meet him someday and with all the progress Kerry has made that we all can help young adults transition into adulthood wherever they are on the spectrum heaven knows there are not enough resources available today out there. Thanks for sharing your wonderful story Pat.

    Suzane Mack, Kerry Magro’s mom

  6. Laura
    July 15, 2011 at 9:33 am

    Thank you for sharing your story, it is wonderful. I have a 17 year old with Asperger’s and know this day is coming soon. I am filled with anxiety and fear so your story gives me hope. Thank you.

    Laura, Mom to Connor.

  7. July 15, 2011 at 10:47 am

    It is truly SAD how the “system” works. I cried reading this story as my son has autism as well. Thank u for sharing!!

  8. Judy Schaefer
    July 15, 2011 at 10:57 am

    You are stronger than I’ll ever be. I can tell from your blog that this was a big decision for you, but one that you had to make. My son is high functioning, but I know that there are decisions that I need to make in the near future that I have been putting off. I hope all goes well for you and your son.

  9. Katie Wright
    July 15, 2011 at 11:50 am

    So beautifully said Pat! I cannot yet imagine how hard this transition is. You have gone such a incredible job, and all as a single parent. Thank you for sharing your story.

  10. July 15, 2011 at 6:58 pm

    This is such a precious story. And you are such an awesome father. My husband and I have been raising our grand daughter since birth.. ( Now 5) She was diagnosed autistic about 8 months ago. She is very verbal. But its stories like this and her love that make me keep my head up and know i am doing the right thing.. We may soon get her baby brother to raise as well, and I think he has autism also.. So keep writing these wonderful stories so I may be able to deal with 2 of them.. Thank you and God Bless

  11. Peter Bell
    July 15, 2011 at 10:37 pm

    Let me echo what has already been said, Pat. You are an amazing father who has paved a path for many others to follow. Thank you for your leadership, your passion, your genuineness and your insights. So much for all of us to learn. You’re a good man.

  12. Caroline
    July 15, 2011 at 11:49 pm

    I sit at my pc wondering what to say as I too have a child who has special needs (ADHD/Aspergers). Everyday brings new wonders and new fears. It’s been a tough year and everyday as a (single parent) family we grow stronger. From hearing stories like your own it brings me such hope and calms my fears slightly……thank you for sharing and here’s to Ryan’s continuing successes x.

  13. Gene Bensinger
    July 18, 2011 at 9:23 am

    Pat – I’m more than a bit confused. People with disabilities in MI are entitled to school based services until age 26 (which is a lot better than most states.) Effecting a guardianship arrangement at age 18 oughtn’t disqualify anyone from any services like housing or employment (although some radical advocates in MI oppose the basic notion of guardianship). Special needs trusts shield the disabled individual from being disqualified for services. Are you speaking with the right attorney or are things a lot different than I think?

  14. Jen Smith
    July 18, 2011 at 8:54 pm

    Thank you Pat for your guidence this last weekend as I walk into the courtroom tomorrow for my daughters guardianship hearing I know I will be crossing over into another journey of autism. Thank you for this story and leading the way!

  15. Pauline
    July 22, 2011 at 8:56 am

    Not quite 2 years for us since we enrolled our son to a care home. I wish I had your strength with the safety factor. I don’t get along with the director of his home since I’m the bad cop when it comes to advocacy but on the other hand the care-givers are a different story. Very nice. I’m with you in regards to tears running down my cheeks as our son is growing up not before our eyes. I’m so sad but happy that we’re not alone and your Ryan seems outstanding. Thanks for sharing.

  16. Lori Andersen
    July 22, 2011 at 1:23 pm

    Thank you for sharing your story. My son, Owen, has Aspergers. We have been getting him ready to go away to college. No matter what the challenges we’ve faced over the years, he always seems to get through them better that I do. No matter what happens we will always worry about them. It’s good to hear that independence is a reality for Aspergers adults.

  17. Velvet
    July 22, 2011 at 6:09 pm

    God Bless you and your son, tears on the cheeks,& in our hearts, My daughter is 19 soon to be 20, I have guardianship,her communication and social skills are a constant work in progress,The older we both get the more worried I get about who will take care of her when we are gone…

  18. Jackery Bells
    July 23, 2011 at 1:48 am

    Thank you Pat for a touching story. I too have a daughter have PDD she in the 2nd grade. She changing rapidly everyday now she knowing how to read and plus she loves the outside. At the beginning, yes it was a challenge but putting God first it shown me howto take on the challenge. So God bless you and Ryan just remember this God knows best.

  19. tessy
    July 23, 2011 at 10:18 pm

    Thank you so much for sharing your story, I can`t stop crying, I`m thinking about your son, but I thinking about my son too, his only 9 years old & I`m overweigth 150lb, I got this feeling right now I`m not taking care of my self, who`s going to watch my son for me, better than me, your story really touch my heart, it`s better start it right now. Again thank you.

  20. October 7, 2011 at 1:03 am

    Great all guys sharing the story.I am very impressed to read the post.I like this blog.

  1. July 15, 2011 at 2:22 pm

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Follow

Get every new post delivered to your Inbox.

Join 1,057 other followers

%d bloggers like this: