Cooper's Autism

My amazing kiddo is 6 years old. Cooper is completely nonverbal although never quiet. On the Autism Spectrum he comes in on the severe side. He was diagnosed at age 3 after a long, frustrating journey. He is not potty trained. He has no self care. He is extremely rigid. He is delayed in all areas. At least that’s what the professionals tell me. We have no crystal ball to tell us what the future holds. And somehow the Autism Instruction Manual got lost in the mail so we are totally winging it. He also has many sensory issues which include troubles eating and pooping. He loves stimming on sounds and visuals. He also has some level of Apraxia.

After saying all this clinical stuff I’d like to introduce you to the most amazing kid I know. He came into my life with the force of a tornado and hasn’t stopped moving since he was born.

 

 

This is the real Cooper. The one that I know. He is funny. And absolutely charming and beautiful. He finds joy in the simplest things. And every day is the best day of his life. He knows no greed or jealousy. He doesn’t understand complex emotions. He spends his day laughing at silly sounds and watching train videos. He begs to be tickled and squeezed. When he laughs my heart actually melts. And on more than one occasion I have been told by people in Cooper’s life that he changed their lives. He is a pure joy.

Join us on our journey. Super Cooper and I are navigating this Autism Journey together. We laugh and cry and struggle. I share the good, the bad and the ugly. And we’d love to have you join us.

Applied Behavior Analysis

In April 2017, we made the tough decision to pull Cooper out of Kindergarten and Public Education and do in-home ABA Therapy. Cooper is on the waiting list to get into a center setting as well. Currently he receives 20 hours of therapy a week.

It was very hard to be done and say goodbye to the typical education path. It feelt wrong in a way. Kids grow up and they go to school. That’s what’s supposed to happen. I felt like we were saying goodbye to what’s supposed to be normal and again finding our own version.

 

 

 

 

 

Comments

  • Connie

    January 18, 2014 at 7:36 am
    Reply

    I have a huge knot in my throat reading this. I've spent close to Two hours reading your story. My son is 19 months and […] Read MoreI have a huge knot in my throat reading this. I've spent close to Two hours reading your story. My son is 19 months and is exactly like cooper. I have been worried sick and this makes me think my gut might be right :( my sons speech therapist has no answer as to why my son doesn't talk or mimic she keeps telling us to wait it out....I can relate in so many ways. Cooper is beautiful! Read Less

    • findingcoopersvoice
      to Connie

      January 18, 2014 at 5:21 pm
      Reply

      Hi there. I read your comment when I woke up this morning and I have been thinking about it all morning as I run around […] Read MoreHi there. I read your comment when I woke up this morning and I have been thinking about it all morning as I run around with the kids. My husband is on a fishing trip so I am flying solo. Holy busy! I want so much to know what to say because I know exactly how you feel. It's so scary. First, remember to breathe. I know that sounds silly but I will get in these panic moments and I will forget to breathe. And remember, you are not alone. I didn't really notice Cooper's delays until he turned two and from age two to almost three I felt so alone. So isolated. And I have an amazing husband and even he couldn't help me. I cried all the time. Medical professionals made me feel even worse. Some told me to wait...some made me feel judged. Blogging has helped me in so many ways. I can write about my fears and anger and exhaustion and all of these other amazing moms find me. It has been life changing. And lastly, try not to let this consume you. (I know this is impossible...trust me!) Your son is so young and time is on his side. I promise it will get better. He will improve. To be honest, Cooper got more and more naughty up until 33 months or so. He couldn't talk and really started to act out. Signing made a huge difference and also finding activities that he loved. And lastly, it's getting better every day. This kid is growing up. And deep down I pray every second that it's going to be fine. I'm here for you mama. Email me anytime. Good luck in your journey. And as another amazing blogger told me when I first started...Slay them dragons! That meant so much to me!! Read Less

      • Brett Curtis
        to findingcoopersvoice

        August 23, 2015 at 11:24 am
        Reply

        I'm a nurse of 12 years with 6 years experience with disabled children, and then we had two Autistic boys of our own, one quite […] Read MoreI'm a nurse of 12 years with 6 years experience with disabled children, and then we had two Autistic boys of our own, one quite profound (6 y.o.) but out younger one (4 in 2015) looks and behaves very similarly to Cooper. We've grieved for their loss of a full life, for our misery in dealing with their uncontrolled behaviour, but it is as it is, and we have to do what's best for them and us. We speak to them and wait for a response, giving them time to listen, think, think a bit more, forget what's happening, then go back to thinking...then form a response with gentle guidance and time for them to change their mind as they choose.....their instant response isn't always what they really want. It's a tough road for everyone, a long road that needs to be a patient one. Because of their delay they need simple requests and plenty of time to respond. Gentle, simple, positive and patient interaction. Best wishes to everyone looking after anyone on the spectrum. Read Less

      • amma
        to findingcoopersvoice

        February 11, 2017 at 11:14 pm
        Reply

        Hi I have a five year old son who is autistic and non verbal. He is saying some words on his own terms and gets […] Read MoreHi I have a five year old son who is autistic and non verbal. He is saying some words on his own terms and gets frustrated very easily. Although i'm trying my best and doing different activities with him but I still feel as if i'm missing out on something else that I could do to help him. I am so scared and worried for his future. I know exactly how you feel and pray that God gives you a lot of mental and physical strength and guide you through you journey with your child. This journey is not an easy one! It may seem like a long, dark and a lonely one but remember there is always light at the end of the tunnel! Take a day at a time and keep on going. Read Less

        • findingcoopersvoice
          to amma

          February 12, 2017 at 2:21 pm
          Reply

          It can be very lonely and isolating. But you will be the best mom possible to your son. I know if. Hugs to you

  • the jay train

    February 24, 2014 at 3:30 pm
    Reply

    Hey There :-) Thanks for stopping by my blog. I read through your story and Coopers story. I will read your posts later today […] Read MoreHey There :-) Thanks for stopping by my blog. I read through your story and Coopers story. I will read your posts later today but I just wanted to say that you def shouldn't get discouraged. It seems like Cooper is already making progress and I believe he will continue to do so. If you read any of my posts from 3 years ago (or older) you will see a huge difference in where my son was "speech wise" back then compared to now. His language development has been a giant sized part of my writing. When my son was 3, he also wasn't using any sounds other than vowel ones and 2 months after he turned 4 he said he loved me for the 1st time. (Still without pronouncing the V sound). Now, even though he's not as advanced as a typical 6 year old, he is quite the little chatter box. Hang in there. I think reading other peoples stories and writing about your own is huge and has helped me a lot in this life. Read Less

    • findingcoopersvoice
      to the jay train

      February 24, 2014 at 3:40 pm
      Reply

      Really?!? He said 'love you!' My heart just aches as I read your comment. I want it so badly I can taste it. I tell […] Read MoreReally?!? He said 'love you!' My heart just aches as I read your comment. I want it so badly I can taste it. I tell Cooper I love him 100 times a day. Just once I want to hear it back. For now, I settle for a ridiculous amounts of hugs and kisses! I am going to read your blog back a bit too. I want to read about the language specifically. Thanks! Read Less

  • The Vanilla Housewife

    February 26, 2014 at 6:04 pm
    Reply

    My tears just fell when I read he jumped. Way to go! My 3yo has delays in speech too. We relied on sign language up […] Read MoreMy tears just fell when I read he jumped. Way to go! My 3yo has delays in speech too. We relied on sign language up until she was 2. She mimics but has the tendency to turn the consonats around. Like snow, she says it as nows. Improving though. She can come up with 3 word sentes. She talks a lot but we can't understand her sometimes. It can be painful to wacth if you think about what other kids her age can already say. I have learned never to compare her with other kids anymore. That way I can focus on her improvements. Sending you hugs and prayers. Read Less

    • Hi there! I feel the same way when I read about other kiddo's finally jumping. It is the best victory! I totally understand the pain […] Read MoreHi there! I feel the same way when I read about other kiddo's finally jumping. It is the best victory! I totally understand the pain of seeing other kids. I've even had to avoid facebook at times. Sending you hugs and prayers too! Read Less

  • Cyn

    March 30, 2014 at 3:12 am
    Reply

    I stumbled across your blog via "Normal Is the New Boring" blog. First....Cooper is a lovely boy who has an amazing Mom. Take […] Read MoreI stumbled across your blog via "Normal Is the New Boring" blog. First....Cooper is a lovely boy who has an amazing Mom. Take a deep breathe and know you are not on a sprint but on a marathon. It is so hard when you sit with all the professionals and they tell you what your child can't do and you feel like you are not getting answers or enough forward momentum. I have been there.....I'm in the trenches too but my son is 6-1/2 now. I remember what 2 and 3 felt like when he was non-verbal and we were at the beginning of an Autism diagnosis. Feel free to drop by my blog and share in my son's journey to know you are not alone *hugs* What has helped my son? He has Apraxia and we were told the same thing by SLP's that he had to make sounds before they could say "motor speech delay." I would get a second opinion but from a speech pathologist who specializes in motor speech delay. My son did vowels first too which by the way are the hardest sounds to do first. I found out our son was showing the apraxia before he could make sounds etc by opening and closing his mouth like he was trying out the movements but couldn't get the words out. Gross motor delays go hand in hand with it too. MORE THAN WORDS by Fern Sussman from the Hanen Centre is amazing. It is a program that teaches parents how to get communication happening in our everyday lives in a way that is manageable for our daily lives and makes sense. You can order a book and DVD, attend work shops or get book from the library. This was a game changer for our family. PROMPT method of speech therapy. It's an amazing method where the SLP touches the face and jaw to help the child find the sounds. More and more SLP's are using this method. I am going to read more of your blog over the days to come but I hope some of this gives you solace:) Read Less

    • findingcoopersvoice
      to Cyn

      March 30, 2014 at 3:09 pm
      Reply

      Hey there. I just spent some time on your blog as well. So glad you found me. Our sons sound very similar you are just […] Read MoreHey there. I just spent some time on your blog as well. So glad you found me. Our sons sound very similar you are just a few years ahead of me. So question for you. I have heard that a 'typical' apraxia symptom is that kids can't make vowel sounds. I am not sure if that is true or not. Cooper (and your son) seem to be the opposite. And you put that vowel sounds are harder? Cooper very rarely makes any sound with the front of his mouth. Everything comes from his throat. He does blow and suck air so that is good. And will make the 'm' and 'n' sound if prompted. When did your son start making the non vowel sounds? Read Less

      • Cyn
        to findingcoopersvoice

        March 31, 2014 at 12:31 am
        Reply

        Hi :) Well Johnny started making non vowel sounds again when he was 3-1/2. It began with Mama, Dada, wompa, babee and I […] Read MoreHi :) Well Johnny started making non vowel sounds again when he was 3-1/2. It began with Mama, Dada, wompa, babee and I would say it went to 10 sounds he was using for words consistently. When he was 4-1/2 the SLP at the Hanen Centre "More Than Words" told me she wanted him to work hard on vowel sounds because she could see by watching his mouth move he was trying to do them already by the way he was moving his lips/mouth but no sound would come out. She wanted to build on his sound approximations by moving toward word approximations by getting him to say part of the words and gain confidence and loosen up his face muscles. My son has always had a beautiful smile but when he tried to speak or make sounds it was like his face was so tight. So the vowels were like instead of trying to say "Sara" she said say "Air-ah" We would pick 5 words that we wanted him to try and we would do this and it seemed to jumpstart things. Especially since he would go around and point at stuff and grunt from the back of the throat already so we had some sounds to work with. The School Board Autism SLP was in disagreement and wanted to concentrate on the non-vowel sounds first. I have to say that the other SLP's idea seemed to loosen up his jaw/face muscles and seemed to get him to take more risks and really try and make more sounds because he could hear it was working. I do have to add that every child is different and I had professionals telling me that he should make this sound etc but I have sat in on motor speech therapy and heard the SLP be surprised that he could make a sound (a letter) that was not expected at this point. He was jumping ahead:) She told me its not always so cut and dry but the SLP's know the order of letter sounds that kids are expected to achieve and the order they learn them "usually". I will try and dig up some stuff in my son's file for you but here is what I have on hand: 3 years old: M P N H W 4 years old: G B T D F K Again my son pushes very hard when it comes to sounds because the SLP's discovered that by 4 years old he has spent a lot of time listening to everyone speak and understands language, how the words should be said, correct sounds etc. But the problem is that even though he knows this its like aiming at target A and your brain keeps saying hit target B. Lots and lots of practice and achieving certain sounds first that will trigger and trick the brain to try a more complex sound. i.e. the T sound. My son could do the D sound so the SLP switched out the letter T for words that began with the letter D. We had him practice over and over and then slowly try to show him using PROMPT how to do the T sound. It worked because the letter D puts the tongue in the right place for the letter T to come. :) I know how hard this all is and like I said earlier...this is a marathon we are running with our boys. Cooper is communicating with you and there is more then one way to communicate. What you are doing and he is doing right now is a big start:) BTW have you tried using PEC's symbols yet? A simple "I want" strip? This helped my son as well quite a lot because he's a visual learner and he was able to get folks at school to listen to him etc Read Less

    • Kate
      to Cyn

      April 14, 2017 at 6:04 am
      Reply

      I found this website thanks to a video of yours being linked, and had to reach out. I watched it with tears running down my […] Read MoreI found this website thanks to a video of yours being linked, and had to reach out. I watched it with tears running down my face. You summed up so eloquently so many thoughts and feelings I have. We are only 3 months into our own autism journey, but I aspire to have the level of grace and compassion that you have. Your love for your son shines through. I'm so glad to have found this, it helps give me hope. Read Less

  • zacandgwen

    April 18, 2014 at 6:00 pm
    Reply

    It's almost as if I am reading about Oliver! I cut Oliver's hair myself as well and I agree that it is definitely life […] Read MoreIt's almost as if I am reading about Oliver! I cut Oliver's hair myself as well and I agree that it is definitely life changing! :) I love this blog! Read Less

    • findingcoopersvoice
      to zacandgwen

      April 21, 2014 at 1:49 pm
      Reply

      Yay! I am so glad you like it. I am pretty honest on this end. Before I started blogging I felt so alone. I was […] Read MoreYay! I am so glad you like it. I am pretty honest on this end. Before I started blogging I felt so alone. I was really struggling to find someone who could understand what I was feeling and going through. And then I started to think maybe I was crazy! And then I 'met' all of these other moms with kiddos like Super Cooper. And it changes my life! Read Less

  • emily hughey quinn

    June 30, 2014 at 1:45 am
    Reply

    Wow, Kate. This blog is absolutely beautiful. Raw, honest insightful and essential. Keep on logging this journey, you brave, amazing mama. I wish you, Cooper […] Read MoreWow, Kate. This blog is absolutely beautiful. Raw, honest insightful and essential. Keep on logging this journey, you brave, amazing mama. I wish you, Cooper and your family all the very best of the bestest. Read Less

    • Thank you lady! You made my night. When I started on this journey with Cooper I found blogs that changed my life. I need to […] Read MoreThank you lady! You made my night. When I started on this journey with Cooper I found blogs that changed my life. I need to read about other kids and parents that got through it. I hope I can do that for other moms as well. Read Less

  • Tara

    July 7, 2014 at 7:05 pm
    Reply

    Im so happy i found this blog! I have 2 sons Ryder is 4 next week and Jackson is 2 in september. Ryder by 18mths, […] Read MoreIm so happy i found this blog! I have 2 sons Ryder is 4 next week and Jackson is 2 in september. Ryder by 18mths, had no words, no pointing, no waving, no nods for yes or no and very inconsistent eye contact. I knew he loved to cuddle and play and would give you periods of eye contact. He just didnt play like other kids. Wouldnt notice other toddlers playing alongside him. Hed look but never truly engage like my friends kids. I was scared and on edge about everything he did. Id watch every movement and try to read into it 1000 different ways. We started Early Intervention with OT and Speech. I knew in my heart it wasnt Autism but scared it was! What a rollercoaster. I just had no answers nor could any therapist put a finger on it. Some sensory issues but none that stood out. Motor planning was a struggle and he had some transition issues. Well at about 2.5 to 3 he became a whole new kid! Answering to his name, speaking understandable words, back and forth play and loved to play with kids! I was overjoyed. He continues speech 1 hour per wk but just a delightful little boy. Now i have 22 mths old Jackson to deal with! Ugh. Again, no words, just started giving high 5s and does like to clap, although that takes time to get him to do! He still wont really give anyone much eye contact or wave. He does make noise all day mostly ahs and ohs but filled with intonations. He is a SENSORY SEEKER! Lucky me! Climbs everything, runs head first ( he has very low muscle tone upper body) headstands on everything, chews on toys and grinds teeth sporadically, digs in sand with hands, loves loves swings but also loves slides. He eats pretty well but some days will taste something then spit it out. He gagged and puked his first dig into the bean bucket! He can do it now but does something funny with his mouth so i know he doesn't totally dig it! Hes fine on his back during changes but just non stop alllll day long. He fits some of the signs but doesnt others so its just a wait and see game with him. He is seeing an OT and a speech therapist. Behaviorally he is pretty good. No tantrums, just appropriate responses to leaving the park or going back into carseat. I know how lucky I am that his issues seem manageable but its still heartbreaking that we are walking this unknown road again. I can only pray his achievements are like Ryders. Read Less

    • findingcoopersvoice
      to Tara

      July 10, 2014 at 1:02 am
      Reply

      Hi there. Ryder sounds SO MUCH like Cooper!! I so get the roller coaster. And the unknown. And the fear. I think us moms with […] Read MoreHi there. Ryder sounds SO MUCH like Cooper!! I so get the roller coaster. And the unknown. And the fear. I think us moms with kids like Ryder and Cooper totally get it. We can all relate. And describing it to other moms is so hard. When I started finding blogs it changed my life. I felt like I wasn't alone. Good luck with Jackson! I am here for you mama! Read Less

  • tara

    July 10, 2014 at 1:15 am
    Reply

    Agreed! My friends don't get why I can't just go on vakay with them and all of our kids! Ummm 2 ot appts […] Read MoreAgreed! My friends don't get why I can't just go on vakay with them and all of our kids! Ummm 2 ot appts per week and 3 speech per week. And my kid is a wrecking ball! Youre right in that they cannot understand a typical day for us dealing with any delays or issues with our kids. My life revolves around doing the most I can right now for my boys. Brushing, joint compressions, upper body work, compression weighted vests, teaching signs, sensory exercises and it goes on! I never knew this could be part of motherhood but i wouldnt trade either for the world. Those faces! But 8pm is awesome time for me! Na nights and mommy time!! Read Less

  • Shelly Marno

    January 24, 2015 at 12:28 am
    Reply

    Stubbled across your blog, and my goodness its like reading my diary (if id ever bothered to write one) lol,,,my 6 year old son is […] Read MoreStubbled across your blog, and my goodness its like reading my diary (if id ever bothered to write one) lol,,,my 6 year old son is nonverbal autistic. He has no words at all, but is never quiet, always making noises. He was born with a severe hearing loss and has bilateral cochlear implants and seemingly now has a good level of hearing. I can't believe the incredible similarities between our boys going by your blogs, I was wondering do u have a Facebook account or an email address, I would love to talk to you some more about our experiences XXX Shelly Read Less

  • slk1217

    June 25, 2015 at 1:21 pm
    Reply

    Hello, my son is autistic also. He started to talk at 7 months but after vaccines he didn't talk until he was 6 years old. […] Read MoreHello, my son is autistic also. He started to talk at 7 months but after vaccines he didn't talk until he was 6 years old. Your son seems to be on his way, YES!!! Way to go Cooper!! & Mom!! What I found that helped was sitting at the computer for at least 6 hours a day with my son on my lap. When he started to talk at 6, he never quit, LOL! They he talked all day. There are so many extremes and it can be exhausting but he talks!! Thanks for your post!! Read Less

    • findingcoopersvoice
      to slk1217

      June 25, 2015 at 3:02 pm
      Reply

      Hi there, what did you do on the computer? Was he watching videos or playing games? I pray Cooper is on his way. Thank you […] Read MoreHi there, what did you do on the computer? Was he watching videos or playing games? I pray Cooper is on his way. Thank you for your comment! I love that your son talks now!! Read Less

  • miriamgwynne

    February 15, 2016 at 10:16 pm
    Reply

    Just a random thought...would you like to connect with each other on facebook? I would love to connect with you more if you would be […] Read MoreJust a random thought...would you like to connect with each other on facebook? I would love to connect with you more if you would be happy for that. I think about you loads! Much love, Miriam Gwynne Read Less

  • Connie

    February 16, 2016 at 6:26 am
    Reply

    It's been close to two years since I left a comment and I cannot believe I haven't kept up with your blog :( my son […] Read MoreIt's been close to two years since I left a comment and I cannot believe I haven't kept up with your blog :( my son who will be 4 in May was just diagnosed with autism. I remember the day I came across your blog I was in tears! thank you for being so open and honest with your journey :) <3 Read Less

  • Lindsay Steward

    February 15, 2017 at 1:24 am
    Reply

    It's been over five years since we worked together at LSS, but I still remember having lunch and taking a coffee break now and then […] Read MoreIt's been over five years since we worked together at LSS, but I still remember having lunch and taking a coffee break now and then with you and talking about life. I think your website is absolutely amazing, so real and candid... and your family is beautiful. I can't stop reading...I'm not sure if I told you, but my only sibling is my younger brother, Michael, who is 28 and on the spectrum, and diagnosed with "Landau Kleffner" syndrome. I would really love to touch base sometime. Also, I just want to say that my brother has definitely been my biggest teacher and without him in my life, I wouldn't be the person i am today. Cliche, but so true. Love ya, Kate! Read Less

  • Laura Kane

    March 13, 2017 at 3:17 pm
    Reply

    Hi, Kate. I've just discovered your blog and I'm busy reading through your past posts. I finally found another child with autism who […] Read MoreHi, Kate. I've just discovered your blog and I'm busy reading through your past posts. I finally found another child with autism who seems almost exactly like my son! My son, Peter, is 7 years old and is completely nonverbal (though never quiet, as you mentioned). He is never still; he is the happiest boy on earth as long as he has his iPad and his lights, sounds, and music; he loves to be tickled and tackled; he is fearful of new places and unexpected sounds; he eats only starchy foods; he uses a Talker (a dedicated communication device). He is also destructive, without being purposefully so, "unmakes" his bed on a daily basis, chews on random objects, and never has a selfish or calculating though. It's a comfort to know that there are other families out there with special children like ours! I am a writer as well and have sent out a few book proposals to publishers. I feel compelled to try and educate the world about autism and its intricacies, and also to help families cope. Take care, and feel free to contact me at the email listed above. Regards, Laura Kane Read Less

  • Brenda

    July 2, 2017 at 11:18 am
    Reply

    Wow! Im in tears My son just gof diagnosed with autism on April 2017 and his only 3 nonverbal, getting therapy 4 days a week […] Read MoreWow! Im in tears My son just gof diagnosed with autism on April 2017 and his only 3 nonverbal, getting therapy 4 days a week his not a violent kid his very calm and shy i could say. He dont like seeing other kids cry it like makes me think is a sensory thing. I dont know how much or what level of autism he is but i feel like his not that autistic? I dont know i am so confused still with his diagnosed and when i ask search i still get no answer. Its hard im pregnant with my 2nd child and im worried. Read Less

  • sarah jane

    August 21, 2017 at 11:00 am
    Reply

    my son conor is 4 and has autism , and i have been following ur blog since i saw ur emotionally breakdown in your […] Read Moremy son conor is 4 and has autism , and i have been following ur blog since i saw ur emotionally breakdown in your car!! I am so glad you have gone down the road of ABA you will not be sorry and soon you will see the benefits, i have being doing this therapy with my son since he is 2& 10 months, although he is still ot talking he is attempting and is toilet trained during the day ! my advice get him into an aba school , put him into as many autism social groups and pay for extra ABA tuition... the more the better ! its working here xx Read Less

  • Charlotte Jones

    September 25, 2017 at 9:18 am
    Reply

    Your site has come as a revelation. Thank you for being so open and honest. I have ASD twins and it has taken me some […] Read MoreYour site has come as a revelation. Thank you for being so open and honest. I have ASD twins and it has taken me some time to come to terms with this. When you say you mourn the loss of the child/children you thought you'd have, that really struck a chord. But I'm over it and moving on. Special needs kids are so amazing in so many ways in how they are and in how they turn you into the best parent for them. And how lucky are we all to live in a time where we can connect and commiserate with and get inspiration from others from all corners of the earth. You're obviously doing a great job, even though it's hard at times. I look forward to following your journey that you share through your blog. Thank you!! Read Less

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About Me
About Me

Hi, I'm Kate. I am the mother to a little boy with severe, nonverbal Autism. This is a glimpse into our heartwarming, sad, scary, funny, loving and secret world. Check out my video tab to hear me ramble about Autism.

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