Mafe Maria: Personal stories by autism parent mentor, Maria Stultz

The Journey Ahead

You can’t imagine how many times I’ve sat down to write this first post during all these weeks of silence. Some times I’ve failed because there’s so much to tell. Other times I’ve failed because I’m in the wrong mood to write it. The rest of the times I’ve failed because I’m afraid of labeling Joaquin with a single word that most people don’t really understand… A word that every parent I know fears and worries about… A word so powerful, it can suck the air from your lungs and break your heart and body in two. That is exactly what I felt when I first laid it on my child.

And after all these weeks I’m okay with Joaquin being “this”, but I don’t want people to think of him as just “that”, because there’s so much terror and negative thinking surrounding this label, and Joaquin is so much more than a single–word label. And so, although these past weeks have been extremely intense for me, packed with the highest highs and the deepest lows I’ve ever experienced; full of personal discovery, change, and a total overhaul of my life and ambitions; I’ve been afraid to write and share all of this with the world, and open this new window into our life with all its new joys and fears, and the very personal journey that each of us three has started to experience since the day we learned. But the thing is, this is our new life. We can’t really hide it.

This week we’ll be going for our first appointment to try to have Joaquin formally diagnosed by professionals, but by now it is very clear to Joey and I that our sweet and perfect little boy falls somewhere in the Autism spectrum. There: I said it… But as I’ve learned lately, ASD is not a death sentence. At least it is not for Joaquin, nor it is for me.

So for now I’ll save you the full tale of what it feels like to discover that your child is not like all other children. For now, I’ll save you my ongoing recount of what it feels like to be the mother of a special child. Because, for the sake of our sanity and the recovery of our little angel, we’ve had to move on from that point. And I still thank every day for the miracle it was to find the solution on the same day that the problem became apparent. Because otherwise, who knows how long I would’ve stayed in the miserable state of depression you feel when total uncertainty replaces all the hopes and dreams you had for your own child.

The therapy program I found for Joaquin is very different than what I understand most people pursue for their autistic children. It is home–based, performed and directed by the parent. It follows the child without judgment of his atypical behaviors. It attempts to join the child in his world, in order to make a connection he will trust and motivate him to learn about our world and maybe come and join us. It doesn’t suppress symptoms, rather, it attempts to fix the underlying cause of the child’s challenge. It allows and requires you to enjoy, respect, and embrace who your child is right now. It requires an attitude of acceptance and unconditional love most of us never experience in our lifetime. It requires a change in our belief system. It requires self-acceptance, and inner happiness. It begs for me to finally be present and undistracted.

Most of my life I’ve lived in the past or the future. Nostalgic of past lives, or compulsively planning mentally my next hour, day, week, and years… Lately, the chatter in my brain had gotten louder. The little voice attacked many times a day. I had it all, but my hopes and expectations didn’t let me enjoy life fully. Lately I felt old, I called myself old. And I was exhausting myself.

I believe I’m very different right now. Hopefully not just as a temporary change while I help Joaquin overcome his challenges. I really hope this sticks. I’ve started to discover the power of being present. Joaquin is responding beautifully to all of this, and so am I. And while the journey ahead will take some time, there is no doubt in my mind that my son will grow up to be nothing less than I expected and hoped for him. He is intelligent, loving, affectionate, enthusiastic, happy, and full of energy. He just needs more care and attention than a typical child does. He needs a level of dedication I’ve twice declared I thought I wasn’t able to give. And I was wrong.

On a particular low point, at a time when I feared Joaquin suffered from something much more difficult and physical than I think he does, I threw myself on the floor and prayed like I never have… I asked for my child to be happy and at peace in whatever state he is and will be in the future. I asked to be happy for him. To be at peace… I asked for the tools and support I’ll need to get through each mile of this road still so uncertain. For Joaquin to know that we love him, and to be able to express his love for us.

So don’t feel sorry for us. We’re fine… I’m happy (increasingly, most of the days). And now, I can finally tell you more about this very interesting journey I’m starting to enjoy…

Before I finish this post, I wanted to share something I found very sweet and heart–warming. It’s the dedication of “Son Rise: The Miracle Continues”, an amazing book written by Barry Neil Kaufman, co–founder with his wife of the program we’re currently following to help Joaquin (I can’t wait to meet these very special people when I visit their institute in a few weeks). It says:

To all the special children—
who too often have been cast aside,
your lives viewed as tragic events.

To all the special children—
who gave us opportunities to find
the most loving and humane parts of ourselves.

To all the special children—
this book celebrates your wonder,
your individuality, your magnificence.

To all the special children—
may God give us all the wisdom
to see how truly perfect you are.

Truly perfect, indeed.

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  1. On , Devra wrote:

    ((hugs)) First, you are a strong and brave mother and I hope all goes well for you. Second (and please don’t take this the wrong way): oh, is that all? I was afraid someone had died or you were getting divorced or foreclosed or something terrible. While I understand that diagnosing Joaquin is difficult — that he’s not some box version of normal — Autism Spectrum Disorders are so common now that there should be no shame on your part about this. Yes, it will be more… deliberate raising your son. And there will likely be many moment you want to scream or cry til you’re empty or simply give up. But you will have typical mommy moments too, of love and happiness and joy watching your beloved offspring be in his happy place. The world is not over, darling, you all have your whole lives ahead of you. I wish you luck in finding a good therapist/program. I have a friend with two sons on different spots on the Spectrum and she said finding that was a boon.

  2. On , Ivan wrote:

    Prima, there are some spectacular people teaching things and helping others understand the issues of the mind. Yo me enamoré del tema hace unos meses cuando conocí al autor Oliver Sacks.

  3. On , Liliana Chacon-Menay wrote:

    Mi mafesita,
    Te escribo con mas detenimiento esta noche. Pero por ahora queria mandarte un abrazo. Eso es todo -un abrazo.

  4. On , KSR wrote:

    You ROCK!!!;-)
    Remember, we are only ever guaranteed NOW….of course, we have to be mindful of what lies ahead, and fortify ourselves with lessons from the past….but NOW is the only REAL time……No matter where Joaquin falls on the ADS spectrum, you are blessed by being aware of NOW. NOW will bring the full array of ups/downs, victories/defeats, joys/sorrows, ……and you have to embrace each of them and take strength in what they bring you. Thankfully, you and Joey are looking at this an opportunity to be the best parents you can be and to help Joaquin be the best he can be——
    Own the fears and talk to others who are on the journey ahead of you and talk to each other……Own the disappointment that life isn’t exactly as planned…..Own the joy of discovering what lies ahead in unchartered territory…..Own the optimism for the power you have to make the road a little easier for a very special little prince…….own the love of family unity……own the absolute and unconditional devotion of a son in whatever way he chooses to show you……own the love and support from friends and family….Un ABRAZOTE!

  5. On , Maria wrote:

    Ah, ladies… Thank you so much for your words… You really touched me.

    Devra, you’re totally right. I didn’t take your comment in a bad way at all. In fact, it’s one of the things I’ve been discussing with Joey in one of our many long nightly talks… The challenge that was thrown at us is a hard one, but it is very workable. I feel that “somebody” had mercy on us and sent us something that we could handle.

    Joaquin’s condition was very sneaky. All the signs have always been there, but it’s only until recently that the symptoms have gotten visible enough to make you wonder. So I feel that we caught this as quickly as we could have, and he’s always been (and still is) very connected to us. Severe encapsulation, a terminal disease, and many other conditions are much worse, and I am totally aware of how lucky we are within our circumstances.

    Kim, thank you, thank you!
    Just the other day I was telling Joey… One time early on, while I was going through the anger / “I don’t deserve this” phase, I was upset thinking that not only had I missed the birth of my son (because I was so upset about having to have a c-section, they had to drug me bad and I was completely out of it), but now I also had to miss his childhood. And lately I realized that in fact this whole thing is making me be so much more aware of every single thing about Joaquin.

    Each smile he gives me, each belly laugh, each new word, new accomplishment, new day, I see it so more vividly, I celebrate it with a lot more awe and joy. I now listen and observe him with so much more attention, there’s just no way I’m missing anything. The awareness of his challenges, actually makes me enjoy everything he does, makes me more patient, makes me become the mother that I once thought I wanted to be.

    Ivanchi, gracias primo. Voy a chequear tu autor a ver si tiene algun mensaje para mi.

    Lili, thank you for that hug amiga. I know you’re there with me.

  6. On , emeeme wrote:

    Me tenías preocupada.
    Desde que dijiste en flickr que algo pasaba, y ya no supimos mas, he pensado mucho en tí. Sobre todo porque era algo acerca de tu niño.
    Mucho ánimo. Ahora no es como antes. Estamos muy preparados, y todo se supera, porque está muy estudiado.
    Estoy segura además de que vosotros lo hareis muy bien. Joaquín tiene los mejores padres.
    Será duro, y teneis mucho trabajo por delante, pero ya veras como todo va bien.
    Muchisimos besos y mucha fuerza para esto.


  7. On , june wrote:

    I have not commented before but have followed you for a long time. I hope everything goes well at the evaluation. My brother is autistic and is on the low end of the spectrum (he does not talk, and needs 24/7 care). I can only imagine what it feels like to be a parent of an autistic child; I see the toll it has taken on my parents. I am also dealing with delayed development with my own son. Luckily you discovered it early and you have a lot more resources than parents in generations past. If you have not yet heard of this, this is a good book: “Engaging Autism: Using the Floortime Approach to Help Children Relate, Communicate, and Think” which focuses on play therapy that you can do at home. Good luck.

  8. On , Maria wrote:

    Gracias mujer. El reto es grande (no el mas terrible porque Joaquin es verbal y tiene una relacion muy estrecha con nosotros), pero hasta ahora, una vez cambie mi perspectiva (por supuesto gracias a la filosofia de la terapia que encontre) la cosa increiblemente no es dura. De verdad que esto de vivir en el presente sin juicios ni preocupaciones, se lo recomiendo a todo el mundo. Hace tu vida simple y bella, y te gozas cada dia al maximo.

    Por supuesto parte de la belleza es que estoy en esta isla perfecta (mi casa) no veo a nadie, ni tengo que lidiar con las presiones sociales o demas que a veces te pueden desequilibrar. Pero realmente me doy mas credito que eso: Estoy segura que con mi nueva actitud, voy a poder con el mundo cuando no me sea amigable.

    It’s very nice to meet you!… Thank you for your message.
    I just read a few of the posts in your blog regarding your brother and how it affected your life growing up. Also read a little about your son. I wanted to know more about you and them before I responded…

    I’m so sorry that it was so hard for your parents and you and your other brother. Back at that time, the prognosis for all cases was brutal. Professionals didn’t know enough and casted self-fulfilling prophecies on these special children.

    The program I found was created by a couple with a completely encapsulated (autistic) little boy in the early 70s. Professionals told them to institutionalize him and FORGET about him. But they didn’t believe that. They had previously gone through a different personal journey and decided to do something different. They worked with their child for 3 years, and little by little got him out of his shell. Today, this person is the CEO of their autism institute. You could never tell he was once severely autistic. And since then, the story has been repeated over and over with not only autistic children but other kinds of special children. They don’t claim to “cure” everybody (I realize this word sounds offensive to people with certain feelings about autism), but when you understand how they work, you realize that there really is hope for everybody.

    When I first found them the skeptic in me asked “Are they for real?”… I watched many of the testimonials of current parents of autistic kids going through the program. They talk about the amazing transformations on each of these children. Then I dug deeper into the program’s principles (the video I linked to in my post) and understood their method. I have to tell you, it sounds… and FEELS so completely right.

    They have helped “children” as old as 50 years old. I’m not telling you this to infer that you guys should check them out for your brother. Only to say that even somebody his age could be helped. I don’t say this to throw seeds of guilt again on your life. Really, I don’t. I just know that this is so right, I try to pass the information to anybody who may need it, just in case. I know the impact that a diagnosis like this has in a family, and GUILT is the very first feeling I experienced. So, please don’t take any suggestion of guilt from me.

    I’m a little hesitant to tell you more because I really don’t want to sound like a preacher who hasn’t been requested. I’m just so inspired by this program because I see the HUGE effect it has brought to my life (even without my child). It also has immediately stopped the regression of skills Joaquin was starting to experience, and with my dedicated attention right now, I see that he’s back on track on (and in fact, speeding up) all his language skills, and I have no doubt that this will help him with his social challenges.

    Perhaps even more than the recovery stories, the thing that inspired me so much about this journey was to see the attitude of the mothers who are currently practicing the program. They look strong. Happy. Confident. Light years ahead from simply “coping”. I wanted to be those women. Wanted to feel that confidence and control — That horrible feeling you get as a parent when you realize something is not right with your child is the worst possible thing I’ve ever experienced. This is perhaps why I’m telling you all this… To say I feel for your mother — how much she suffered and still does… And I feel for you if you’re currently experiencing feelings of fear for your son.

    I know these people help children and adults from all kinds of special conditions (not just autism). So, I send this your way just in case. If at some point you feel that what you’re doing with Sam is not helping enough, perhaps check them out… Of course in addition to anything else that you know is helping.

    Thank you for the book recommendation. I don’t know enough about floortime. Only that it is in principle consistent with this program. I understand that it is relationship–based (not behavioral) and it also follows the child. The thing we’re doing, I believe, goes further on that direction. But floortime therapy may be something else we pursue along with it.

    All my best to you… I hope you don’t take anything negative into your life from my very long reply.

  9. On , Marla wrote:

    Maria – I love you lady. I know you’re on an amazing journey, one that you never expected. But you and Joey together have the courage to wrestle every odd, oragami style, taking things that seem so impossible and, with careful care and attention to detail, creating beauty. You do it in every way. Joaquin is very blessed.

  10. On , Ria wrote:

    Hi Maria,
    I just read your post. I so love the motto of the book, I read it every time I need the inspiration and hope it gives. Maybe our sons choose us, because they knew we would be there for them, unconditionally. I’ve always been so glad this little soul wanted to be with us. And I never lost touch of Pelle’s soul, because it shines through his autism. I sense you feel the same about Joaquin.
    I’ve been experimenting with interactive play with Pelle now, and it’s already working out so good! He’s starting to fantasize right now, a thing he’s never done before. School just told me this morning he can stay in his own class and go to the second level (for 5 years old toddlers) after summer. Playing with him is easier and nicer than ever before, because I just follow his lead, and than my responses just bubble up in me. It’s like we’re dancing.
    So that’s the gift they give us. Helping us being authentic and revitalize the child in ourselves. And for me, that child has been neglected far to long. Playing with Pelle, it comes alive again. Embracing him and his mother. And that feels so good.
    I expect you will be so revitalized and happy after enrolling in the Sun-rise program. Like never before.
    I know you have all it takes for him.
    A big hug from your Dutch friend, Ria

  11. On , Vivienne wrote:

    Mafe – I commented on your later post, but just wanted to say that I remember the movie about this family, and it was so inspiring. I am so glad you’ve found something that works for your family. I wish for you and Joaquin and Joey strength and hope and joy for your journey.

  12. On , Maria wrote:

    Miss Marla — We already talked ;) Thank you always!

    Ria — Thank you! I feel exactly like you, and I am so happy to hear that you’re also seeing positive change in Pelle. Too bad we’re so far away and can’t volunteer to help on each other’s program. I’d love to meet you, Mark and Pelle some day. Maybe one day it will happen… In the meantime, I thank for this glorious internet that gave us the chance to find each other. I hope you’ll share more of your journey with Pelle, if not publicly, at least privately with me. It will be great to cheer each other and celebrate our children’s victories, and share the low moments. I know you were already standing in a much better personal place than me (i.e. accepting motherhood fully), so I have no doubt that your stories will be inspiring to me.

    Vivienne — When I first heard about this program I remembered having once seen something like a movie or documentary about a mother reaching her autistic daughter by imitating her behavior. I’m guessing it wasn’t the Kaufman’s story — which I read recently on the book. But I’ll be watching the movie this Monday… I’m currently reading the story of the program they run to help a 6-year-old Mexican little boy. It is so beautiful! More so, knowing that since then there have come many other real stories like these.

    Thank you for all your wishes for us. I take them :)

  13. On , Diana Munoz wrote:

    Querida Mafe,

    Hasta ahora leo todo este episodio… Y empecé leyendo, digamos, preocupada… Y me sentí profundamente conmovida aún sin haber llegado al core del asunto, me pareció bonito porque sentí que eso que indudablemente escribió desde el corazón, me lo transmitió totalmente, y ya estaba llorando como le digo antes de entender qué pasaba…

    También logró transmitirme su sosiego aceptando esta situación y por eso, con todo y que me sacó la lágrima, me dejó contenta, de su sabiduría, y también de la perfección de las cosas… Es decir, comparto eso que dijo y que creo y es que Dios a uno le pone cosas con las que uno puede lidiar, nunca ni más, ni menos…

    La quiero

  14. On , Ana wrote:

    Soy Madre de un niño Super especial, muy inteligente que tiene 8 años… Hace 4 fue diagnosticado por un especialista con Asperger. Pero yo … ya había intuido que algo no andaba bien. Los pediatras me sugerían que los niños se demoraban en el desarrollo … y mi intuición me gritaba que necesitaba encontrar que estaba pasando y pronto. Investigue, y mientras obtenía un diagnostico, comencé a trabajar con mi hijo (Me volví una experta en la materia, busque terapias de estimulación, de lenguaje, cambie la dieta…en fin). Como madre de este ser tan especial te puedo decir que he aprendido a ver el mundo a través de sus ojos. Es devastador cuando el especialista le dice a uno que tu hijo ve y siente el mundo de una manera diferente. Pero, es increíblemente gratificante verlo conquistar… superarse. (Los niños son muy fuertes y cuando se diagnostica temprano ellos tienen tiempo de desarrollarse y encontrar la forma para subsanar lo que les hace falta). Ya no veo la vida de la misma forma. . Ha requerido de mi parte consagración, energía, paciencia, algo de sacrificio y toneladas de amor. Mi esposo ha cambiado también (llegar a este punto requirió tiempo, comunicación y mucha información) ya que la demanda de tiempo es enorme y poder compaginar las terapias con la vida cotidiana requiere de trabajar en equipo. No solo en casa, también afuera… Tu eres el centro de información y operaciones, la biblioteca a la que se remitirán (Lleva record de todo…desde la prescripción mas simple hasta del ultimo dibujo),..trata que el medico, los terapeutas y todo aquel que tenga que ver con tu hijo trabajen en equipo contigo y todos estén en la misma pagina. Confía en tus instintos… aprenderás que lo que le sirve a unos a otros no….ten la mente abierta y encontraras lo que funciona para tu hijo. Espero esto te sirva ….De parte de una madre con un hijo especial para otra madre de un hijo Super especial..un abrazo desde Texas.

  15. On , Maria wrote:

    Hola Ana. Mil gracias por tu abrazo y el mensaje tan lindo que me dejaste.

    Me encanta saber que cuatro años despues, tu actitud positiva sigue ferrea. Yo, gracias al programa terapeutico que encontre (no el tipico de ABA que hace la mayoria de gente), no tuve que perder tiempo con depresiones ni vacilamientos. Inmediatamente entendi que esto sucedio en mi vida por una muy buena razon y es una oportunidad de cambio increible. Quien mejor que tu hijo para cambiarte?…

    Mi camino acaba de comenzar. Hay dias bellos, y dias no tanto. Pero poco a poco voy trabajando en mi misma para que los dias menos bellos no me afecten tanto ni me roben la energia que necesito para ayudar a mi enano. Ahi vamos… Aprendiendo un poco cada dia.

    Te mando un abrazo a ti tambien. Gracias de nuevo por parar por aqui y escribirme :)

  16. On , Ana wrote:

    Hola, espero estén todos bien…quería compartir esta dirección…por que me ha resultado muy útil….en my journey.
    Un abrazo….