The Quiet Struggle of Raising a Child with Special Needs

Here’s my story.

Every Child is Special

photo-1470116109808-c71d8bd6f4a7I always knew my child was special. I have videos of him reading Brown Bear at the age of 6 months. OK, he wasn’t really reading but he showed great interest in the book and that made this momma bear really proud. I would record and take pictures of every single milestone no matter how small it was. Yes, I was that mother.

He was always very distant from me. He never liked to cuddle and he wouldn’t initiate a cuddle either. He wouldn’t sleep in my arms and in fact, people would always tell me how lucky I was when he was a baby. How I could just lay him anywhere and he would fall asleep. Since he didn’t like to be held I felt relieved because the time to go back to work had come. I left him in the care of someone else while I was at work and they described him as the perfect baby. He would sleep, eat, play and never cried or asked to be held.

Then I noticed sensory troubles. He wouldn’t look up when he’d be outside and it seemed as if the brightness of the day would blind him. Crowded or noisy places would deafen him. Mealtimes became harder and harder as he would sometimes refuse to eat certain food because of their shape, color, or texture, sometimes inflicting a gag reflex just by looking or smelling it. I just thought I had a picky eater. He seldom made eye contact and wouldn’t respond to his name.

Playdates slowly disappeared because I noticed he didn’t share an interest in other children. He would isolate himself and it was almost as if he couldn’t communicate with them.When he speaks he has a high pitch and each phrase seems like a question. He repeats phrases over and over again and will say something completely irrelevant to whatever was initially said, making friendships difficult.

Terrible Two’s

anger-1462088_1280

He was 2 years old and still could not speak in sentences or even three-word phrases. I could tell he wanted to say something but when he couldn’t verbally express it, he would scream. If it he didn’t scream, he would stomp. If he didn’t stomp, he would bang his head. It was heartbreaking to not be able to understand him and see the frustration hidden behind the meltdowns. I tried every approach, to guess, to distract, or to join him in his fight. I can’t hold him because that only makes it worst so I wait, making sure he doesn’t hurt himself. It is easier to control the environment when at home, but in public it’s a whole different story.

We have slowly reduced our public outings because we notice it can be overwhelming on him. We are that family that I’m sure you all have judged. We are the family where the “bratty child” is screaming and kicking and you think it’s because of a toy, or because he didn’t get his way. You misinterpret arms flying and us trying to prevent him from banging his head to physical violence. You are thinking those parents obviously suck at raising their disobedient child. You stare and sometimes blurt the most unnecessary and disappointing words that make it more difficult. In those moments I wish I had super powers to immediately press the disengage button, make us invisible, create a soundproof shield around us but no, we are there “ruining” your day, because of our “lack of parenting.”

I have slowly learned to stop caring about the people around us. I don’t apologize for something that is out my control. We cannot live inside our home forever for other’s consideration. If we leave a public place, it’s because the surrounding is obviously affecting our child. Sometimes we have no idea what triggers it, so while you think it’s because we didn’t buy him a toy, it can be because he heard, saw something that triggered something inside of him that made him uncomfortable and screaming is the only way to overpower that.

The Waiting Game

hourglass-620397_1920

We succumbed to the “wait it out” game, and we are still waiting. I expressed my concerns to our pediatrician and was told to wait and see how it goes, that it’s just a phase, that he’ll grow out of it, let’s do a vision test or a hearing test, here’s a number, call that number that will then give you another number and then after we hear your whole story, we’ll give you yet another number. This is pretty much how it’s been for the last 2 years. It was not until last January that I got the approval for an evaluation to be done at Stanford to determine if he falls under spectrum disorder. Well, our appointment isn’t until November. We have been waiting and waiting. In the meantime, he goes to two speech therapists and now to school where they are aware of his special needs, even though he doesn’t have an actual diagnosis.

I’m aware that nothing will magically happen after we get an official diagnosis. It’s not going to “cure” anything, but at least we’ll have a gateway to many resources to make his life less complicated.

It’s taken a toll on all of us. All the effort, physically and emotionally to care for our special child while also tending to our youngest is draining. I have felt anger, sadness, anxiety, isolation and then feel terribly wrong for having these feelings, so then comes the guilt.

Relationships

office-620822_1920

I have very few friends that have actually seen both sides of the coin. They are my support group, but there are times when I just don’t want to talk to anybody in fear that one little thing will make me burst into tears.

My family… my family is full of drama. I have been the mediator for so long and I’m dealing with my own troubles that listening to theirs only adds to the weight I’m carrying. I grew up with a sister who has Cerebral Palsy and I know my mother knows what I’m going through, but I still keep quiet. When I visit them, I become my mother’s break and I’m left with my sister of special needs, a teenager, my child of special needs and my one-year-old. Am I to blame for not wanting to make the painstaking 8-hour drive to stay home and add on to my responsibility?

I try to be up to date on social media, but I just don’t have the time. I’d rather crochet as it has served to be a form of meditation.

My marriage is in danger. Yes, this can affect even the happiest of couples. I don’t love my husband any less than when I married him, but raising a child with special needs has tested many aspects of our relationship. Our son doesn’t like for us to have a conversation that doesn’t include him. He will say “Mommy, don’t talk to daddy” then takes him away and I miss the opportunity of any dialogue that might save me from dwindling. I am home for most of the day with both of my sons, while my husband goes to work. When he gets home I leave for work for a couple of hours, but I don’t necessarily catch a breath. I leave one child with special needs to go and be with another one. I am a tutor and work at a learning center for people with learning differences. I’ve tried to work from home but the moment I open my computer or talk on the phone it’s time I’m not dedicating to him and he will let me know, not always quietly.

Or there’s the feeling when I feel so much love that it hurts to not be able to hug him, or kiss him. It completely destroys me to not feel his love for me in this way.

The guilt of catching a breath

crying-1299426_1280

My son requires around the clock attention. He doesn’t play well by himself, he doesn’t sit in front of a television screen. When we absolutely need to do something and want to avoid a meltdown, we give him the iPad, then automatically feel guilty about it. Every time I do something outside of the Handy Dandy Perfect Parent Handbook, I feel guilty.

So while you might say, “but he looks so normal.” Well, that type of thing was what made me think, am I overanalyzing everything? Is it all in my head? If all kids are like this, why am I the only one complaining how difficult it is? Sometimes he’s fine, so all those other times is it because I have less patience? or the worst of them all, that feeling that I’m a terrible unfit mother and that that title shouldn’t have been given to me, because I surely messed up somewhere.

So there it is, my not-so-quiet struggle anymore.

 

 

 

Advertisements

Crochet Bralette/Summer Top

I stayed up all night again hooking since my two spirited boys and work keep me very busy during the day.

Here’s the updated and finished product. You can see the beginning process here.

I changed my mind on the bottom part and decided on a fan shell stitch instead of the square motifs. Here are the pictures.

18678598195_d4e07a24cc_o

I made the center part higher so it can give the top a more feminine look, at least I think it does. I noticed it on a bathing suit top I had. I worked dc and tr on the center stitches.

18652277706_ee6639625e_o

18680117481_a8d41901cd_oAnd here’s what it looks like once it’s on.

18678523055_9d28e8f0b1_o

Crocheting… it’s bringing sexy back!

WIP: Crochet Bralette/Summer Top

Summer makes me think of sun, beach, tanning, relaxing, and… crocheting! Okay, anytime of the year makes me think of crocheting.

I’m also not in the mood to crochet blankets, scarves or beanies, but there are many things I can crochet during the summer. Take this project, for example, it’s a crocheter’s must. I’ve been meaning to finally graduate to crocheting clothes.

I like to believe I can crochet anything so I’m putting it to the ultimate test. I’m making a crochet top, one of those bralettes we see at music festivals. It’s very bohemian, very popular and in fashion right now. In fact, I’m seeing crochet tops, shawls, vests, borders, and shorts all over. I find myself staring every time someone has on anything crochet… I know, I’m a total perv. What can I say, yarn is my weakness.

Enough chatter, here’s my WIP

18646829312_1f5e99b7c9_o (1)To make the cups, I made a chain from the bottom of the breast to where the nipple would be, this one is about 20ch. I hdc across and instead of turning, I added 3hdc to the beginning ch. and worked hdc in each stitch until I got to the end. I turned and went back, hdc until the end again, making sure I increased at the top. This makes the “cup.” I made two “triangles.”

I connected the bottom and added a border. I got the pattern (#22) from this book:

18651530475_3e08f100b3_oI’m trying to use patterns from my crochet book collection. I love to wing it and make up my own patterns, but sometimes I don’t have the time.

18653771751_659450d34c_o (1)

18465334119_d1f26356d7_o

18646825482_414bd06e96_o

Here’s the end result: Looks so pretty already. I could leave it like that and make a bikini top, but I want to add more.18028840794_1e7d488378_o

For the bottom, I’m going to connect square motifs (#61 Isabella Square ) from this book:

18028835914_217c0d50a6_o

This is the square, I love the lacy doily look.

18625172276_e83bcd5009_o

And that’s it so far. I’ll post more as I go.

CAL- Mystery Afghan Challenge Week 2

I was a little hesitant, to be honest, when I saw that week 1 was a simple granny square. The advantage of starting late is that I was able to see the next clue, and we do some funky stuff to the granny square no longer making it appear blah.

Week 2 clue pattern can be found here.

CAL Week 2 Granny Square

and here are all 20 of them 🙂

CAL Week 2 Squares

CAL Week 2 Cross in 20 Squares

and wait until you see week #3!

CAL- Mystery Afghan Challenge Week 1

The reason why I went back to Facebook, was because I missed all of the challenges and projects shared on the Crochet Crowd page.

The moment they announced they’d be having a Crochet-Along Mystery Afghan Challenge, I knew I’d be doing it. The only problem was that life got in the way. One thing led to another and the challenge started and I stayed behind, BUT here I am, only 2 weeks behind…better late than never…

Here are my color choices:

CAL Color Choices copy

Clue pattern for Week 1 can be found here.

I used the blue as my main color and clue #1 led me to this… a granny square…

CAL Week 1 Granny Square

 

… 20 of them!

CAL Week 1 Granny Squares

 

Now on to clue #2…

Crochet Slouch Beanie

photo

I just wanted to show off today’s head accessory 🙂

Sorry there’s no pattern. I was testing out a chunky yarn and I just went with it. I get so many compliments on this hat, I plan on making more to put on my future Etsy page… I know, I’ve been saying that forever. Trust me, it’s worth the wait.

A través de mis ojos

Es algo difícil, algo que me expone y que abre las puertas de mi vida y de mi corazón.

Podría callarlo, podría imaginar y hacer creer que nada ocurre. Podría tragarme las lágrimas después de un día largo. Pero lo mejor es hablar de ello. Hablar de porque mi paciencia trasciende cualquier obstáculo. De porque el amor de madre viene con retos y bendiciones.

Dios me ha dado el desafío de tener un hijo con síntomas de autismo. No me gusta ponerle una etiqueta hasta no evaluar bien la situación, pero tengo que hablar de ello. Tengo que hablar de lo difícil que han sido estos últimos años.

Duele mi corazón pero no por las razones que piensan. Me duele porque yo soy una de las pocas personas que al verlo, lo entiendo. Porque veo su inteligencia y su determinación, mientras otros ven un niño malcriado. Porque yo realmente lo veo como es. Que puedo decir yo… es mi hijo. Lo amo con toda mi alma. Por eso confíen en mi cuando les digo quien es él realmente.

La semana pasada al sentarme con el director de donde trabajo, no pude contener las lágrimas. Sus palabras de motivación me han ayudado tanto. Dios me eligió a mi, yo que me dedico a esto y tengo tanto apoyo profesional de mis colegas. Pero no deja de ser difícil. Sobre todo soy un ser humano.

untitledM

No pido su lástima pero si les pido y les recomiendo algo por favor,

  • Les pido que no cuestionen, juzguen, o critiquen mi manera de “disciplinar” a mi hijo. No… esto no es algo que se le quita con nalgadas.
  • No es porque está chiqueado o mimado.
  • No, no es sangrón, solo porque no te ve a los ojos cuando le hablas.
  • No ayuda nada que me digan que parece un niño normal, o que se le quitará.
  • No ayuda que me digan que sus hijos tienen lo mismo y después oír sus “soluciones”
  • No, no es mi culpa por haberlo vacunado.
  • Sí, es diferente a su hermanito, porque todos somos diferentes. No ayuda a nadie que lo comparen.
  • No podemos evitar escenas en lugares públicos, así como no podemos permanecer todo una vida dentro de casa solo para no incomodar a los demás. Créeme que es más difícil para él.
  • Sí, yo sé que repite mucho las cosas y que a veces no tiene sentido lo que dice, para ti no, pero para él está perfectamente claro.
  • No, hablándole más fuerte no hará que se calme.
  • Sí, habrá momentos que parece que se está haciendo daño a él mismo pero es más fuerte el dolor que no puede contener.
  • Él entiende más de lo que te imaginas y entiende cuando están hablando de él.
  • Sí, tiene dificultad en cuestión de procesamiento sensorial así que habrá momentos en los cuales tenemos que irnos sin dar aviso.
  • Discúlpenme si regresar sus mensajes y llamadas no es mi prioridad

Habrá más estudios para determinar que recursos nos pueden ofrecer. Mientras tanto respiramos, reímos, gozamos, amamos, lloramos, nos abrazamos y seguimos adelante.

Gracias a todos de antemano por su comprensión y su apoyo.