momtuition

The Things We Don’t Talk About

Posted on: April 16, 2012

Ok… Bear with me because this is tough and this is probably my first time really addressing relationship issues but I know it’s on the minds of many couples parenting a special needs child.

Here goes…

What I haven’t had the guts (Yeah… I’m talking about guts so it’s DEEP) to write about at length, is what raising Kuba did to our relationship (Charlton and I). And recently I’ve been asked why since it’s such an important part of my story.

If I were to believe everything I read – The odds are stacked against us staying together and I can well understand it.  When Kuba was first diagnosed we never had a single argument about what we were going to do. As matter of fact we never really sat down and made any plans per se. I think we were both in panic-mode mode about what to do. We both were online all the time researching, he would talk to people he’s comfortable with, I would talk to people I’m comfortable with and EVERYBODY else. Actually I think Charlton was the one who found a speech therapist on island that we started using. Then about a year or two into it I became “Chief Navigation Officer”.  A role that I took on with probably everything in me then some – And after that the issues weren’t necessarily fast but boy, was some of them furious.

We finally get him into a school that we’re hoping can help him…

Why are we paying separate fees for the same school?

Because that’s their system and we both agreed to it; remember?

 

Homeschooling is now a thought…

He needs to go to school. Home is not for school.

SIDE NOTE: Who would have thought…? We’re now both proponents of homeschooling as an option if it works for the child and family

 

We decided on a shortened school-week – Two days at school and three days at home. Kuba is an only child and socialization is an important part of his therapy – We get a reduced tuition for school.

So you’re telling me we’re paying almost $600 for him to socialize? That’s what you’re telling me?

 

Kuba, because of his sensory issues is extremely selective with his food. No chicken. No meat. No fish – Actually stopped eating fish then he suddenly became allergic to it – I was the one forcing him to eat fish the day we realized this. Just kill me now I thought.  Found out about his allergy to eggs the same way. I think he wanted to kill me at that time. No rice. With the exception of potatoes; no voluntary eating of vegetables… Welcome five hour dinners. No hotdog or hamburger. No sodas… THANK GOD! With the exception of Mac and Cheese no pasta. And the list goes on and on.

I’ve tried so many things to get him to eat other foods. Some have worked and some haven’t.

Charlton’s one and only strategy… Don’t give him anything else. In other words withhold until he eats what I want him to. Please somebody… Help me to deliver this newsflash to him. It! Does! Not! Work! He will go to bed hungry. Plus I’ve been suffering with migraines since childhood so I’m always afraid of him getting headaches.

He now eats oatmeal but that’s because I cooked it every day for weeks and I would just place it on the table long with whatever (something he liked) he was having for breakfast – He wasn’t forced to eat it. He started out just smelling it then he would take a spoonful and let his tongue touch it. Then after a few weeks I started feeding him. It used to take us over an hour to get through a bowl of oatmeal and sometimes he wouldn’t even finish it.  Charlton thought I was “nut-so”. Thought I was wasting time and food – And Kuba has too many options… Yada, yada, yada. So we would be at the table and he would say, “Kuba, eat the oatmeal! You’re not getting anything else to eat this morning!” At this point I’m saying “ini mini miny mo” in my head trying to decide whether I should say something or give him my best actress “IGNORE”. On some days I’ve realized that you have to learn to pick your battles.

The school is now saying that Kuba can’t come to school unless an assistant is coming with him. I could have told you this was going to happen – Saw it coming. And what did you tell them? You handle it.

Honestly, sometimes he makes me so mad with his you-handle-it-attitude.  I don’t want to make all the decisions. SIDE NOTE: I may delete this line because it may be held against me in the future.

At times I have wanted him to handle to the school confrontations. I wanted him to be the one having the in-depth discussions with the teachers, the tutors, the therapists and everyone else who is a part of our life. Then come home and tell me about it. I just wanted to shut-up for a while. SIDE NOTE: I have a funny feeling about what I just said… The “shut-up” portion… Can’t be good…

And to think he would sometimes call me Castro. Don’t raise your eyebrows. It’s a term of endearment – And I know there’s a compliment in there somewhere. The thing is, deep down even when I was stressed out to the max when were faced with certain issues relating to Kuba – And I was getting the too numerous to mention “Oh My God! You again looks”; I still wanted to do it ALL. SIDE NOTE: I think I should make it clear I refuse to settle. I ABSOLUTELY REFUSE TO SETTLE! I think our kids deserve so much more than what they’re currently getting.

So, on one hand I wanted him to step in and take over and on the other I didn’t want to lose that control. He would do something then I would criticize it because I didn’t think it was done right then he would get mad. I tell you… We’ve had our share of Oscar-worthy arguments.

These days we’re making it work because we genuinely love each other and we tell each other that everyday. We kiss all the time. We plan date-nights. Actually this (date-nights) was Charlton’s idea – A clear sign to me that we needed to make time for us. It’s so easy to get caught up with all the therapy, meetings, and the latest this and that that you forget about your partner’s needs and even your own. We also realized that our son would be better off with the two of us together. Not because of him but for him. I think we initially viewed our personal misery as temporary. We kept thinking, “We have to get through this – We’ll sort the other stuff out later.” To some degree I would say it worked for us but everyone knows that eventually things always come out.

We now recognize that we each bring different strengths to the table and we respect that. In hindsight, now I think about it, our problems were not so far off from those so typical to autism itself, difficulty communicating.

If we’re looking for a tutor I get the calls I do the interviews but we talk about it throughout the entire process and sometimes we end up talking about things we wouldn’t have discussed ordinarily.

He knows when to step in and just make the decisions when he sees me getting overwhelmed – And I try not to over-think it and just go with whatever decision he’s made because I know he has our best interest at heart.

He’s the one that takes Kuba riding, to the football field, let him climb trees (I just couldn’t watch this) and all those other things that I wasn’t putting any real importance on because I had this “militant mentality” (By the way I just made that up but it’s the only way I could describe how I felt back then) about therapy and I had to see it in everything. I have to tell myself that I can’t make him parent like I do and there’s value in his way of doing things as well. SIDE NOTE: I guess he was probably right. Looking back, my behavior may have come off a bit “Castro-esque”.

What advice would I give?

Try to even each other out. You know; compensate for each other’s weaknesses. Ain’t no bed of roses… Don’t get me wrong at all. As Kuba gets older the issues have changed. Plus you’re alive… You’re not dead, so there will always be times when you’re at odds about how to deal with a situation – But what I think will make the difference is both of you remembering not to give up on making your relationship work and that it’s worth whatever effort you can give to keep trying.

We’ve had so many highs but there have been lows too. At the end of the day though I wouldn’t change a single thing; not even my nickname “Castro” :).

====

My name is Salma Crump and I’m the mother of Kuba, a nine year old boy who was diagnosed with autism at 3 – I’m a blogger, see what else I’ve said here: www.momtuition.wordpress.com  and I’m co-founder of the Special Needs Education lobby group ABILITY. April is Autism Awareness Month and this is the third of a five-part feature I will be writing each week which will focus on my experiences raising a child with Autism.

Your feedback on each article in the series will determine what I write about for the next. If you have a story to share, any words of advice to add or questions to ask please do so by sending an email to: salma.crump@gmail.com or the editor at: editor@antiguaobserver.com

NOTE: This is the unedited version of the article which appeared in today’s edition of The Daily Observer

 

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5 Responses to "The Things We Don’t Talk About"

Don’t worry, that’s probably a “man thing”…letting us deal with “people”. Like why do I have to make my doctor’s appointments, the kids and still yours. Then you don’t like the dates/times I choose, so I have to change it. And in trying not to be bitchy, I do. Then eventually I say, this is so not worth it…make your own damn appointment. But those are the days when I’m in a pissy mood. When I’m in a good mood, it’s all good.

So my point is this: Don’t be too hard on yourself. Keep on following your momtuition!

LOL – Myra. So true… 🙂

You are a brave and strong woman, keep it up. I am sure you are touching lives.

I am so proud of you and the way your strength and determination has caused you to be a voice for others and to wake up people in our society who are sleeping on very important issues. I cannot say that I know what you are going through because only you and people in your situation know. However, I understand your sentiments. In my professional years I have seen quite a lot of different cases and how badly some of them are handled because people are scared or allow their fear to take control. I applaud you girl because I know it cannot be easy. You are really trying to make a difference. Keep up the good work and just know that I am behind you 200% and praying for you too.

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