Category Archives: Special Needs

The Good Mom

What is a good mom? All I know is that I am told that I am one every day. By friends. By Facebook admirers. By co-workers. You see, a lot of these people think that what I go through on a daily basis is too much for most people to take. I guess I tend to agree. My problem with the sentiment, is that they think I am a “good” mom because I don’t complain. They don’t hear the voices in my head of regret, of worry, of resentment. I try to tell them about the sleepless nights, the days where my kids eat nothing but McDonald’s and most never see the state of my house. They see snippets, pictures posted on social sites and blogs about my baking triumphs, or something extraordinary that one of my children did that day.

I have triumphs. My children are extraordinary. I am a good mom. I am so far from perfect. I am probably about as perfect as you are. I have daily battles with myself, with my home, with my children. I think that part of my problem is that I’m not as vocal about the imperfections of our lives. Yes, I know, my blog is about two Special Needs boys, of course they are imperfect. I think my new mission should be to show the good and the bad. The ugly that comes before the reward. To me, that’s what makes a good mom. Honesty.

I’m even thinking of changing my blog name to “The Good Mom” or “The Good Woman.” I want to show women and mothers out there that the “good” ones are the ones that fail. The “good” ones are the ones that can say, “I fucked up, and here’s how I’m going to fix it.” The “good” ones know how to ask for help. I spent a lot of years feeling sorry for myself, for many reasons other than what goes on with my children. If there is one thing that I’ve learned from my grandmother, it is that I refuse to sit here and be a victim. I refuse to grow old with no friends or family to love me because I have given up on my failures. I choose to take my failures and turn them into learning experiences.

I so despise being called a good mom. Isn’t that bizarre? I think it’s because the reasoning behind it is more often than not what it should be. I want to be seen as good because I fail, and because I can admit it. That, my friends, is the definition of good.

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Nothing since January?

I’m going to have to put this in a nutshell….. I CANNOT believe I haven’t blogged in EIGHT months…..

1. J(Aspie) is starting kindergarten NEXT WEEK! His IEP is fabulous and I honestly couldn’t have asked for a better team. The Autistic Support teacher rocks!

2. E(the Wheeze) is starting preschool NEXT WEEK! Where did the time go? He’s going three mornings a week. I’m sad but need the time to work and to rejuvenate. I love him so much but he does NOT.STOP.WHINING……

3. J just developed an eye tic that we have to go get checked out now. Put a call into Developmental Peds and we’re seeing when we can get him in….

4. E’s health has been AMAZING all summer(kinna herra, pft pft). He has gained 2 lbs in the last two months and is actually on the growth chart!!!!! He hasn’t been on it since 12 months! We now have his FPIES down to Milk, Soy, Oats and Rice. His belly seems to be overall regulated with small flares every once in a while.

5. In March, we finally had E evaluated by a neurologist at CHOP. They diagnosed him with Congenital Hemiplegia, which is a mild form of Cerebral Palsy. It wasn’t a shock, as we really had it figured out in the weeks leading up to the appointment. He does NOT have low tone, he has spacticity, weakness in his lower core and right side of his body.  He is currently getting PT once a week, is seeing the chiro once a week when we can afford it, and we just called to schedule an MRI today. The doctor said he needs to get a baseline and then we need to re-do the MRI every 2 years.

I have my hands full. But my heart is fuller. These boys have made my life whole. As much as I love my husband, we were so incomplete without them. Right now my life is insane between IEP meetings, therapies, orientations, playdates and advocacy meetings. I’m trying to stay afloat but realizing that I am truly so blessed to have them. God must have seen something in me to give them to me. And for that, I am grateful.

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Are you out there?

I am feeling incredibly inspired today. I don’t know what it is, but I know when I get that feeling, I just have to go with it. Maybe it’s reading inspiring stories about others. Maybe it’s looking at my two happy children and knowing how much they touch my heart that I want to spread it onto others.

Sometimes I sit back and wonder what I can do to help myself. What can I do to better myself? The first thing anyone will tell you is do things for yourself. That is very true. You need to make time for yourself. However, some people thrive mostly from doing things for others.

I ran into an old friend this week who is currently going through an extremely challenging time in her motherhood. She is blogging about it the whole way. We talked about how no battle is worth enduring if you cannot share it with others and help someone along the way. How very, very true for my life, at least.

If I am helping you by writing this blog, please let me know. If you have a child with Asperger’s, ADHD, Asthma, Allergies, Anxiety, any A, let me know. Just let me know that you are reading. A simple response with ……. will just let me know that you’re out there. That you are trucking along life’s bumpy road with me. That my words are bringing you some type of comfort.

Like I said, no battle is worth enduring without the love and support from others. So, are you out there? How can I help you and how can you help me?

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Ten reasons my life sucks right now

Ok, well it doesn’t SUCK. It’s just difficult.

1. Jonah is having a regression and being verbally abusive.
2. I am fatter than I’ve ever been.
3. Eli is looking like he may drop his nap soon.
4. It’s almost budget season at work.
5. Eli was officially diagnosed with a milk allergy today.
6. I just bought a TON of food for Eli that he can no longer eat. Like, yesterday. Hopefully Geoff will eat it.
7. I have four people on four different diets in this house: Me, low gluten, low dairy. Geoff, low sodium, low sugar. Eli, dairy-free, oat-free. Jonah, high fat, high carb.
8. My flex money ran out for doctor’s co-pays.
9. Both of my boys have now fallen tremendously in growth percentiles. At least Jonah’s height did not fall, but Eli’s did – due to his milk allergy and us stupidly thinking it was just a lactose intollerance.
10. Geoff isn’t the happiest at his job right now.

I’ll write a top ten reasons why my life is so wonderful. But, tomorrow.

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Every action has a reason. EVERY SINGLE ONE.

This is something I’ve come to understand in the past few weeks. I’m lucky enough that I have a friend who, as an adult has just realized that she has been struggling with undiagnosed Asperger’s her whole life. The discovery that her daughter was giving her such a hard time in the morning because of socks – but could never verbalize it – made me realize that my son may not always be telling me why he is feeling and acting the way he is.

I also just started reading Asperger’s Syndrome and Young Children by Teresa Bolick. She has taught me that “My head hurts,” can actually mean something as unrelated as, “I don’t like the way that food looks.” Now when Jonah has a “behavior,” I’m finding that I can play detective and almost immediately find out what’s really going on. Do you even know how liberating that has been for me, AND for him? Tantrums are shorter, discomfort is diminished and I have a much greater understanding of his feelings. My anger towards him has all but disappeared. Even though I knew he wasn’t willfully being difficult, I still didn’t fully understand it. His overall attitude has began to shift from, “They don’t get me,” to “Oh my gosh, they REALLY get me!”

The look of relief in his eyes is priceless!

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Back from the trenches

The trenches of having an Aspie home. Full time. For a month.

This posed numerous problems. First problem was that he decided he no longer wanted to wear clothes. We finally found underwear that he felt was suitable though, thank God. So he basically spent the month in his underwear.

Any time we tried to go out, he’s protest. He didn’t want to wear clothes.

His eating became erratic. We ended up, after much deliberation, putting him on a medical supplement to try to avoid “assisted feeding.”

He had almost no services the whole time.

Everything scared him. The sun scared him. The pool scared him. The heat scared him. New people scared him. He became a complete shut-in. If we HAD to go somewhere, it was with him kicking and screaming.

My boys were at each others throats. They were NOT used to seeing so much of each other. And they are usually best friends.

I tried to take them down the shore to get help from my family, but all I got was a non-sleeping one year old and a five year old who became completely out of control. He was not in his own mind, he was somewhere far, far away. He was abusing everyone, physically and verbally. I had to get him home. Fast.

My brother had to help me get him out to the car. The nice thing about this, is my brother had never seen that side of him before. Nor had my sister and brother in law. The whole year of whispers I’m sure went on behind my back were now being retracted. They saw it now. They saw what i live with.

Jonah is now back in school. His last Progress Report from his behavior team was his best one yet. We’ve had a few regressions, but he always comes back to us. His teacher is amazing, in all ways. He is happy and content. He has FRIENDS. He has CONFIDENCE. He is feeling like things are falling into place. He starts Taekwondo next week. That should be interesting…..

So our world is good. Wheezie is having his moments, but is overall very healthy and chunking up like a champ. He does NOT.STOP.EATING….. quite a change from what I’m used to. He’s the sweetest daddy you could ever want – wrapping up his elmo in his blankey, feeding him boobie and burping him before he puts him in his “cribby.” We have frequent tea parties and he vacuums my house with a sweeper vac. He is such a sensitive, kind soul.

He is also throwing and catching balls like a three year old. He’s looking like he’ll be a lefty. My dad is over the moon! I am over the moon.

I keep hearing snippets of moms talking about preschool for next year and I almost can’t deal. I’m ready to take some time for myself and my mental and physical health, but I am not ready to let him go. I better be by this summer though!

That is all. I’ll be back. Sooner rather than later 🙂

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Started to tell him

How do you tell a child, “You have a disorder.” ? How old must they be to understand it? What if their cognitive understanding is advanced but their emotional skills are behind?

It’s not like saying to Eli, “You have asthma. This makes you a little different.” Sure, I can say that to Jonah, but the truth of the matter is that he will think there is something wrong with him, no matter how hard I try to convince him otherwise. I don’t think there’s anything wrong with him at all. I have grown to thank God that my child has a gift. My husband and I have never wanted to be like everyone else – how on earth could we expect our children to be any different?

He’s started with comments. He told his wraparound yesterday that she would not be with him in the fall. She will be with him in the fall, he has not completely met his goals. But he told her that he didn’t need her anymore and she could stay with his old teacher. He didn’t need anymore help. So he knows. He knows that he is different. He knows that she is there for him. He knows he’s the only one who gets OT.

I decided tonight to start to talk to him about it. I told him a few weeks ago after a disastrous walk through a casino and a near meltdown at Rainforest Cafe that he experiences everything more intensely than others. He got that. So tonight I asked him, “Do you know why you have Marianne?” He nodded. “Do you sometimes wonder why you are the only one with a Marianne?” He nodded again. He loves Marianne, but he hates her lipstick. So therefore, he hates her.

So I told him. “You’re a little bit different than everyone in your class. But you are special, not worse. You are smarter than everyone as well. So sometimes you have trouble controlling yourself. You have Marianne so that you have someone to go to when you feel out of control.”

I started to feel like I was going too deep. Geoff stopped me. I ended with telling him that his friend gets OT as well, but I don’t think it helped. I wasn’t prepared, and I wasn’t ready.He wasn’t ready to accept what I was telling him, either.

I want him to see, like I do, that he has a gift, not a disorder. Now if only I could figure out how to do that….

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