Category Archives: Asthma and Allergies

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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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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Well hello…. old friends :(

Something happened to my babies the past few weeks. Old friends we thought were just a memory reared their ugly little rotten heads.

It started with Jonah getting sick – a simple virus that just would NOT go away. We were on our way back from the shore and he just started with a fever and crazy behavior. He would get better, get worse, get better, get worse. A week goes by and he’s still roller coastering. He’s barely eating. Probably lost about two pounds. Which probably puts him in the MALnourished category bumped down from undernourished….. at the doctors we found out he was spilling ketones into his urine, indicating that his body was metabolizing it’s own  fat stores(diabetes was ruled out a few months back). So we finally gave in to have him seem at the CHoP feeding clinic. Our appointment is in October, but we see Developmental Peds before that and can hopefully get to the bottom of what’s going on. Anyway, praise G-d, his weight came back on within a week of him getting better. But being away for a week and then stuck in the house sick for a week did not do anything positive for his behavioral progress.

He struggled in camp a bit and stopped wanting to go.  I’ve found about three rituals come back that had disappeared. He’s formed a few new compulsions. Overall, though he’s been pretty happy. His dad also went on a week-long camping trip with friends, and that threw him off tremendously. Jonah is very in tune with his “unit.” His “unit” isn’t just us, it includes his grandparents, Personal Care Assistant(wraparound), OT, counselors, teachers, friends and neighbors. If the “unit” is off, Jonah is off. He’s just happy to have his dad back, is eating tremendously and is in an overall good mood. Today, however, was our first all out tantrum since February – over a Happy Meal. I’m not complaining though because that gap is HUGE!  That, and the fact that he didn’t try to harm me during his tantrum – that’s progress!

Now onto the Wheeze. Our other old friend, the nebulizer, was brought out of the closet.  Of course Eli had to pick up what Jonah had because his silly immune system is always too busy fighting off the world(his allergies). I will say though, I honestly don’t know the last time he was on the neb, it’s been that long. He actually fell head over heels in love with it. Started calling it “Nebbie” or “Nebba”. He would excitedly ask for Nebba every time we went upstairs. I’m not sure how I feel about that. It honestly really freaks me out.

Yesterday when “Nebba” went back into his little case, Eli had meltdown after meltdown looking for “Nebba.” He is truly in love. It doesn’t help that the damn company puts a cute little fishy face on the mask. This kid loves animals! So we got through a flare without any troubles what-so-ever. It was really nice. Glad to see that these crazy meds are working for him!

I’m hoping our old friends were just here for a quick visit. They will always be in our lives, but hopefully, we won’t have to see them too often.

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Sweet dreams, Wheezie

The Wheeze is back on the neb. I really can’t complain. I honestly can’t remember the last time he had a flare. We’ve had a really healthy summer up until last week.

I’m thanking God tonight for our CHoP doctors, though. Without them, I’m SURE Eli wouldn’t have the meds that he does. He wouldn’t have a diagnosis. He wouldn’t be as healthy as he is.

I’m just sort of sitting here getting prickles every time I hear him cough in his crib. It’s not a terrible cough, and the neb is controlling it. He calls it “nebbie” now and asks for it. I guess it really helps him!

I worked today in my office and remembered exactly why I’m not there anymore. I had to have my mother in law take the entire day off of work to stay with Eli. If he were in daycare, there’s no way I’d trust anyone else to give him treatments. I spent my lunch break getting Jonah from camp, feeding the neighbor’s cat and giving Eli a treatment. I am BEAT. Definitely more beat than if I had spent a day with the boys.

So much is expected of us mothers, and the funny thing is – I could probably kick it down a few notches.

But that just will never happen.

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