Baby Steps

Alex is doing well. Overall, I feel hopeful and positive as usual. But lately there's something that has been tugging at me in the back of my mind. Alex is making progress, but as time goes on, he gets further and further behind his peers. I've been saying for years that my biggest and most hoped-for goal is to have a conversation with him. Like, a real back-and-forth conversation with his own ideas and thoughts, unprompted. For quite some time, as his eye contact and attention improved, I kept feeling like the conversation was just around the corner. Lately, though, I'm realizing that we may be further from that than I ever thought. Yes, he has more language than before, but he is so far away from expressing independent thoughts and ideas. He can look at a picture and answer a question, like "what is the girl doing?", appropriately, with "she's playing with the ball." He has proper use of language within the concepts that have been drilled into him. But if someone asked him, "why do you think the girl is happy?" there would be no comprehension of that sentence. At 5.5 years old, he can't follow a story line in a simple childrens' book. I'm watching my friends' children blossom, and while each of them has their own difficulties (which I don't diminish,) I sit here feeling left in the dust and isolated once again. I feel like I have a handle on what to do for him - he's in the right school and receives the appropriate therapies. I feel like he's too young for me to accept that he's "never" going to get to a point of full integration in school and/or society. But at some point, there will have to be some type of acceptance. I have long since accepted his diagnosis and his differences, but I always took solace in the fact that I had a large group of friends who all had similar kids and we could go through this together. But I sit around the table with them and feel like I have little to contribute to the conversation because Alex is still stuck on light switches and spinning objects, and hasn't done anything "new" for quite some time. I had always taken solace in the stories of kids making progress in leaps and bounds, but for some of us, the progress only comes in baby steps, I guess. I don't really try to explain his recent progress any more because I realize that I'm still saying the same things as I was a year ago - his eye contact is getting better, his spontaneous language is making progress... those things are still moving forward. A little bit at a time.

I love my little guy so much and I enjoy him every day. He's a sweetheart and loves to snuggle. He sings the names of special people in his life - Mommy, Amelia, Amelia's best friend, and one of his therapists. You know you're special if he sings your name. He knows all of the words to "For The First Time in Forever" from Frozen. He still loves pickles and grapefruits and the occasional lemon. All in all, he's very easy. My experience with his sister reminds me that, at least he never argues. Arguing and negotiating with a 2-year-old is a huge part of my life right now. Thoughts of both of my kids bring me indescribable feelings of love and affection. So I guess that the unpleasant feelings are borne out of deep concern for my Alex and the wish that I could just make things easier for him. There isn't a mean-spirited bone in his body and I wish I could promise him that the world and all of the people in it would be nice back to him forever.

Summer 2014 Photos (A Couple)

I keep meaning to post some pictures of Alex and Amelia!

This is one of my favorites from this past summer 2014. They were getting ready to go to the beach!

 

 

Here they are on a ride-on at the zoo. I love the facial expressions!

Alex! Talk To Me!

It's been six months since I've written a post. I try not to go this long without writing, but these few months have been full of some changes, so I've spent most of my mental energy on other things lately.

At the end of May, I started a new full time job. I haven't worked full time since before Alex was born, so this is a big change for me as well as the family. I love the job, but figuring out the schedule with the two kids has been quite challenging. I don't even want to begin getting into how stressful that portion of this change has been, because I'd much rather talk about how Alex and Amelia are doing. I will say this: I wouldn't have been able to make this job (which, I repeat, I LOVE) work had it not been for Michael being able to be somewhat flexible with his schedule, and had it not been for some amazing friends of mine who've stepped up to help with my kiddos. You know who you are and you know I love you!

I'm feeling really good about Alex's current progress! This past summer wasn't nearly as difficult as the summer before when he was having daily tantrums. He actually did quite well with the changes; at least there were no outbursts of behaviors this time. It was more that he seemed tired and floppy a lot of the time, and he stopped answering questions and following directions. It was a clear regression, but I was prepared for it this time, and it wasn't as bad as I thought it would be. He did especially well considering he did his summer program at his new school instead of at the preschool he was used to. Plus he was with babysitters during the day a lot more because of my new job. We threw a lot at him this summer and he handled it like a champ.

Then, not long after school started (and incidentally, he started taking a probiotic around the same time,) I started to notice that his eye contact, attention, and language got significantly better suddenly. It's always been rare for him to say a phrase which is independent or not echoed or memorized, and he doesn't say much if no one is prompting him to do so. Lately I've noticed that he's more in tune with what's going on around him, particularly when it involves his sister, Amelia. As an example, the other night, Amelia was feeding me broccoli because she thought it was hilarious, and Alex was watching. He never used to be visibly amused by things like this, but he started laughing every time she fed me a piece, and after a few times, he said "Mommy broccoli eating!" That. Is. Huge. It might be hard to understand why that is huge, but it is for so many reasons. It was almost strange hearing a phrase like that come out of Alex's mouth, because it wasn't grammatically correct (he usually says only what he's been taught to say by adults.) He built the sentence like a 2-year-old does, with the words switched around. While most parents would probably not be pleased if their 5-year-old started talking at a 2-year-old level, I am absolutely thrilled! The fact that he was interested and amused enough by the situation that he felt compelled and motivated to say something about it is amazing for him! He's never been very interested in what others are doing, nor has he felt any desire to share his feelings out loud. Or it could be that he didn't know how to express his thoughts, or he could have wanted to pay attention to others, but couldn't focus because of the other feelings in his body distracting him. There are so many possibilities and so many things at play. Whatever is happening, I couldn't be happier about it!

It's funny how this happens: I've noticed that, just when I start to see progress in him, someone or some situation will point out how far behind he still is. It's like seeing tons of progress, but then going to the playground and watching typically developing kids play. It's inescapable. I don't let it get me down any more though; I've learned to be satisfied with knowing that I know what's going on with him more than anyone. I've known him from the beginning and I can see the subtle differences. Anyway, his school van drivers and aids at school keep saying lately "he's such a quiet kid" or "he doesn't say much." Yeah, they're right. He doesn't say much. All I can do is smile and know that my sweet boy is doing great.

Then there's Amelia. Oh, Amelia, my little girl who is going to give us a run for our money. Unlike Alex, Amelia never stops talking. At two years old, she talks circles around Alex but she speaks for both of them. As time goes on, I'm more and more sure that God sent Amelia to Alex as a friend, a helper, a voice, an advocate, a caretaker, and more. As siblings should, she gets a rise out of him better than anyone can. He watches her and laughs, and they play and giggle together. She also annoys the heck out of him sometimes, again, as siblings should! She's in the habit of  making sure she speaks for him too - "Mommy, I want a green popsicle. Alex wants a red one." or "Mommy, I want two cookies and Alex wants two cookies." I'm curious to see how their relationship will progress. I think that Amelia has just started to notice that Alex doesn't talk as much as her friends at daycare. Recently, she was asking him a question over and over, and getting in his face, trying to make eye contact because he wasn't answering. Finally, she grabbed both sides of his head and said emphatically, "Alex! Talk to me!" On one hand, it was sad to watch. I wasn't sure whether to intervene, but I don't think that she's ready to understand that her brother is different from her friends. On the other hand, it's good that she's noticing because if he's going to listen to and take direction from anyone, it's probably her! I think I ended up telling her that maybe Alex didn't feel like talking right now and that she should give him some space. I'm going to have to give this some serious thought because it will probably be happening more and more.

A note about Amelia's allergies - we got her tested for the sunflower seed allergy that I suspected and the blood test confirmed a moderate allergy. She's really good at listing what she's allergic to now, and she'll tell us that she can't eat peanuts, tree nuts, or sunflower seeds because they'll make her sick. It won't be long before we can teach her to recognize these foods and know that she needs to avoid them. Now, she continues to get hives sometimes after eating foods with none of those ingredients. Like, for example, banana muffins. I can't figure it out because I've made different batches - with or without oil or butter, made in clean/new muffin tins to avoid cross-contamination, and she still gets hives every single time. I swear that she's not allergic to any of the individual ingredients because she has all of them in other forms without any issue. I don't get it! I've read about people having an allergy to raw bananas but can eat them cooked, but not the other way around. If  I ever solve the mystery, I'll write about it!

Potty: No Dice, and More Changes Coming

I was really hoping that by the next time I wrote, Alex would be potty trained and all of those feelings I was having a month and a half ago would feel like ancient history. Unfortunately, that is not the case. He continued to withhold his bladder and bowel movements for weeks, to the point where he became constipated. I took him to his pediatrician and she referred us to the Pains and Incontinence Program (PIP) at Boston Children's Hospital. They see children who have behavioral issues around toileting. They got us quickly into a cancellation slot, so we had our appointment a little over a week ago.

Basically, they didn't give us much new information. We told them (a fellow and an attending physician) all about what we've tried with Alex over the last 2 years. They checked him out and made sure that nothing was physically wrong with him. Then they gave us our plan moving forward: we should keep him in pull-ups or diapers since wet clothes don't seem to bother him anyway. We'll take him to the bathroom every 1 - 1.5 hours and have him sit for 5 minutes. We are to keep everything around toileting as positive as possible - no correction procedures when there are accidents, and let him play with toys or read favorite books while he sits. When he does have success, reward him as we've been doing. They told us that, while by the calendar he's almost 5 years old, we have to keep in mind that developmentally, he can't be expected to do things that typical kids his age do. They told us that we might just have to do this for a "long time."  We're supposed to fill out a developmental profile and send it to them, and check back in a month. The way this week has gone, I don't think that there will be much to report. Alex is happy to go in and sit on the toilet but he never actually pees in it.

By this time, I am, of course, fully aware that Alex has major deficits in comparison to his typical peers. It still hurts to hear doctors tell me to expect less from him, though. On that note, I'll mention the meeting we had with his preschool teacher and administrator regarding Kindergarten placement.

Ever since Alex got his diagnosis, people have asked me about his school program and his future education. All along, I've been saying something like, "The assumption and hope is that by the time he enters Kindergarten, he'll be 'mainstreamed' or put in a classroom with his typical peers." I found out this week that this will not be the case. I should have known that he wasn't ready to be put in a mainstream classroom yet, but part of me didn't really know what to expect. Right now, Alex is in a partially integrated classroom, but next year, he's going to be joining a fully separate classroom. That is, he's going into the "special ed" program with no integration other than the occasional mingling with peers during structured activities or visits into regular Kindergarten classrooms.

Don't get me wrong; I am very grateful that Alex will have access to this program. It's known to be a great program in the area, and even better, it's in his home-school, where he would be going if he was in "regular" Kindergarten. The building is 3 minutes from our house, if that. He is behind his peers in every area so I knew that he wouldn't thrive in a regular classroom. In this program, he'll get a lot more one-to-one therapy and small group learning opportunities. His current preschool teacher (whom he's had for 2 years and is wonderful) used to assist his new teacher and said that she learned a lot from this person. He'll be in very good hands moving forward.

That said, it's still hard to hear that your child needs to be in a separate program from his typical peers. I don't want him to get picked on or bullied for being different. But as a parent, I don't feel like there are many options right now. The priority is his future and if we stick him in a classroom with little or no support, his learning is going to slip, big time. As usual, I have to face reality and accept that Alex is and will always be different from his typical peers. I just hope that what we're doing with him now while he's young will eventually help give him the opportunity to pursue his own happiness in life. That's the most important thing. My parents helped to give me the opportunity to explore and find my happiness, and, God willing, that's what I'll do for Alex.

It's Potty Time

I've been avoiding the topic of toileting because it's sort of a sore subject for me. A year and a half ago, shortly after Alex turned 3, we began a potty-training regimen. With the help of his BCBA and ABA therapists, we tried to get Alex to start using the toilet. The whole process was a nightmare. I can't even remember the details very well, but I have visions of me sitting outside the bathroom on the floor and nursing Amelia while trying to listen for a little tinkle coming from the bathroom. We tried a bunch of different tactics, including books and sticker charts and rewards, and waiting him out when he hadn't peed for more than 3 hours. He sat as long as 2 hours a couple of times. After a couple of weeks of this madness, I decided that we should scrap the whole thing and take a break for a while. Several months later, I asked his preschool teacher if we could start a toileting program at school. While she didn't think that he was ready, she agreed to try a program for one week. He went to school in underwear (no diaper) for the five days, and they took him to the bathroom every 10 minutes to sit for 2 minutes. We followed the same routine at home. He had accident after accident and no success at school, and it totally disrupted his learning. The progress at home was also non-existent and his teacher strongly suggested that we discontinue his toileting program.

It has been on my mind since then, and I've been starting to feel the need to toilet train him growing more urgent as time goes on. He'll be 5 in May and will most likely be starting Kindergarten in September. He's at least a few months to a year older than most of the kids whose moms I talk to, and there isn't ONE of those kids who isn't potty trained. After the dust settled from the holidays, I decided that we really needed to get a move on and start the training again. I prepared for it for weeks. I made Alex a social story, complete with pictures of him sitting on the toilet and we started reading it two weeks before starting his program. I talked to his teacher and got her on board with my plan, and I made Alex a personalized sticker chart which resembles the Candyland game board. We isolated his favorite treat (cupcakes) for going "number two" on the potty, and reward him with chocolate chips, candy, or other treats, which are all laid out with visuals on his sticker chart.

Well, the potty training started about 3 weeks ago. While I'm so determined to make it work this time that I don't yet feel like giving up, I've almost been reduced to tears several times. He started to have some success at home right off the bat but then seemed to grow resistant, and will now hold his bladder for 5 and 6 hours at a time, then have an accident 1 minute after getting off the toilet. We take him to the bathroom every 10 minutes and have him sit for 2 minutes, and are supposed to be able to increase the time to 15 minutes and on as we see success. For about half a day I considered increasing his time and then he started having a lot of accidents again. I am so tired of cleaning up pee from carpet, and washing pee-soaked and poop-soiled clothes. This week is February break from school, so it doesn't help that he won't sit on toilets that are new to him (ie at the babysitter's house) without throwing a huge fit. After two weeks of constant accidents and no successes at school, he finally had one full accident-free day last week. Then we had two snow days in a row, messed up his whole routine, and threw him into vacation week when there's no sense of consistency for him.

I guess the one accident-free day is what's keeping me hopeful right now. I was expecting regression during vacation week, but it doesn't make it less monotonous to be constantly interrupting every activity to take Alex to the bathroom. We have a timer going all the time - 10 minutes, then 2 minutes, and I'm always watching him for "signs" that he's going to go somewhere and have an accident. I get to that point almost daily where I asked myself, "What on Earth am I doing?! This is crazy nonsense!" I have to remind myself that it *should* be going somewhere, soon.

I hear from so many people about how kids will just "decide" to be done with diapers, and that's supposed to give me hope. I've long become used to hearing things like this and knowing that Alex just doesn't fit the mold. I mean, maybe eventually he will decide that he wants to be potty trained, but it's not looking like that's going to happen before he's due to go to Kindergarten. Yes, his classmates are through with diapers, but he has no apparent strong social interest in his classmates.

Right now, I'm feeling frustrated and exhausted with this process. Hopefully by the next time I write, Alex will be fully potty trained and these feelings will be ancient history. One can hope.

In the mean time, Amelia, who is 18 months old, tells me BEFORE she is going to poop. She's going to be potty trained before she's 2. 

Food Allergies

When I started this blog, I had one child with autism, and an infant baby girl. Well, Amelia is now almost 18 months old and turning into a little firecracker toddler. Before she was born, I was worried about her increased risk of having autism. It didn't take long for me to figure out that she was NOT autistic. She is about as "typical" as they come in a lot of respects. I was definitely not, however, expecting her to have food allergies. I know that food allergies are on the rise, but as with anything unexpected, I didn't think my child would be one of the statistics.

One Sunday morning (November 3rd, 2013), Amelia was demanding my toast which had peanut butter on it. While I don't always give in to her demands, I was feeling particularly awed by her cuteness at that moment, and decided that since I considered her at low risk for a peanut allergy, it would be fine to try it. I gave her 2 or 3 bites of my toast and within 5 minutes she got red, angry hives all over her chin. We went to the emergency room and were discharged after 3 hours without incident; her reaction didn't progress into anything more than hives. We've since been to a pediatric allergist and her tests (both blood and skin) came back as reactive to walnuts, pecans, hazelnuts, and almonds in addition to peanuts. We also suspect that she's allergic to sunflower seeds/oil or something else that is commonly in processed foods but not required to be labelled because it's not a common allergen. We'll be finding out more about that as time goes on.

All in all and so far, having a child with food allergies is not nearly as challenging as raising a child with autism. The feelings I had when Amelia first had a reaction to peanuts was similar to the feelings I had when I first discovered that Alex had autism, but they were not nearly as intense, and lasted only a tiny fraction of the time. I would consider that short time period more as an adjustment than as a major life change. I had some of those long-term thoughts about how my daughter's life is going to be with food allergies; she is going to have to read every label and ask questions at every restaurant for the rest of her life. We never eat at McDonald's so when we were traveling for Christmas and stopped there because it was the only option, I asked so I could be sure their fry oil wasn't blended with peanut oil. I was pretty sure of the answer, but I wanted to be totally confident. When I asked the girl at the register, she looked at me like I had two heads (and proceeded to ask the manager to answer my question.) That's not the only example of feeling that I'm inconveniencing or annoying a server at a restaurant by asking questions. It's okay, though; I've long gotten over caring that people can't be accepting of my children. That is the least of my worries. Clearly, it's more important to me that my children are happy, get their needs met, and, well, survive by not eating things they're allergic to!

Amelia's food allergies, so far, have not been life-threatening. I'm well aware that any subsequent exposure to allergens can increase the reaction and she could have a more severe reaction any time. So just as our family has made adjustments for Alex's needs, we have to make adjustments for Amelia's. And just as we're in the beginning stages of our journey with Alex, we are in the beginning of our journey with Amelia. God willing, I will have many fun, hopeful, and beautiful years with these wonderful, special children I've been blessed with, no matter what difficulties present themselves along the way.

Good News

I wanted to write an update about my husband's job situation. It turns out, he had every reason to be optimistic; he got a great job offer just a little over a week after being laid off. The new employer offers insurance plans from the same company we had before so we are greatly relieved. His commute is much shorter which is also good news. This adds about 2 hours back into his day that he used to spend commuting! Now that the job change is behind us, I can look back and conclude that we're better for it. The lay-off was stressful, particularly because of the timing, but it worked out that Michael got some extra "vacation" time at Christmas so he was able to relax and not worry about work at all for about 3 weeks. If I think about it, I can actually be thankful for the timing. Most importantly, none of Alex's services were disrupted and we were able to transfer everything to our new insurance plan without much hassle. I'm fully aware of how lucky and blessed we've been that things worked out so well in this stressful situation. Therefore, I'm starting the new year with a positive attitude and lot of hope for 2014!