My Son, The Preschooler 

In previous posts, I have mentioned about my son and his struggles. I discussed evaluations and specialists and his journey through Early Intervention. I shared those struggles because people don’t seem to be aware of just how common problems are. They think that these types of struggles are embarrassing or show some level of failure on their part. I even questioned if I was failing him and that was why he was struggling with words. It’s natural as a parent to feel like they are totally failing when something is going wrong with their child. However, I wasn’t failing him; I was fighting for him.

When you tell people that your son is in the special needs program at their school, you get a few different reactions. You may get a look of pity; poor you for having to deal with that burden. You may get questions interest; well, what’s wrong with them and what is their diagnosis. You may get questions of how to avoid it; do you think if you spent less time working that this could have been avoided and is this something I can avoid? You may get questions of your stance on medicating them. Sometimes you even get a look; the look of distaste that is aimed directly at your child.

My son still has his struggles. He has an infinitely better vocabulary that when he started this journey. He can say sentences that clearly state what he wants (if he has the words for it), he can answer basic questions, and he can show that he actually has a hilarious sense of humor and personality. He cannot always use his language effectively. He still struggles with expressing what he wants, which leads to hours long tantrums. He cannot really think in the abstract but he excels in any fact based knowledge. He has no impulse control at all, a shorter attention span than most almost 4 year old children may have  (unless it comes to something he stays fully fixated on), and pinches himself/pulls out his eyelashes. But most importantly, he is my George and none of this matters to me when he is curled up in arms, struggling to tell me the story that he wants to.

I am a mama bear, some would even say to an extreme. I will fight for him but luckily I haven’t had to yet. His preschool, which gave him another year in the program with interim speech therapy until they could test him fully, never made me fight for him because they fought for him. I know it may not always be easy and this isn’t the case for everyone, but right now his entire team is working with us to ensure he is getting exactly what he needs, and I couldn’t be more grateful for that.

To answer the typical questions I get, here it is. No, there is no diagnosis yet though early reports show he’s borderline on the autism spectrum and may have apraxia, which is often wrongly diagnosed as autism. No, there is nothing that I could have done differently. This is my son and as quirky and OCD he may seem to you, he is who he is and I love him and accept him for that and you should to. I should not be pitied because I have an amazing and intelligent son and everyone should be as lucky and I will do whatever I can for him. Finally, no I am not going to medicate him unless there is something that absolutely needs it. I don’t like the idea of messing with the chemical makeup of a brain that has not fully developed and that there are a lot of incredible therapies that can help without medication. Neuroscience is a field that is always evolving as is the understanding in cognitive psychology and I have more faith in those therapies than I do with pills. However, that is my personal choice and I don’t push that on others or judge them for their choice to medicate anymore than I would about anything else in their life that is really none of my business. I just answered the question that you asked.

At the end of the day, any good parent is going to do whatever it takes to give their child the best life possible. They will fight for them, send them to the best school for them, and make sure that they have everything that they need to survive and be happy. Some parents have more struggles than others, but it’s not a contest and parents need to stop treating it as if it is. As long as you love your child and do whatever you can to give them the best life possible, you are a winning parent. It can be hard, but never forget that.

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How My Son Got Into Preschool: The Interesting Journey through Early Intervention to Preschool

This is a continuation of sorts to my previous post, to which I will summarize for those who didn’t catch it. I was anxiously awaiting the decision of my son’s fate being able to continue services through our local preschool’s special needs program. My son started into this journey because he barely spoke one or two words by the time he turned 1. After nearly a year of Early Intervention services, he has come so far though he is still much behind other kids his age or even a bit younger. I see kids younger than him that have an easier time expressing themselves and communicating, and I feel guilty that I have somehow failed my toddler. It isn’t true though; I didn’t fail him. He only missed 3  weekly sessions between both specialists in the past year, due to illness. I sat by diligently observing the sessions to see how I could help him, and listened to every piece of advice I was given to help. At age 3, he would be able to receive these services no longer and our only hope to continue these types of services was through the local preschool.

The meeting went pretty much as I had predicted, which I will get into. The evaluators were the school psychologist and the speech pathologist. The psychologist started speaking quite frankly to us. “I witnessed some worrisome behaviors”. “He has incredible attention and focus issues and is really unable to sit still for any amount of time”. “He is quite brilliant”. I was all over the place with what was going to happen. Not that I didn’t understand what she was saying; I understood everything she was saying. But it was all mixed signals. I felt I knew where this was going though. The speech pathologist also remarked how intelligent he was, but noted that she did not feel he had a speech delay. (This point was argued by my son’s actual speech pathologist, stating that not giving him specialize services could be detrimental to his progress, as she feels he may be diagnosed with apraxia, which can’t be diagnosed until 3.)When that happened, my heart dropped. This experience could have been good for him. It could have helped him.

Finally, after the evaluators stopped talking, the head of the special needs program spoke and mentioned it was decision time. She informed us that she had a checklist she needed to go through to see if he qualified. She asked the speech pathologist if there was a speech delay, she said “no, not significant enough”. I remembered thinking it was easy for her to say after only spending 20 minutes with him. The special needs lead said “cognition and social delay”. The psychologist said “absolutely yes, to a point of hindering his speech and possibly his future education”. After a the rest of the list was “no”, I had started to give up hope that this was going to happen. The lead circled another item or two on the list, and looked up saying “your son qualifies for services, so we’re going to draw up the IEP”. The moral of this story? As I had predicted, he would not get in on his speech. Also as I predicted, he got in based on his overly energetic, mischievous, curious and often troublemaker behaviors. (It was later joked by my husband that they took so much pity on me for having to spend so much time alone with him that they figured they would give me a break.) Their reasoning? He would learn structure and be able to learn how to control his often wild inhibitions and channel that energy into focusing on his learning, which they feel would help him be significantly more intelligent than he already is. If they can get him to settle down, focus, and start paying attention, it will improve his speech, and earn them a medal in my book if they can accomplish that enormous feat.

They started to write his IEP. “He is not to be left unsupervised at all; he will escape and do what he wants”. Fact: they are right. “May need breaks from the classroom to release some of his overabundance of energy”. Also fact, though it’s been my experience that he has a never-ending flow of energy. My kid will be the one having his hand held in the line because he won’t walk in it, and my mother and speech pathologist have correctly identified that it is better this way as he would probably lead a group of rogue toddlers away from the group and go to the playground by themselves. I will not complain. All that matters to me is that he got into preschool, with a guaranteed and free slot through the special needs program. He will get a positive start in his education that I would never have been able to afford. The speech pathologist said that they will quickly learn my son’s difficulties with speech and change his IEP to include services. There is no negative here. The system worked, and I couldn’t be happier.

 

There is Nothing Wrong With My Son

Since last year, my family and I have been trying to maneuver around a tricky situation. Our youngest has a developmental delay. He was an early roller, an early crawler, and an early walker. Then one year rolled around, and he had only maybe a couple of words. Our pediatrician decided to recheck him a few months later and we’d go from there. And a year later, we are still on this journey.

Today knowledge is a heavily emphasized need that we have, because it’s how we succeed. It’s how we pass tests that are mandated by the states. We live in a society where competition in the education department is so heavily pushed upon our kids, and whether or not this is fair is  not what I am about to debate. This is about perceptions of children that are unfair.

There is nothing wrong with my son. Everyone felt the need to put in their 2 cents about him. And each bit of advice, albeit unintentionally so, was just as piercing as the next. I was flooded with “don’t listen to the doctors, they don’t know what they’re talking about. He’s just quiet”. I was flooded with “why does he need to be tested for Autism? He’s obviously not dumb.” It almost seemed like no one trusted that we could make an informed decision on our own.

My toddler started Early Intervention last summer. After a few months, he was still not making eye contact with anyone and still barely spoke. I second guessed my decision. “Why am I wasting an hour of my time a week while this woman just plays with my kid? Nothing is working.” It did seem hopeless. The specialist seemed to feel the same way, that this wasn’t working. She suggested to get him an additional specialist, a speech pathologist, and a neuropsych eval to see if he was Autistic.

Nervously, the evaluation came and went. There wasn’t enough to say that he was Autistic, but there was not enough to say that he wasn’t. I didn’t care. I just wanted something to help me help my son. Every week I analyze the notes the specialists take and devoted myself to the homework as if the grade was life or death. Every sound that even mimicked a word was a celebration. But then the evaluation showed something that none of the other testing did: despite everything, my son was a smart kid.

This showed soon enough. Any toy that the specialist would hand him, he would figure out quickly without needing anyone to show him how. If something was broken, he would hyperfocus on it to see if he could fix it. My son wasn’t dumb, we knew that. He just needed help without judgement. He needed someone to not analyze his deficiencies, he needed someone to help him grow his true potential. I kept him in Early Intervention because I knew they could help him in ways that I obviously couldn’t.

At 3, they age out of the Early Intervention Program. Speechwise, he is just starting to meet developmental milestones for children younger than him. At 2 1/2 with the words he does know, he can tell you colors and shapes without much thought. He can name letters with ease and can count. He can even point to numbers and tell you what they are. I can’t wait to see what he finds out when he gets more words.

Now he is readying for another set of testing. This will show us if he qualifies for programs in Preschool, which has opened up a new door of commentary. “Do we really want him in the special education programs?” “Is having him labelled as special needs so early going to scar him and give people a reason to bully him?” “What will the other kids think or the parents think?” Maybe the parents will think “those parents really love their kid to do whatever it takes to help them succeed.” Children that age don’t know what makes other kids different from them. That’s stuff we put on our kids ourselves.

The point of this is that you are a parent that needs to make decisions for your own children and what’s best for them. Sometimes kids need some extra help. It doesn’t mean there is something wrong with them or that they are somehow broken. Whether or kid is Autistic or has some developmental delay, that is something you have to deal with and to hell with everyone else. You can sit in denial and pretend you can do it yourself, or you can admit that you can’t and do whatever you need to help your child. I’m lucky that my insurance covers this, but I would easily work 3 jobs if I needed to in order to help my child have a better life and I wouldn’t even bat an eye. That is what parents are supposed to do: whatever it takes.

Don’t feel so alone when your child may fall short in their development. You’re not alone. You will know what to do because like with everything else in parenting, it’s all instinct. There are more people struggling with these decisions every day than you think, and you can find so much information on the internet to help you figure out what you can do and connect with other parents also going through it. I did whatever it took, and my son is constantly flourishing.

Trying to Do What Is Breast

I haven’t been around in a while. I have been caught up with work, specialists, and parenting and have once again neglected this. Finally, everything seems to have slowed down, in which now I can focus on other tasks on my to-do list, such as finally book editing and a side project I was given to accomplish. My hopes of my book being published this month seems to not be a likely goal, but I’m hopeful if I can just sit down and focus on it long enough without interruptions, I can do this. However, I am a mom of a toddler and a tween so that is all wishful thinking. All I can do is take it one day at a time.

Now, to the real topic at hand: boobs. Well, actually nursing in public. It is a hot topic of debate, especially in my little corner of Western Massachusetts.

I was casually reading my Facebook on Friday, as I had completed all my work and felt that I deserved a day on the couch clearing my DVR. I did clean off most of my DVR, but I also spent way too much time following a series of threads on a page that I liked because it was this amazing place that my toddler loves to play at. I love it, because it’s clean and inexpensive and it is awesome for working on his developmental delays that the specialists work with him on. Apparently they tried to institute a “nurse covered up or in a room” policy, which is illegal in Massachusetts. Okay, we like the law, so 300 comments about how she’s in the wrong and it’s illegal and blah blah, the page takes down the post and changes it to a series of “I didn’t know it was illegal, policy won’t be enacted, please be respectful” posts, to which the owner got equally attacked for.

I sat and read everything that was written. People that had never even been to this small business were giving it 1 star ratings to tank the reviews, which were pretty much all 4 or 5 stars. People posted pictures of themselves nursing, made comments about how formula fed babies should be covered up because it is offensive to see someone be a terrible parent and not nurse their child. People were vicious and cruel and completely out of line. What came out of a “please cover up” post came a torrent of unleashed rage upon anyone who disagreed with them or even said this place was a great place to visit. In fact, even today if someone comments about how it was a great place, someone comments about how it is a terrible place for not welcoming nursing moms. Only to unleash further viciousness upon anyone who dared like this place because it didn’t fit in with their values and views.

I was appalled. I was offended and angry. I was horrified. And it wasn’t the policy that made me feel this way. It was everything that happened afterward that I found so appalling. I think I saw the worst of humanity, the truth in the old adage about how women are the cruelest to one another. It pained me. Every word horrified me and made me wonder what made people so god damn high and mighty that they could belittle people based on their opinions when they are trying to prove a point about how they matter. They do matter, but so do the people that disagree with them. That’s what makes America so great: we are entitled to have our own opinions as long as they match yours.

Do I feel uncomfortable watching a woman nurse in public? Sure, I absolutely do. Does that mean that it shouldn’t be allowed? That’s what I trust our politicians to decide. I didn’t even like it when I was trying to nurse when the lactation consultant watched me. Am I a terrible mom because I couldn’t nurse as a result of my son’s inability to latch on? Absolutely not. Did I pump full-time to provide milk for my son? Yes I did. Does that make me any better than a person who chooses to use formula? Absolutely not, no more than me giving birth naturally makes me any better than someone who used an epidural or a C-section. Nursing or providing breast milk for your child does not make you the best mom in the world, just because. And if you think that, the problem is you. Moms need to stop attacking other moms, because being a mom is the hardest job in the world. As long as your child is nourished with good food, played with, taught lessons, and attended to, you are a good mom. Whether you nurse, bottle feed breast milk, use formula, buy baby food or make it, as long as you make sure your child is provided for that is all that matters. As long as you are there for your child and making sure it grows up with good role models and morals, you are doing it right. As long as your child is succeeding and you are doing everything it takes to allow success, you are a good mom. It’s when you start failing at any of those, that you are no longer a good mom. A drug addict that pawns off their kid all the time on someone else to raise is not a good mom just because she breastfeeds her child.

Then there is this video, from my local news site. I posted it on my Facebook, but I feel it does prove an excellent point here.

Take note of the first mom they keep panning back to outside giving an interview. I was too busy being horrified about the state of that little 8 month old daughter she had in her arms. She discussed about how she wants to empower women in any decision they make and civil rights to nurse wherever they want. Now, for those who do not live in our area, please note that when this interview took place the wind chill was in the negative degrees. Her 8 month old daughter is outside, cheeks red from cold, without protection from the cold.

So does nursing make you a better mother than everyone else? No. Should people be attacked if they prefer to cover up when nursing? Nope. Should a mother be vilified for being unable to nurse or deciding formula is the right decision for their family? Again, I’m going to say no. Should people be vilifying a company that was trying to mistakenly please everyone and put everyone who stands behind the company on some terrorism list? No. Should we start accepting everyone’s differences and opinions because that was what our great country was founded on? I say yes, and no one should ever think they are better than anyone else just because their high horse says so.

Overcoming Life’s Circumstances and Autism Stigmas

Your circumstances are not meant to define you. This means that you shouldn’t allow them to. Circumstances, like people, change. They are meant to change. They are meant to be fought against so they don’t define you; so you define them. If you want to let them stay, is it because you’re not strong enough to change them or because you are already defeated and give up? I am not a victim. I am not someone who allows these things to define my life, but I concede that they have made me into a strong and unbeatable force to be reckoned with. As I should be. I don’t see my past as a definition; I see it as just something that I defeated to be a stronger person. And while these things didn’t define me, they gave me a backbone to stand tall with. Even when it hurts, I will still stand tall and nothing can change that.

There was an expectation that I would hear the words “your son might have Autism” that I would shut down and close my mind. There is such a stigma around that one simple word, that I was unaware even existed. I studied about it in school when I was heading towards my education degree, so maybe that skewed my thought process on the matter. Maybe I’m just a mom, which makes me willing to do anything to improve my son’s life. Maybe I’m just more rational than I give myself credit for. Or maybe I had to be the rock of the family while everyone gave their opinions about what comes next. The diagnosis doesn’t scare me: the cost of everything after does. My husband is guilty of over worrying and obsessing. While I would sit back and let the rain hit me if it will, my husband comes armed with a coat and an umbrella to control the outcome. I think this comes from the fact that I learned that sometimes you can’t control the outcome, you can just take it full force or you can hide in fear. I have always hated playing hide and seek anyways.

Likewise if it turns out my son is Autistic, then that’s the way it is. At least we know, we will be armed with the resources to help him in the best possible way. I’m warned by some people about how that label will follow him and define him and make people think less of my son. It’s their loss if they are going to be so closed-minded, because my boy is a silly and amazingly smart child. I understand Autism doesn’t mean my son is dumb. On the contrary, there are many brilliant Autistic kids out there. It’s a communication disorder, not a lack of intelligence. I understand that because I’m educated, and it’s about time other people educate themselves too.

I’m a mother that is on a quest to figure out what is going to help my son communicate with me. I’m frustrated when he cries and points while trying to tell me something that I don’t understand. I want to give him what he needs, and whatever I can do to make that possible is going to be done. My son might end up with a label but I will be damned if you think that gives you the right to judge him or ask me what I did wrong. I did everything right, and some people are just born with different problems. If they don’t harm people, what makes you sit on that high horse? If this happens, it’s not because I vaccinated my child. It’s not because I didn’t have an epidural. It’s not because I drank a coffee or Coke here or there while I was pregnant. It’s because he is supposed to be this way. I love him no matter what, and if you don’t that’s on you.

Things I’ve Learned: Pediatric Surgeons, Surgery and the Like.

These are my favorite of the “themed” posts I write. It never amazes me the things I learn when I’m out and how it annoys me or makes me laugh. I understand, I might be the only one who laughs. But if you can’t laugh at yourself, what can you laugh at? There’s really no real introduction I can write about this, so I’ll just dive right in.

1) Residents are young and possibly lack any sense. In waiting for our son’s surgeon, a resident and a high school student interested in medicine appears telling us he was a resident and our surgeon would be right with us but he wanted to come in and check our son. He seemed very new to this, and I wouldn’t have cared so much if he didn’t enter the room saying what he said. As he appeared, smug smirk and all he greets us by saying “So is this George? Is he still peeing downwards?”. I looked at my husband, non-verbally asking permission to make a snide comment back or to actually punch him. Note to doctors: it’s generally not a great idea to mock a 7-month-old baby about his birth defect in front of parents who are nervous about the whole thing. Humor is appreciated; unintended mockery is generally neither appreciated or acceptable in any situation. I have a great sense of humor, I enjoy a good joke. That wasn’t funny; it was mildly insulting. It wasn’t just the comment, obviously we wouldn’t be there if the problem magically fixed itself. Don’t be an idiot resident, and I think you’ll go far. Also, developing a personality and better bedside manner would probably help further your career.

2) Compound Centers. I live in Massachusetts, home of the New England Compounding Center. In case you don’t watch the news, that’s the pharmacy that dispensed Meningitis to almost thousands of people becoming sick and several of them dying. Our baby needed a prescription and I nodded and waited for the paper to head to my pharmacy to fill it. No, you can’t do that. It needed to be filled at a compounding facility, which thankfully was right next to my husband’s work. However, the minute that I heard the words “Compound Facility”, I looked at the nurse as if she was trying to kill my child. Though I’m not entirely sure the difference between a regular pharmacy and a compounding one, aside from the meningitis and obscene cost of prescriptions without being covered by insurance.

3) My maturity level is shaky. I learned a hard lesson yesterday, that my brain sometimes has not left high school. Maybe it’s a result of my love of Penny Arcade, and finding their “doodle” contest very hilarious. Phallic jokes are hilarious, and I laugh every time. I also apparently laugh when there are pictures drawn of them in a hilarious manner. Maybe it was the nerves, I’m definitely a person who laughs at things instead of the proper emotion as a result of a defense mechanism. So when the doctor proceeded to draw diagrams of the surgery, something inside my head reminded me not to laugh, though I can’t promise I didn’t snicker a little. It’s not funny, but I probably could have done without the diagrams.

The most important lesson I learned yesterday was that I can do this. I have it in me to find the positives and ignore the negatives and I know I’ll need help, but I have an awesome husband to go through this with me and we have an amazing family that will stand by us and support us. People are social beings, and we need people to stand by us during our difficult times.

Suite 220

I get the phone call for the appointment for tomorrow, reminding me the baby has an appointment with the surgeon. This pain in the muscles around my neck seems to have tightened more. I didn’t think it was possible, but still 2 weeks later it’s now worse. Teething and lack of sleep started it, the looming surgery hanging over my head probably helped keep this pain. I know logically, this isn’t anything serious. I know that I can choose not to, but I’m not willing to say no because the downside is much worse than the surgery itself. I keep telling myself that anyways.

I’m not normally a” worry-er”, I usually leave that to my husband since he’s much better at it than I am. I over-think situations but I rarely actually worry. I go in with the worst case scenario in mind, always. Because I know that if I’m prepared for the worst, I’ll have accepted it as a possibility. Ignoring the worst blindsides you, and I hate being blindsided. I like to know exactly every scenario that would possibly happen so I can have a proper and calm reaction no matter what. It works, but usually the middle of the road or best scenario happens and that makes it a little easier.

Still, I keep researching every chance I get. I know my options. (Really, the only options are do the surgery or be responsible for my son feeling awkward or embarrassed the rest of his life.) I still don’t know if I can see him off into the OR, with all those wires and tubing attached to him while he cries because he’s terrified. I’m a strong person, but I’m not entirely sure I’m that strong. We’ll see; I tend to excel when tossed into a situation and end up being a fierce version of myself. That’s what I’m counting on anyways, because I need to be for my family and mostly for my baby.

No sense overreacting about it now. Tomorrow we’ll probably get a surgery date that I’ll circle on my calendar and look at every day obsessively. I’ll try to forget, but I won’t be able to not look and remind myself. I know I need to mentally prepare and I know I’m good at that. I’m good at shutting down to prevent any sort of negative emotion and it keeps me unhealthily strong and sane. I’ll pretend the pain in my neck and head are just a result of working out too much, though I’ve been too tired for exercise. Most importantly, I’ll remember to hug my boys a little bit tighter every day because you never really know what can happen because anything can.