Be kind

It’s been pretty much forever since I’ve made a blog post but I’m due for one.

I’ve recently had several dear friends tell me their child has been diagnosed with various things. My heart breaks for each and every one of them. Knowing the struggle, frustration and pain they are dealing with as well as their precious little.

What sticks with me each time someone comes to me with this type of information, is how frustrated they are with the inconsiderate and unkind comments from others. The judgement, the misconceptions, the stigma of having a child with a “label” is not a cake walk. No parent wants their child labeled; however, to receive services they must have a diagnosis. Special needs doesn’t mean a burden to society, doesn’t mean a failing parent, doesn’t mean anything other than that child has needs that are special, special as in unique from their peers.

I frequently say “but I’m sure they mean well” when sharing a comment someone made to me with my husband. I’m not sure at what point I adopted this attitude. I don’t know if I think and say this because the idea of someone saying something so hurtful intentionally would be more than I could handle, or if I have just always looked for the best in others (probably the former). I wish I had a better way to encourage and build up my friends with special needs kiddos, I just want to hug them tight and assure them they are amazing parents and doing the best they can for their children. I’m sure being beaten up by the words of others makes them constantly question their parenting, their ability to care for their child, even the diagnosis they receive because I’m certain I’m not alone in hearing “well he doesn’t look like he has autism” or similar phrases. I’m not even going to deal with that comment, I just roll my eyes and mentally throat punch them.

Often times I wonder if the general population is aware of the difficulties and stress involved with raising a child with special needs. I wonder if they spent a day observing the life of a parent with special needs if they’d have more empathy, compassion, understanding, patience and kindness. For my family personally, we function much more like a traditional family due to the tremendous progress Mr N has made over the last five years. Not exactly like a traditional family, we still have IEP meetings, more frequent meetings with the school and his teachers, his team of therapists, etc. Doctors and dentist visits are not typical at all, to have a cavity filled, he needs sedated. He still can’t sit through an entire meeting without needing some sensory input, which usually involves him sitting in my lap, lots of deep hugs. Looking at our family, you’d probably not notice it, you may think “well he’s too big to be sitting in mom’s lap” or “why is she holding him? He can stand/walk”, but in reality he’s getting much needed sensory input from these things. It’s incredibly physically exhausting to hold, lift, and carry a fifty pound child for two hours. However, Mr N has progressed so extensively and come so far, it’s easy to forget sometimes that he does have needs that are unique to him.

Some things to think about before making a comment about a child’s behavior, they could be having sensory overload and screaming is the only means they have to cope with their overloaded system. While the parent is trying to calmly deal with their child, imagine that parent got little to no sleep the night before because quite often child with special needs are not great sleepers, now imagine that child also has a very limited diet due to sensory issues, so that parent didn’t just make one breakfast but possibly two to accommodate for the child’s need. Now imagine that parent carefully picking clothes for said child that won’t bother him/her, this most likely involves extra time and energy while shopping for the child, as well. While you’re thinking about all the extra effort the parent(s) have put into getting the child ready for one day, the child likely had at least one meltdown during the process which required consolation from mom or dad. Now add in siblings with or without special needs. If you’re wondering when a good time is to comment on a child’s behavior, the answer is never, it’s not your business. See how simple that is? You’re welcome. Also, never appropriate to comment on someone’s parenting or their decisions regarding anything ever.

I could go on, but I think I’ve made my point. Instead of belittling and tearing each other down, how about offer a helping hand, a hug, a kind word, or a word of encouragement. Being kind costs nothing. 

Missing child & IEP results

I'll start with the less dramatic results from the IEP meeting yesterday. It's Mr N's 3 year review, they'll re-evaluate him across the board and determine his current needs. His speech is still significantly delayed, but after his new evaluation we'll know more where that stands. He has a lot of articulation issues, as well as something else that I don't remember. Super helpful, right? Sorry. His OT evaluation was just done in September so they may only redo parts of that. Then we discussed his OT needs, as he seems incredibly distracted and unfocused in the classroom during seat work; constantly requiring prompting to keep working. We discussed implementing some sensory options to help Mr N stay focused in the classroom, they give him gum during OT, so I sent a bucket of Double Bubble for his teacher to use to see if that helps. They are also going to hang some fabric below the lights to help lessen the blow of the fluorescent lights, it was mentioned that there are several classrooms they will trying this out to see if it helps out the kiddos since the entire classroom is on one bank of lights.

 We then discussed an evaluation the school psychologist does that is very involved, but he said if we don't have concerns regarding his intelligence he can just focus on the areas where Mr N struggles and see if he can narrow down the deficit. Mr N's biggest struggle is writing, he is at age level in math and reading, which is nothing short of astounding.

Onto the missing child portion of today's program.....

School is dismissed at 3:15pm each day, when Daddy is out of town (which he is this week) the kiddos ride the bus to the after school program at the local rec center. At 3:35pm today I got a phone call from the rec center indicating E was the only child who arrived to the rec center and she was worried because Mr N was also supposed to be there. The coordinator calmly stated she'd call the bus barn to find out if he got on the wrong bus (at this point I realized she must not have kids because there was no panic in her voice).

I immediately called the school to see if there was any chance my baby boy was still there, they didn't have him but had seen him out by the pick up lane. The secretary said she'd call the bus drivers and call me back. I decided I couldn't wait around, I quickly raced home, to find my sweet boy in tears at home, terrified. I scooped my scared little boy up and never wanted to let him go. The secretary then called me back saying she has the wrong address on file, as she's seen us walking to/from school and knows we live across the street and she wants to run to the house to see if Mr N was there. I assured her that he was at home and I had him with me. Then, of course, I called the rec center back so they could stop looking, and they could assure E that her little brother was fine.

The entire ordeal from the first phone call to me, until I had him safe in my arms was less than 10 minutes, but it was an incredibly agonizing 10 minutes wondering where my sweet boy was located.

I asked Mr N when he started crying, as I was trying to figure out why he walked home alone, instead of looking for sissy or finding his teacher. He said "I walked in the house and said your name, but you didn't say mine then I started crying. I was 199 scared." 199 scared is the highest number of scared one can be, so this broke my heart a little more imagining my little man at home terrified and crying for 20+ minutes from when he got home from school until I got the call then home to get him. When I told E that I was so incredibly proud of her for being such a good big sister and telling someone that her brother wasn't where he was supposed to be, she said "I would do anything for my little brother."

Needless to say, I've talked to everyone regarding the plan for tomorrow as well as next week. The rec center knows both kids are scheduled to be there tomorrow; the secretary at the school knows they will be going to the after school program, she assured me she'll send him with a note; Mr N's teacher received an email so she can direct him to the correct bus after school tomorrow; and I've talked to both kids about where they are going after school tomorrow. We discussed what to do if they aren't sure, or can't find each other.

I'm incredibly emotionally exhausted and am missing my dear husband so much, 26 hours until he's back in my arms.

The kids wanted pizza for dinner tonight, so pizza is what they got. They could have asked for candy and I couldn't have refused. I'm so incredibly grateful they are both safe and sound at home. I'm off to do some hard core cuddling until bedtime.

Kindergarten

It's been a good, long while since my last update.

Mr N loves Kindergarten and is progressing more quickly than we could have ever hoped for, my son who was once lost has not only been found but is doing so well my heart soars. He started off Kindergarten with a full time one on one aide who was by his side all day to assist him, he also was pulled out for forty-five minutes a day for help with writing, speech therapy, and occupational therapy.

By the end of the first trimester of school, they reduced his time in the special ed room to 15 minutes a day for speech therapy only and he no longer has an aide. There is an aide in his class a good bit of the day, but Mr N is not his/her primary focus, it is another child.

Watching my son grow and learn so much and so quickly over the last five months has been incredible. He started off the year unable to write his own name, unable to identify his letters and barely able to count to ten. Fast forward to now, he recognizes every letter and knows their sounds; as well as read many sight words. He can count to 100 (and well beyond) with ease and does quite well with addition and subtraction; he writes his name with only mild complaints about it's length. Mr N is quickly closing the gap between his peers and himself. I'm so excited to see what the future holds for him. Tomorrow we do his annual IEP update, so we should have an even better idea of where he stands.

While Mr N brings us so much joy and happiness (along with his amazingly talented sissy), the unkind comments from others are heart wrenching. I thought that four years into this journey I'd be better equipped to handle rude remarks from others, or even the unintentional insults. It still takes tremendous restraint to bite my tongue and walk away, I'd be lying if I said I was successful every time.

I can't imagine my life without my son, the happiness and joy that he brings are endless. I am a better person because of him. My compassion and kindness that were hard to come by, are now abundant. I am more empathetic towards everyone, knowing that everyone is struggling with something. Visible or not, we all have challenges that we face and being kind to everyone we meet costs nothing.

I would not trade my son for anything in the world. I'd rather have a son with Autism than no son at all, shocking as that may seem to some. I wish for his sake that he was not riddled with a disorder that is so difficult to understand, the challenges he faces, the hurdles he has to overcome. The extraordinary effort he has to put in for ordinary tasks is still painful to watch, but the look of satisfaction on his face when he accomplishes a goal is well worth it. He's amazing.

Mr N is not the only one to bring me so much joy and happiness, my sweet E is an absolute joy. Her sweet, caring personality is so endearing. She never hesitates to help out her brother, whether it be helping him read or teaching him a new game, she's always by his side.

When Mr N started Kindergarten I returned to work full-time much to the dismay of many. While it had always been my intention to return to work once both of my littles were in school full time, I never expected to hear so many negative comments regarding my decision. My heart goes out to all mommy's (and daddy's) who deal with such unkindness upon returning to work to support their family financially. Every family is different, every family's needs are different; different doesn't mean wrong. Instead of making judgmental comments towards others, especially those we call our friends; how about offering a little support. How about considering the thought that maybe the decision they made for their family maybe was difficult for them? Maybe, just maybe, that mom that just returned to work misses her kiddos and already is experiencing mommy guilt without any help from anyone else.

My life is filled with so much love for my children and amazing husband; who has been so incredibly supportive and helpful throughout the transition of me returning to work, I don't know what I would do without this incredible man. I'm so grateful to have such an awesome partner, friend, husband and father to my beautiful babies.

This, that and the other

Saturday afternoon we took a stroll through our local downtown. At one little souvenir shop Mr N insisted "I want to get this" stuffed wolf, after repeatedly telling him no and walking away, he came to me again "I NEED to get this" to which I again responded no. He then more firmly said "I need to get this for Sissy". My eyes filled with tears because the extent of his sweetness knows no limits, I handed him my credit card and steered him towards the checkout. He proudly paid then handed Sissy the wolf he just bought her. This amazing child of mine didn't ask for anything for himself, he only wanted to get his sister a stuffed wolf, which she loves, he knows her so well.

Let me back up a few hours, we started our afternoon at the library trying to get new library cards so we could check out some books. However, they require seeing something with your current address on it, which we did not have with us. The kids were disappointed so the librarian directed us to the books for sale where we bought four books for them. Then we headed to a thrift store where the children scored five more books. E began reading when she was four which has resulted in her being a very strong reader at seven, Mr N is really beginning to love books, even likes to look through Sissy's chapter books. His favorite books, of course, are dinosaur books. By Sunday afternoon they had finished the nine books we bought the day before so Monday morning we again headed to the library for a library card. Mr N got one monster book, one chapter book and E got two chapter books that she wanted and one chapter book I insisted she needed to try. Thankfully, E loved all of the books she got so we'll be heading back to day for more.

As the school year fast approaches, my anxiety and nerves start to rise. We had completed the IEP process at the end of the last school year but we still should have at least one more meeting to discuss Mr N's needs for Kindergarten. I'm anxious to know what Mr N's school day will look like, what will he do at school, what will be expected of him, what is he capable of doing? In Kindergarten they count to 100, know their ABCs, recognize their numbers, begin basic addition and early reading. What does this mean for Mr N? Is he capable of all of that? How much help will he need to accomplish these things? His sheer knowledge amazes me as we read books he identifies the animals in the pictures, but will he able to keep progressing at a higher rate than his peers to ever catch up to them?

One of the things that impressed Mr N's teachers the most last year was his determination to be understood. If he said something he would repeat it until they understood what he said without getting upset. They said it's not often that a child has such a determination to push through instead of getting frustrated.  For me, I get irritated and frustrated when I have to repeat myself when my husband doesn't hear or understand something. Mr N will repeat himself many times over and over until he's understood. He's speaking so much better that it's rare now that he has to repeat himself. However, last week he said something that we couldn't figure out, we never did understand what he was saying and it ended with him in tears. It's heartbreaking to see him putting forth so much effort then not being understood.

My son is amazing.

Mr N starts his day every morning cuddling with Daddy, he stumbles into Daddy's office rubbing his eyes and climbs into his lap to cuddle. His sweetness is unprecedented.

I find myself at times being surprised when Mr N acts autistic, for lack of a better way to word it. He's progressed so much, is so friendly, easy going and happy most of the time that when he starts to have a sensory overload, starts with the echolalia or any kind of stimming it's a shock at first. Stress seems to bring on echolalia in a big way, he hasn't really done it much in the last couple of years so when he recently encountered a very stressful situation we had to adjust to keep him from getting too stressed. At meetings he still gets overwhelmed, sometimes holding him tight and cuddling will get him through, other times it's a trip out to the car to relax.

I don't think I've posted about Gabby, our golden retriever we got to have trained as a therapy dog. She's been through an obedience class but no therapy training yet. Mr N is still pretty rough with her, lays on her, shoves her foot in her mouth, pushes her ears back to make her smile, etc. She takes it all in stride and doesn't seem to mind.

Kindergarten

Kindergarten roundup is Thursday. I'm full of anxiety. I don't know how this all will work. I know Mr N will love kindergarten so that's not a big concern, but what should we expect academically? I feel like there are so many unknowns. He can count to 10, but doesn't recognize his numbers, doesn't know his colors, shapes, ABCs. These are all expected in K. What will Mr N be doing? Will he just always be behind? I want him to learn and grow academically but these seem like huge steps forward. He doesn't write, but can hold a pencil or crayon. He doesn't seem to be able to discern how much pressure to apply when trying to color/write. Will he be allowed to use his iPad for writing? Will he have alternate school work?

How will his academic performance affect his social interaction with his peers? His speech is still extremely delayed, he will have another speech evaluation before he starts K so we'll know how delayed. I still think he has low muscle tone, how will this effect him in PE and recess?

We meet with the development center along with the school in a couple of weeks to begin the transition process, I'm hoping that will answer a lot of my questions. However, the anxiety, fear, and stress are taking over. I want my little boy to succeed at school and be happy. He's so sensitive and sweet, I worry. Even at home he'll hide or bury his head into us if he's embarrassed or scared or hurt.

In other news, Mr N broke one of the training wheels on his bike a couple of weeks ago so we ordered him news ones, which arrived yesterday. So he spent part of the day riding his bike around in the house yesterday, he's doing so much better at pedaling. When I picked him up from school yesterday he was on the big trike and was actually pedaling rather than just using his feet to push himself along. I think that bike riding will help build his leg muscles and endurance, with the warmer weather coming we should be doing lots of riding.

Names

Mr N recently reached one of his social skills goals at school so we met to do an amendment to his IEP. His new goal involves using the names of people he knows, he says "mommy, daddy, sissy, grandma, Gabby" but he's never called our cat by name and he refers to everyone else as "him". I mentioned Mr N not calling our cat by name but calling him "kitty cat", he's always called him that. At some point I mentioned our cat's name is Elephant which is probably why he refuses to call a cat "Elephant".

Yesterday, Elephant came up the stairs to tease Gabby when I referred to him by name to which Mr N replied "kitty cat not elephant". Clearly this is not something he'll understand for quite some time, but does explain why he refuses to use Elephant's name.

Last night at dinner I gave the kids their food and Mr N said "I need a spoon", I asked "do you mean a fork", since they were eating noodles. He said "yes I need a fork". He then proceeded to use the fork, for the first time. Ever. Correctly. Like he'd been doing it his whole life.

Today it was beautiful out, I took Mr N to the park while hanging out with a couple of friends while their mom volunteered at the school for a bit. A classmate of his was also there and another child that I'd never seen before but as soon as Mr N saw him he said "oh hey you're back" so I asked Mr N if he knew the kid and he said yes, the kid referred to Mr N by name, so apparently they know each other. I'm guessing he just goes in for therapy at Mr N's school but doesn't attend the preschool with him.

After playing in the park we arrived home to see the guy still working on filling in the hole he had dug in the intersection by our house,  using a backhoe. Mr N was quite excited to see it, so we pulled up a piece of sidewalk near where he was working and watched for a while. He finished using the equipment then got out to get a shovel to get some dirt and rocks off of the curb which was simply amazing to Mr N. The man must have noticed his excitement and talked to Mr N for a few minutes, he was all smiles. The man said "what's your name? my name is Ryan". Mr N was tickled, he gave his name then turned to me and said "his name is Ryan". So the work he's been doing in class to use people's names must really be helping. We watched until it was time to pick sissy up from school.

Once we got home from school we got the bicycles out of the garage, E took off down the sidewalk showing she'd only gained confidence, speed and strength since her last adventure on a bike. Mr N was just as excited to try his out, until he remembered there were pedals. He began to cry as he only wanted to use his feet to walk the bike around but the pedals were in the way so he couldn't. I put his feet on the pedals, told him he was a big boy and could pedal now. It wasn't long before he was pedaling down the sidewalk all by himself. I was blown away. I could NOT believe he was able to do it so quickly after struggling so much last summer and being so frustrated when he started out.

I still am overwhelmed with emotions when he speaks in full sentences, when he says things like "I sure do" when he could just say "yes". Just watching him think and speak blows my mind. At one point I thought, if he can just communicate enough to have his basic needs then we wouldn't have to worry so much. Then the other day we had the most amazing conversation. He was sitting in my lap when he said "I don't want to go in a volcano, because then I'd be dead" then went on to talk about many volcano related things and how he didn't want any of his family in a volcano. So we scratched Mount Saint Helens off of our vacation list.  But seriously, just listening to him talk about random things is so incredible.

His teachers are very impressed with his progress in the last year, they can't believe how far he's come in just a few short months. They said he leads the class, when the teachers give a direction he's the first one to do it then all of the other kids follow his lead.

Here is a little conversation from the car ride to school last week. We saw two sand trucks with snow plows, I explained that they plow the snow and put sand on hills.

E: wow those guys are really nice to do that
N: those aren't guys, they are trucks
E: I'm talking about the guys inside that drive the trucks, they are super nice

A few minutes later we dropped sissy off at school, I gave her a hug and kiss then got back in the car.

N: did you kiss sissy?
Me: yes
N: that is so nice, I want you to kiss me at school

I could not be more proud of my son.

School, school, school

Mr N loves school, he is chomping at the bit to get out the door on school days and begs to go to school the days he doesn't have school, even Saturday. He is doing awesome, he is counting to 10 accurately quite frequently, he's recognizing and naming his colors and he recognizes his name. Every time I talk to Lesley, she seems astonished by how well he's doing. I'm so proud of him.

Last week they learned about fire safety, the firetruck went to their school and handed out hats, crayons, coloring books and tattoos. He loved it! This week they worked with pumpkins, cutting them open, feeling the seeds, counting the seeds, making projects with the seeds. He really likes the pumpkins and counted them for me. He is counting really well from 1-10 but when he sees something like the pumpkins he'll say "three pumpkins" then "two, four, six, seven" to count them. So we are still working on getting him to start at one each time he counts. He correctly counts the 3 and knows there are three, but when he counts aloud, he's not always starting at one. So we still have some counting work to do.

Lately, Mr N has been very interested in cooking, no matter what I'm doing in the kitchen he is there to help out. He pulls the chair over, climbs up and watches or helps if it's safe for him to do so. Today we are going to make pumpkin bread, so he will be excited to start that project.

Yesterday he was playing so cute outside with his dinosaurs and cars, so I grabbed my camera and as soon as I stepped outside he said "take a picture of me", like there was some better subject to shoot. I took several photos of him, he'd play for a bit, then look up at me and say "cheese" or just say cheese while he was playing. He really enjoys having his picture taken, he just doesn't always look at the camera.

We finally got the water line hooked up to the refrigerator, which Mr N is really enjoying, he loves getting his own water. It has a setting where we can set the amount to 8 oz and he just pushes a button and it fills his cup. He is so self sufficient and helpful. He insisted on buying another apple slicer the other day and has enjoyed cutting up his own apples (with help). He's also very insistent on helping with laundry, although he doesn't understand the actual process so I frequently find that he's thrown all of the clothes in the washer, or dryer, depending on which one is empty. One day he brought a basket of laundry to me that he dutifully carried up from the basement, it was full of dirty laundry. So I've been trying to let him help out when doing actual laundry so he can learn the process.