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.