By: Jacqueline Koutsoufis
I never thought I would be that emotional mom. Here I am, a mom of five wonderful children. They have all had their first day of school, first day of camp, first Christmas pageant, etc. You name it and they have done it.
I find myself sitting here on the sideline with tears of joy in my eyes. I’m sure everyone is probably wondering why I’m about to be this blubbering fool, but let me explain. My son is here playing in his first soccer game for his new school. This is his first successful go at playing a team sport. We tried when he was younger with no success. He has always struggled making friends and getting other children to understand him and fully include him.
Here he is now 10 years old and in fifth grade. For the first time he is running on the field with other children, cheering on his teammates and giving all his effort to a new activity. He is out of his comfort zone, but giving it his all. Everyone around me has no idea how difficult it is for him at this very moment. They only see a little boy running up and down the field not knowing what he is doing. Jumping up and down and occasionally sucking on his fingers to calm himself. But running with a giant smile on his face.
He is trying to include himself in a world he had longed to belong in for his whole life. He had cried for friends and cried to be included and finally he is on his way! This time I’m the one in tears instead of my son. I have longed for the day I would be able to watch my son make friends and be successful.
I know we still have obstacles to overcome. But the mountains have shrunk to hills and that gives us hope that we will be able to climb and concur these obstacles with much more ease and gratitude knowing there will be a light at the end of the tunnel.
To all the moms and dads and siblings who sacrifice so much for their child or sibling: just know that the day when you finally see them excelling and happy, it will all feel worth it.
By: Danielle McFadden
Over the weekend we went to Story Land for the first time! Yes, as children Adam and I had never been…! It really was the perfect time of year to go, with the exception of the water attractions being closed. We got there at 3pm on Saturday and got the lay of the land until the park closed at 5pm. The next morning we arrive for the park opening and were able to use our passes from the day before.
Why I loved going this time of year:
• No lines… yes, you heard it. We walked on to every ride and attraction within 1-2 minutes.
• The weather was great – not too hot!
• There was no traffic going there or heading home.
My overall impressions of the park:
• Zoe will be two this week and she was at a great age. She knows her nursery rhymes and loved seeing all the stories come to life.
• It’s clean and well maintained. Some of the rides and attractions were old, but they are in great condition.
• You can bring your own food and snacks, which is a huge piece of mind when you have a child with nut allergies.
• Right on their website there is an ingredient list with all of the food in the park – complete with any cross contamination information. Another plus for all children with food allergies!
Zoe had a great time and we loved watching her take it all in. We will definitely be back next year!
By: Amy Dienta
Dear Big Brother,
I’m sorry you have to share your room with a big Lightning McQueen bed and your little brother.
I’m sorry we waited 9 long years to have another child and you were basically an only child until you were NINE!!!
I’m sorry that Omar hit you on the head with a book then cried that you hit him. I didn’t know he hit you and I yelled at you. I’m sorry!!
I’m sorry that instead of going to arcades, Canobie Lake or Roller skating we go to parks and jump on in, due to your little brother.
I’m not sorry that you became super hero over night to a brother who adores you and wants to do everything you do.
I’m not sorry that the ultrasound day was the happiest day of your life, because Omar was a boy and not a stinky girl!
I’m not sorry that you got to ride all the good rides twice due to rider swap at Disney world; because your brother couldn’t go on them, due to being too short.
I’m not sorry that you have 2 parents and a brother who love you forever. Thank you for being a # 1 big brother, to your little brother.
By: Jacqueline Koutsoufis
I knew when my son was diagnosed at 2.9 years of age that I was in for a lot of work. I knew that we would have good days and bad days. I watched him work hard with 30 hours a week of ABA therapy, plus two hours a week of speech and an hour a week of sensory. All so he could just be a toddler. He literally had a full time schedule. With all those hours of hard thearpy work, plus doctors appointments and testing and evaluations, we were always on the go go go.
I wished and hoped that it would all be worth it. It wasn’t just hard on him, but on our entire family. His poor sisters had to give up a lot. He still couldn’t handle large crowds and noises and tired easily.
It seemed to be paying off he went from being nonverbal to talking and playing. From there he continued to make progress. He went from a full on SpEd class, to full inclusion with an aide with all his services in school, to a shared aide and monitoring of his services.
You could look at him and you wouldn’t be able to tell he was a child with autism. He could play with children, carry a conversation and therapy was almost obsolete. It appeared we were as close to a normal family as we could hope to be.
I had big hopes of being able to go on a family vacation.
However, the truth with my sons autism is it shows its ugly headed just when we think things are going great! You make great strides and then a set back!
He is ten years old and we have been living with his diagnosis for almost 7.5 yeas. We work so hard to help him and make sure he gets what he needs, no matter the sacrifice. I finally felt like he was in a place where we could go away on our first family vacation.
Not even 24 hours into or vacation my 10 year old is throwing a full on tantrum, think screaming and throwing sand, in the middle of the beach.
It’s frustrating to know that my 10 year old still throws sand at someone because they wanted to use his bucket and shovel while he wasn’t using it. Instead of getting angry and yelling back, we try the “sit down and calm down” bit. Instead he goes stiff and refuses to walk back to the beach blanket and needs to be dragged to sit. Once at the blanket he continues to throw sand all over everyone’s things which forces me to then take him back to the vacation house while the rest of the family stays at the beach to try and salvage the day. We are still at the place where everyone can’t enjoy a simple vacation together.
Here I am 7.5 years into my son diagnosis and I can still say I would not wish this on anyone. Autism sucks! Autism is hard. Not only for the child, but for the entire family. Siblings of autistic children have to make many sacrifices to accommodate to their sibling.
I still have high hopes that we will be able to one day enjoy family vacations and functions without tantrums and panic attack. I still have high hopes things will continue to get easier.
By: Sue Anganes
While at a doctor’s office visit this week with my seventeen year old son, I made the statement to the doctor in conversation, “when he was a kid…” She kind of laughed and said, “But isn’t he still a kid?” The comment took me a little by surprise because I no longer consider him a kid. I haven’t in a long time.
I think when all of my four sons turned about the age of fourteen I had the mindset to allow them to cross over. What I mean by that is that I allowed them to cross over from under the protective wing of “mom” to making their own decisions as young men.
It’s not easy as a mom to let go of things that we hold dearly close to us. Our sons are one of those things. I had to learn to allow my boys to move forward at their own pace and discover who and what they wanted to be in life. There were many times I was fearful for their well being but I forced myself to let go. When my oldest son was a teen he took flight lessons. I watched weekly from the tarmac as he took off and landed his plane. On the day that he flew solo and navigated alone to airports in Maine, Connecticut, and then back again to New Hampshire, I had to set aside all my motherly fears and let him soar. It was so very hard for me, but if I had squelched his goal because of my fears, I would not have helped him move forward in life. As it was, he obtained his pilot’s license before he obtained his driver’s license.
There were many other situations where I had to sit back and allow my boys to cross over the bridge from childhood to manhood. Most situations in my case always seemed to involve the possibility of physical harm. Here are a few things that I had to consciously tell myself to step back from, so as to allow my boys to move forward: helping with roofing projects, cutting down trees, chopping wood, driving a car, backpacking trips, mission trips to foreign countries, cycling long distances, finding jobs, and dating.
Does stepping back mean I don’t parent anymore? Certainly not! I tell my boys with a twinkle in my eye, “I’ll always be your mother!” I will never hesitate to speak up and guide them if I feel they are going down the wrong path in life, or if I feel they are doing something foolish. I will not, however, let my fears hold them back from moving forward as young men.
By: Danielle McFadden
Looking for an easy dinner that can include food from your fridge? Flatbread pizzas are quick, simple and sure to be a crowd pleaser! Last night I took left over sautéed peppers and onions and made a delicious pizza with them. All you need is a load of French bread, tomato sauce, mozzarella cheese and any toppings that you like.
Preheat oven to 350 degrees
Slice bread in half lengthwise and then cut into 4-5 inch pieces
Put the bread on cookie sheets and bake for 5-7 minutes
Take the bread out and add sauce and toppings (no cheese yet)
Put bread back into oven and bake for another 5-7 minutes
Take the bread out and add cheese
Put back into oven until cheese is melted
Take out, cool off and enjoy!
If your kids are older enough, you could create a pizza making station and allow them to pick the toppings for a personal pizza. So easy and so good!
By: Jacqueline Koutsoufis
Summers winding down and the reality of the upcoming school year is settling in. Everyone is aware that a new, hectic schedule of school drop offs and pick ups, sports practices and games, and playdates and homework is right around the corner. You can’t even turn on the TV or open your inbox without seeing commercials or fliers advertising back to school sales.
I sit here and start to get overwhelmed and have to stop and remind myself, “We have been here before! We made it through we will make it through again this time.” I always seem to have a plan, and a back up plan, and a back plan for my back up plan. But it’s those rare times we go through all our plans that makes me worry.
We do we drive ourselves crazy?! We do we over plan and over think?! We do we over schedule and stretch ourselves thin?! Why are we teaching our kids how to over schedule and overcommit? When did it become normal to think that not having anything planned or scheduled is a bad thing?
I have to remind myself to take a deep breath, relax, and enjoy not having a busy schedule all the time. There is nothing wrong with a sport, or other activity, but why do we have o have something everyday? It’s exhausting having to run from school, to an extracurricular activity, to another activity, to another activity, then home to finish homework, shower and bed- which is probably way later than we should be going to bed- only to wake up and do it all again the next day. I’m tired just thinking about it!
Enjoy a few minutes sitting with the family eating dinner at the table instead of in the car on the go to the next big thing.. You’d be amazed what you can learn about each other just by sitting and talking.
I have learned to slow it down a bit, and with that, teach my children they are not allowed to commit to something that they can’t give their full attention to. My husband and I have agreed on how many extracurriculars my kids will be allowed, and when it becomes time to drop one. School work comes first in our house and is the number one priority. If grades start to drop, those extra activities stop. We still have dinner together as a family almost every night. On the rare occasion we have to eat outside of the home we pack sandwiches and still eat together before a game.
Having a child with autism has helped my other children. My son gets overwhelmed with too much excitement or being rushed out of the house to an activity. He needs to go at a slower pace and time to transition. It has helped my other children to notice they need to slow just a bit. That everyone can’t be at a go go go pace all the time.
By: Sue Anganes
What is it about someone in a wheelchair that makes people uncomfortable? Why do they assume that just because a person isn’t walking that it must mean that they can’t think or speak either?
We ran into a situation a couple of weeks ago where my seventeen year old son, who happens to use a wheelchair, was basically pushed into a corner of an elevator by a complete stranger. My husband had the day off so we decided to spend the day at the Boston Museum of Science. My son’s girlfriend was in town so she came along with us. The parking garage elevators are huge there. We stepped into the elevator which had one other woman in it, and the woman proceeded to grab my son’s chair and rolled him backwards into the corner. It all happened so fast we didn’t even have time to respond or react. My son, who is always polite, just grabbed his wheels and said in a firm voice, “I’m fine! I’m fine!” as he was being dragged backwards.
I was amazed that the event even transpired. My son had wheeled himself into the elevator on his own and his supermodel-esque girlfriend was right beside him. Surely he would not need any “assistance” from a stranger, and surely he did not belong shoved into a corner.
What is proper etiquette when you come across kids, or anyone, using a wheelchair?
Here are a few observations from my experience with my son:
- Say hello- Kids using chairs are social-or- maybe they are not social, but you can still say “hi”. They are individuals like everyone else.
- Address the child or person using the chair, not the people with them. – “What would he like from the menu?” Umm… I don’t know, maybe ask him!
- Don’t help push the person unless asked to do so. I’ve jokingly told my son to yell, “I’m being kidnapped!” from now on and see how fast the pusher lets go!
- If the chair is sitting unoccupied, don’t hop in and try to take it for a joy- ride. That chair was fit specifically for the person who uses it and can often cost as much as a car! You wouldn’t hop into someone’s car and take it for a spin without asking, would you?
- Be yourself. If you really want to know why the person is using a chair, ask. Usually the individual doesn’t mind explaining why. Often it’s a young child who will ask, “Can you walk?” Don’t be embarrassed by your child’s curiosity. Address the question to the person in the chair and start a conversation! Kids are naturally curious and that’s okay.
My son likes history, he loves his girlfriend, he doesn’t like pork chops, he programs computers, and he shoots archery very well. Oh, and he also uses a wheelchair.