Who knew a brief interaction with a neighbor could bring about so much reflection
Being a parent no matter who your child is will make you feel exhausted, angry, sad, anxious, incompetent and so much more.
I’ve found that being a parent to a child with special needs makes me feel that I have to be careful with who I share these feelings with. Even with close family and friends I feel like I have to add “but he’s amazing and I wouldn’t change him for the world” and that’s true.
There just seems to be this added pressure to keep any perceived negative feelings hidden. I worry that others will think I’m blaming Griffin and his diagnosis but that couldn’t be further from the truth.
And to those sweet souls that say “don’t worry what others think” I say “I love you, however I’m a mom and for Griffin to get the acceptance and opportunities he deserves what others think is important.
So in an attempt to live more honestly and to encourage others who are parenting a child with special needs and to all caregivers who care for children and adults that have special needs or health challenges, I want to remind you that all of our feelings are valid and that we are allowed to feel those perceived “negative” emotions. These emotions don’t mean we are horrible people, it means we are just like everyone else.
So here goes:
I feel exhausted because the meltdowns can be intense.
I feel exhausted because I’m always trying to prepare for the “what if’s?” and worrying that others will be unkind and not understand Griffin and our situation.
I feel angry that I can’t change the world and make life easier for Griffin. That even though the world has come along way with knowing about autism, we still have along way to go.
I feel sad because in the beginning of our road to discovering Griffin’s diagnosis of Aspergers, we had many traumatic moments. From seeing him placed in a closet in kindergarten to knowing there was something going on but not being able to get a diagnosis and then once we did not having the proper support and resources.
I feel sad because Griffin has to work so much harder at things than most of us do. But it makes it all the more meaningful when he does get it.
I feel anxious for Griffin’s future. I know he’s going to do amazing things but just like any other parent I worry.
I feel incompetent because well, I’m a mom who just wants to know I’m doing the best by Griffin. Griffin keeps me on my toes!
And while I’m on a roll:
I’d also like to add that Griffin makes me feel exhausted, angry, sad, anxious and incompetent just because he’s a teenager 😉
But more than anything I feel tremendous love and gratitude that I get to be Griffin’s mom and yes, I feel exhausted too!
To all of you, please know you’re not alone. Keep up the great work! xo
The last week or so has been extra crazy.
I thought I’d share some of the details so you could either
A) Laugh B) Thank God your week wasn’t like ours C) Realize you’re not alone in having a crazy week D) Be glad you don’t rent your home
My birthday happened to fall on Easter this year (yep I’m an official fool) and because of this we decided to go away for the weekend.
We also decided to turn off the heat while we were away, more on that in a minute.
Everything was going great until the day before my birthday. We decided to go to the local zoo and while we were walking I fell, I fell hard. How hard did you fall, Missy? So hard that my pants split at the knee. Tom was walking ahead of me but heard me and actually thought I was dancing, not sure what that says about my dancing.
Griffin did great on the trip. In the past despite loving to travel, the excitement would often bring out challenging behaviors in Griffin. There would be increased hyperness and overall sassiness but we keep trying because the world needs more Griffin!
Then our landlord texts us Easter morning that a painter was going to be coming by this week.
Tom had been trying for the longest time to get details from our landlord about when the painting would start. He explained that because Griffin is homeschooled and receives therapy at home we would need time to prepare. Our landlord never acknowledged this and just texted one word, Monday in response to a text Tom sent asking once again what was going and when the painting would start.
Before we knew it, it was time to head home.
Once inside we see them. Our beautiful beta fish. The most expensive fish we’ve ever bought, well I should say Tom ever bought. You see when Tom went with Griffin to buy them he didn’t notice a price on any of them. So instead of asking he just went to the register and paid $50 for all three them! He didn’t have the heart to not buy them because Griffin had already started to bond with them. I was shocked by the price and that Tom didn’t ask but honestly I thought it was very sweet that he still bought them for Griffin.
So back to what we saw.
We saw $50, I mean three fish floating in the water. We realized right away that they had froze due to our decision to turn off the heat while we were gone. What the hell were we thinking? We live in Chicago for God’s sake!
Griffin immediately starts to wail. Just weeks before he had become worried that the fish would die and had started to be more engaged with them and even taking care of cleaning out their tanks when they needed it. Every morning you could hear him talking to them, it was very sweet.
Tom in his awesomeness got our portable heater and places the fish near it. Not close enough to cook them, geez that would be all we needed!
Miraculously one of the fish began to move! And after just a few days he’s back to normal. Although we may have to get him therapy at some point.
Griffin continued to be upset and insisted we go and get two more fish right away. That wasn’t going to happen and after about an hour of him yelling and crying he was able to process what had happened better. We told him that we would go get new fish the next day, not $50 worth but he could pick ones that at least resembled the old fish.
One of the things I’ve learned since being Griffin’s mom is to embrace whatever the day brings and trust that it will bring something to be grateful for and to laugh about.
This weekend showed us that as a family we’re pretty strong and sometimes we make not so smart choices 😉
We got to see how far Griffin has come, his turn around was amazing.
I also learned that I’m trendy without even trying. I have at least three pairs of jeans with holes in them and all I had to do was dance 🙂
Recently at one of Griffin’s appointments I noticed a woman who looked really familiar to me.
I just assumed it was because we see her in the hallways at Griffin’s regular appointments.
But then it hit me…
This woman was the first doctor to diagnosis Griffin with having Aspergers.
I remember that day so vividly.
We were living in downtown Chicago after just moving from New Jersey. Griffin started kindergarten and by the second day I was getting pulled aside by the teacher who was already concerned with Griffin’s behavior. He was having a hard time staying seated, would get silly, and have a hard time with transitions.
At first we thought his behaviors were due to the move, starting full-time school, and the size of his classroom.
But before we knew it we were making appointments with specialists to figure out what was going on. This was a very stressful and confusing time for all of us. Up until this point we just thought Griffin was quirky and had an easy time learning new things. He had attended pre-school in New Jersey without any issues.
The first appointment was made with a specialist at Children’s Memorial Hospital.
While Griffin enjoyed the toys in the waiting room, I remember sitting there wondering what they were going to tell us. Tom was unable to go with us and I was worried that I wouldn’t be able to remember everything the doctor would tell me.
Soon enough we were brought into the doctor’s office. She asked me some questions and then spoke with Griffin.
The appointment lasted no more than 20 minutes and then the following diagnosis came out of the doctor’s mouth, “I believe Griffin has Aspergers. He’ll most likely have a job that uses his high intelligence and marry a woman who is also highly intelligent. Oh and it will always be something.” This last sentence was regarding that there was always going to be something Griffin would have to work on to overcome.
My brain almost exploded. The questions I was thinking wouldn’t stop. What the actual hell was going on? What is Aspergers? How could she know that was what he had in such a short amount of time? How am I going to keep it together until we get back home? Does this mean there’s something WRONG with Griffin? And although the future she predicted sounded great, how could she know that? And really thanks for giving us hope by adding the “It will always be something.”
The doctor suggested Griffin attend a social skills group and sent us on our way.
I went home stunned and called Tom to let him know how the appointment went. I had no problem remembering everything she said.
That night we went through so many emotions, from sadness to pride in knowing that Griffin was exactly who he was supposed to be and that we wouldn’t trade him for the world (at least not until he turned into a teenager 😉 ).
Then we tried to come up with what to do next.
We decided to get a second opinion and was once again told it looked like Griffin’s diagnosis of Aspergers was the most accurate. I felt more comfortable with this doctor because she took more time with us and acknowledged that she understood our concerns with the first diagnosis.
We didn’t know what to tell our family and friends. For the longest time we didn’t say anything because we didn’t understand what was going on and to try and explain to others seemed impossible.
It’s been almost nine years since that appointment. The progress Griffin has made is amazing. He proudly tells people about his Aspergers.
We’ve been so fortunate to get so much insight directly from Griffin and the specialists that he’s worked with.
Now when I see this Doctor I can’t help but laugh to myself. Because she was right about at least one thing so far, It really is always something!
As we approach autism awareness month I wanted to share a moment from our day. We’re heading out for the weekend and Griffin wanted to bring his favorite movie #ponyo to watch in the car. Unfortunately the dvd is scratched and skips. G became very focused on fixing it but nothing worked. The movie was a gift, so I offered to buy him a new one but it wouldn’t come in time for our trip. He began to get really upset. He insisted that it had to come before we left because it was his favorite movie. I tried to calm him down by explaining that the movie would get here by the time we got back, so he had something to look forward to. If someone that didn’t understand autism saw what was happening they might have thought he was a brat and I was spoiling him but THAT IS NOT the case at all. After a moment he calmed down and was able to process what had happened. He even had the idea to use the old dvd has a decoration. I am so proud of him. I’m also exhausted!
Finding places where Griffin can learn and grow has always been a challenge. Social groups for those with special needs have been a wonderful place for him to learn. But he also needs to be in situations that aren’t a controlled environment. Griffin isn’t just a person with special needs, he’s also a typical teenager. He needs a safe place where he can learn, where people understand his uniqueness. This is not an easy task.
I’ve been working on this piece for a while now. I’ve experienced so many emotions and I wanted to make sure that I wouldn’t be coming from a place of anger when I shared.
So here goes:
This past summer Griffin attended a teen camp at our local “Y”. We were so excited and hopeful. The camp would be focusing on teaching the campers skills to help them become a camp counselor.
Things were going really well until Griffin came home and started sharing some interactions he was having with some of the other campers.
The incidences involved Griffin being called “creepy” for staring and for complimenting a girl’s swimsuit. He made the comment because he actually liked her suit and remembered her from last years summer camp. He was also told “I can’t wait for you to go to jail” by a fellow camper.
I mentioned all of this to the camp director and to the youth director. I even told them that these things might have happened due to something Griffin said or did that the other campers might not have understood. I was told that the campers shouldn’t have said those things to Griffin and that they would take care of it. I was really hoping that this would not only be a learning opportunity for Griffin to understand others but for others to have a chance to understand Griffin.
Each day we would check in with Griffin. I stayed in contact with the camp but soon realized the quality we had come to expect was not happening.
The kids were allowed to have and use their cellphones and gaming devices despite there being a rule that these items were not allowed to be used during the camp hours.
Because of the things some of the kids were saying, Griffin became worried that someone was going to film him and then put it on YouTube. This fear was based on things he had seen on television. (I can’t imagine being a kid in this day and age).
Even though there were some challenges socially, Griffin would talk about having friends. He began talking about a girl (we’ll call her Maya), and how they both loved classical music.
But his inability to “read” people made him vulnerable. When Griffin is feeling strong emotions he often has a hard time expressing himself. He has difficulty with figurative and literal concepts which can lead to misunderstandings. An example of this might be him saying he wants to die. He doesn’t really want to die but his emotions are so strong that someone that doesn’t know him and his special needs might become very concerned. Once you talk it through with him, he’ll say “Oh, no I don’t want to die, I just feel stupid.” Even though Griffin can communicate in a traditional way, communicating his emotions is still a real challenge for him.
In an attempt to connect with Maya he shared that he sometimes feels really sad and doesn’t like himself. And that he wishes he was never born. He also shared that he doesn’t always get along with his parents. He didn’t understand that saying these type of things to someone, especially another kid, might make them worried.
Before I go any further I want to let everyone reading this know that Griffin has an amazing team of professionals that are helping him work through moments that are related to Aspergers and those related to being a typical teenager.
In this moment of sharing with his new friend, Griffin was just having a typical teenager conversation. The kind where you share with a friend your feelings, knowing you have a safe space to do so. These are moments we all have had as teenagers and moments we continue to have as adults.
Maya, out of concern, decided to share with her parents what Griffin had told her.
That evening I received a call from the now former Youth Director of the “Y.” She told me how a fellow camper’s parents had called to let her know about the conversation between their daughter and Griffin. Somehow they thought Griffin might hurt himself and it was also reported that based on the conversation Griffin might be in an abusive relationship with a parent.
I couldn’t believe what I was hearing. I reminded that director of Griffin’s special needs and that he had a team of experts working with him, that this was all a misunderstanding. That Griffin doesn’t always understand. I mentioned again the other incidences that had taken place since camp had started and that one of Griffin’s challenges was social interactions. She said she understood and made it sound like she just had to let me know and not to worry.
I immediately reached out to his team. They all said not to worry and that they would do whatever was needed to help. I was told that it was probably going to have to be reported to DCYS, the department of child and youth services.
Tom and I were shaken, some of our worst fears were happening. The fear of something Griffin said being misunderstood. The fear of our parenting being questioned and having to be investigated. We live in a world we’re were always questioning if we’re doing enough for Griffin. If he’s getting everything he needs to thrive. The simplest thing, like signing up for a class, requires a lot of preparation and trust.
I can’t blame the girl for telling her parents, she was just doing what she thought was right.
I was angry and frustrated at the camp and how things had reached this point. I had worked hard to communicate with the camp things that might happen and how important it was for those working with him to have as much information about him and his needs.
The fact that a counselor was never aware of any of the things that were happening was concerning. And when they were made aware it was treated like it was no big deal.
I was also really disappointed. We had had such success with the other “Y” programs Griffin had been involved with, we really believed that would continue.
We waited to see if a case manager would show up from DCYS. We were told that if they did it would be unannounced.
I tried to get updates from the camp but was told they couldn’t say anything. I was hoping to be able to sit down with the parents and child who Griffin spoke with in hopes to help them understand Griffin but that wasn’t possible.
We were concerned that further misunderstandings would happen and at the recommendation of his team we had him skip the last two days of camp. When I told Griffin he asked “Is it because of what I said?” I was heartbroken but answered him truthfully. I let him know he didn’t do anything wrong. It was complicated and that we would work through it. He was confused and wasn’t sure why his friend thought he had a parent that was hurting him.
Exactly two weeks after the call, it happened.
Griffin was just finishing up his ABA therapy when I heard a knock at the door. I thought it was a package delivery. As his therapist, Ashley, was wrapping up, I answered the door. But it wasn’t UPS, it was a woman that at first I thought was going to try and sell me something. I was just about to say “I’m not interested” when she said “Hello, my name is Roseline. I’m from the department of child and family services.”
I froze. She had to ask if she could come in. I turned to Griffin’s therapist and asked if she could please stay. Thankfully she was able to. Ironically we had just been talking about when or if a case manager would be coming right before Roseline arrived.
Still nervous and trying to process things I led Roseline into the house. Once again she had to ask me a question, “Is it okay if I sit?” I told her of course and then more questions followed.
She was kind and realized quickly that there was no need to be concerned. Griffin was able to answer her questions. Having a member of Griffin’s team present made the process go smoothly.
I asked what the next step would be and Roseline told me that there was nothing else that would be happening because she felt Griffin was receiving everything he needed. She even complimented our parenting and the amount of support Griffin was receiving.
When Roseline left, because I was still shaken, I asked Ashley if I had acted alright. She smiled and said “You were you, Missy.” I think that was a good thing 🙂
As things settled down we tried to see the positive things that came out of all of this.
We realized that Griffin was given a learning opportunity to understand what it means to share his feelings in an appropriate manner. It also helped him and his talk therapist start working on the big emotions adolescence brings.
For Tom and I, we learned that as scary as it is, it’s important to keep providing Griffin with opportunities to interact with others.
I’m concerned that by sharing this moment I’m adding to the confusion and misunderstanding of what Aspergers means to our family. But I realize that it’s important to keep sharing because in the end I believe it will actually bring more understanding and awareness.
Here are some pictures that capture my day so far. I enjoy “Blue Apron” but I seem to end up in tears while cooking most of the meals I order, is it just me?
I think in the end, despite the burnt broccoli it ended up pretty decent. At this point pretty decent is what I’m trying to achieve if nothing else 😉
These lovelies came just in time. I’m so glamorous, don’t you think?
Some may think I accidentally closed my eyes but really I’m taking a quick cat nap. Being pretty decent is exhausting!
As some of you may know, Griffin has been having a really hard time with people that smoke. He just couldn’t seem to understand why someone would have that habit when they knew it was harmful to their health and to other people.
We tried everything from sharing that smoking is a habit, just like his cursing. We also shared that people he knows and loves have smoked at one time and that he knows people that still do smoke.
He was able to give love and understanding to the people he knew but walking past a smoker he didn’t know was a whole other thing. He would make a gagging gesture or whisper in my ear that they were idiots.
We tried positive re-enforcement. I told him to squeeze my hand or tell me he loves me when we saw a smoker. These suggestions worked for a minute but then he was back to reacting in a negative way.
One of our family mantras is “We’ll never stop trying.” Four of Griffin’s great-grandparents smoked. Even though he never met any of them I was inspired to tell him to think of smokers this way, “Griffin, what if every time you see a smoker it’s one of your great-grandparents saying “Hello” and reminding you to be kind?” Griffin loved the idea and now when we walk by a smoker he asks “Is that Grandpa Fernando? Is that Grandma Zonie? That’s Grandma Kay saying hello! Is that Papa Clem?”
It’s a wacky way to remember our grandparents but I know they’re in on it and are getting a big chuckle out of it.
We’ll Never Stop Trying and have angels helping us along the way 🙂