I feel for you. I really truly do. I know what you are going through. I’ve been there.
My son is 6 years old and has developmental delays and sensory processing disorder because of sensory deprivation during his formative years (he was deaf). He often presents with autism like characteristics and has been in therapy for 3 years. I am also a teacher and my husband is a Special Education specialist. Yet we too have been there….
Your son is 3, so I’m guessing he’s “newly diagnosed” on the spectrum and I’m guessing you are a new autism mom. I know how overwhelmed you must feel, how much information and “advice” is coming at you, how you long to give your child a normal childhood, and the frustration you feel when it doesn’t work out as planned. I know the stares, the questions, the judgments, and even the well-meaning looks of sympathy that make you want to crawl into a hole and never emerge. I’ve been there, too.
I’m about to tell you something I’ve told only my closest family and friends. We were kicked out of a hotel back when my son was 4. Yes, a hotel. A well-known chain too – you’d recognize the name if I said it. We were “Rewards Club” members. We took our family overnight because it had a pool. Our plan was to sleep in the big comfy beds, and wake up to swim in the morning. My son was excited to be there. As most sensory seekers, he explored the room, ran around with excitement, laughed, and enjoyed the space. Unfortunately, we were on the second floor and someone was below us. Management called up that they downstairs guest was “complaining” about the noise. Now, even though my son does have SPD, I did not feel he was doing anything more than a toddler would do. He was not overly loud, nor was he having a meltdown. No, he was having fun. That’s it. But it was too much for Mr. Downstairs. OK, we quiet him down and my husband took a walk to the front desk to explain the situation. Yes, we TOLD them. But a second call came in. Our only resolve was to give the kids a quick bath, get them to bed early, and wake up early to the promise of a swim.
We got up early to prepare them for the pool. We got their free breakfast and ate in the room. My son, once again, was excited, but not overly loud. We got a third call from the front desk, and my husband went down a second time to tell them again about our situation. Mr. Downstairs, however would not stop. Soon, a knock on the door. The police. Mr. Downstairs called the cops on us, claiming he was hearing “banging” and crying. I was in tears, my daughter was terrified, my husband furious. We told the cops the same thing he told the front desk two times before, and we relayed our experience over the last 12 hours. The cop apologized, stated they had to respond, and went to talk to the front desk. By then we were done. We packed up and left. No pool. No vacation. Just home.
We learned a few lessons that day, the biggest one is that we now always ask for first floor rooms away from general guest and inform them during the reservation process why. We also learned how alone we could feel.
My message to you is you are not alone. You may feel alone, but you are not. There’s nothing wrong with wanting your child to have normal experiences. He cannot learn “normal” behaviors unless he is in situations that force him to use his skills to adapt. However, as someone who has learned the hard way, I can offer some advice:
- People will not be understanding – They will be angry you interrupted their night out, they will be judgmental that you aren’t a good mother, they may even be sympathetic, but unless they have dealt with it first hand, they will not be understanding. I know it’s hard, but you will get used to the stares. You will become immune to the shaking heads, and you will have a ready response for the well-meaning “advice” that comes your way. Just expect that people will not understand and if someone does show true understanding, they are either a teacher, a mother of a special needs child, or a truly beautiful soul.
- Have an escape plan – I always try to sit or stand near exits. If my child because too overwhelmed I escape quietly with him. I often scout places out first before we go there so I can form my plan of quick exit.
- Have space – ASD and SPD kids become overwhelmed when they do not have the space to “react” to their environment. I often save myself a whole table, a corner, or several seats in a row so my son has room to acclimate himself to his surroundings.
- Sensory tools are your friend, and his – I used to carry a “sensory kit” with me, which included noise blocking headphones, a weighted blanket or vest, a pressure vest, fidgets, chewies, snacks to munch on, and his favorite toy. I often went through several of these tools during an outing. These help the child calm themselves down when they are unable to do it alone.
- Know his limitations – If he can only sit for 15 minutes, that’s fine. Maybe next time it will be 20 minutes. Forcing a kid to do something overwhelming is the sure way to hit a meltdown. My son used to be unable to sit through his sister’s recitals. My husband and I took turns sitting with him in the lobby and took him into the theater only during her numbers. This year he not only sat through her recital, but sat through TWO shows. It’s all about building endurance. Let him participate in activities in his way, while gently guiding him to take chances and push his limits, but do not force him.
- Take advantage of special programs – Sensory safe movie viewings at theaters, special needs days at amusement parks or indoor play areas, Caring Santa/Easter Bunny programs at the mall during holidays, adapted sports, and even “front of the line” passes at theme parks all help not only give your child a “normal” childhood experience, but also alleviate the stress of an outing AND help teach your child valuable skills and socialization. Most important, it provides networking so you can meet other parents with similar struggles.
- Scout out areas first – Birthday parties are the worst, especially in unfamiliar settings. Scout them out first if you can. Do they play loud music over the speaker? How crowded are they? Is the event private, or will general public be allowed in? Are the activities developmentally appropriate for him? Are there quiet spaces for him to de-escalate or take a sensory break? How easily can you watch him? How can he participate in the activities? Refer back to #2 and #3 and have a plan.
- Learn to see things through his eyes – Is it too dark? Too loud? Too crowded? Too this or too that? Know the triggers, help him recognize them, prepare him for them, and then help him through them.
- Never let him hear you or others talk about him – My son overhears other kids talk about him all the time. At birthday parties kids approach me and ask, “Why does he act this way?” He hears it, recognizes he is “different” somehow, and it saddens and angers him. Kids go up to him and say, “Why do you do that? Why can’t you do this???” and he just cries. He knows he’s struggling so he doesn’t need to hear others recognize it. His confidence is already low. He needs to told what he CAN do, not what he CAN’T do.
- Accept help – In the beginning I always brought a tag team to help out. But if you are alone and someone offers to help, accept it. Don’t be proud. I’m not talking about the well-meaning and sometimes sanctimonious advice type of help (“just discipline him…you should take that away from him….don’t let him do that….etc”), but real help. The lady who offers to hold your bag while you deal with a meltdown. The cashier who lets you get out of line to help your son and then lets you jump back in. The event coordinator who recognizes a meltdown and lets you go into an employee only room so he can calm down. Don’t be embarrassed to accept help. Just accept it. Refer to #1. These are the beautiful souls sent to help you when you need it most.
- Know it does get better – He will learn. He will grow. He will cope. And you will learn, grow, and cope as well. It’s a long journey and people along the way won’t understand, but it’s your journey with your child. No one else should judge that.
Your theater experience will become my hotel incident. You will look back at it as the moment when you realize that it’s not about how you parent, but that you parent the way your child needs. Your child can experience his childhood”normally;” it just take experience, patience and a few tweaks in your perspective of what normal really means.
God bless and best of luck.