Pan - O - Prag Part 2

Ever wish you just stayed home? This event was suppose to be relaxing, easy going and I thought how bad can it be? My mom, uncle Andy and I took Maggie to meet some friends to watch the parade and cheer our friend on. We found out before the parade that he was pretty far back and it may be an hour till we see him, that was the first bad part. The second came when the parade was delayed for half an hour and we had already been waiting for an hour. THEN the fire department put a hose out for the kids to play in which was fun except it sent Maggie over the edge! (Next year we can't be anywhere near it!) She wanted to play in it and I hadn't brought clothes for her. My mom took her and she was soaked and cold after playing for almost an hour I cut her off. I'm a terrible mother but her lips were blue. This is when things started to go wrong. Maggie started crying and melting down, I wanted to leave, but my car was blocked in by the parade and we were their for a friend. So I tried everything to calm her down. Walked with her, squeezed her to give her pressure, cereal, sippy cup, Uncle Andy and our friend Noah tried to help, my mom took several turns. Everyone in our group just felt for her and wanted to help and kept saying 'it's okay', 'she'll eventually tire out and want to watch the parade.' The moms were joking about how awful their children were when they were young, it put me at ease because I was feeling so bad for how miserable Maggie was. But I was also aware I was getting dirty looks, judgmental faces were glaring at me and I wanted to disappear. After several hours our friend Lars finally made his way down the parade route to us! Maggie was excited to see him and I was excited to finally be leaving!

But just before we saw him I had the unfortunate pleasure to meet the rudest and meanest woman in Lakeville. I had a picture of her but decided to delete it and make it more universal. But has anyone ever had some pretty awful encounters with strangers? This woman was so rude and nasty and I understood that my child was miserable but her words just made me so mad I was trying to just respond nicely, kill them with kindness kind of deal!

But after all that drama we saw them...

I have no idea how they do it! but I saw his video's on youtube and he's crazy talented!

I'm that person!

I can't help but judge and think about how I would handle the situation when I see flat out terrible parenting! I don't mean overwhelmed or in a single moment maybe slack off in a teachable moment or stressed "Yes, you can have the chocolate" parent. I mean the lazy, allow your child to do anything and get away with everything parent. And when that parent, more importantly their offspring affects my child - I step in! Case in point - I'm sitting in a waiting room waiting for my child to finish therapy and mother with her 18 month old son sits near me and begins to talk to the moms in the room. Her son proceeds to pull every book off of the shelf and throws them around ( I grew up an English teachers daughter, we always respected books!) Instead of dealing with this child, the Mom just smiled at him. He then climbed on the table and started screaming... These types of events continued on a daily bases for a week or so, I never said anything but I'm sure my face was not covering up my feelings for her in actions.

Yesterday when picking up my child she noticed this little boy and his behavior and she decided to imitate him...

I was not amused.

I told Maggie in a firm voice, "Get Down, You do not climb on the furniture" She whined and got down. She then started taking books and throwing them. I took the book from her and said "NO! You are not allowed to throw books. We read books,k one at a time. Help me clean up! First Clean, Then look at. You may pick out a book to look at." I must have shot this mother a look because she wold not make eye contact with me after this short and sweet conversation with my child.

I'm not sure if she was embarrassed or annoyed with me but I was not going to let her child's poor decisions affect my child!

That's my rant for the moment!

Dilemma

This is one of those times being a parent of a special needs child has no resemblance of being a typical parent. I used to wonder what types of sports my child would want to play or what hobbies they would like. What type of friends they would have, what I would do if I thought they had made poor choices in friends among a million other thoughts about the future.

That was long ago.

Now my thoughts range from point by point, step by step, entirely unsure about the dreaded future. Scheduling conflicts and reading food labels. Stress, anxiety and fear of how others will be unkind, even cruel to my baby. I hate that feeling. I know that for the most part Maggie has little to no desire to even tolerate children around her. The prospect of friends seems like a lost milestone and an undesirable achievement from her point of view. So you can imagine my feelings and mixed emotions when Mags received an invitation to a birthday party for a boy in her class.

Now among the Social issues there is the sensory dilemma. The party is being held at an indoor gym, a type of bounce house meets gymnastics meets pizza and overly caffeinated children. The plethora of concerns on my mind include...

• Pizza - well that's a gluten and dairy disaster I have to distract her from noticing ... I get the joy of telling her "No, sorry sweetheart BUT I have edamame, apple sauce and turkey :-)"
• Lights - often at large public places the lights are overwhelming and if they have special effects then they can be distracting if not annoying or even painful for her
• Bad Contact - Nice way of saying for when my child hits another child...
• Other Parents - this can either be encouraging or depressing.... usually the later
• Children not part of the group - running over, pushing, being rude, and overall unpleasant towards my child and her friends. Never fails going out to a public place means you will encounter some not so nice people!

Wish me luck

Maggie-isms

Going to the zoo, even if it's the 1,000th time is exciting and there are always new things to see and animals that might be awake from the last time we were there! I don't know of a single child or adult for that matter who isn't interested, entertained or fascinated by at least one animal and for most it's probably several animals. I love taking my kiddo to the zoo because she enjoys it completely. Yes she absolutely has moments of panic. Yes she freaks out when I have to physically remove her from the area with the fish (usually a minor meltdown moment, until she sees the next animal) Yes other children and adults can be rude towards her and my thick skin can crumble BUT her joy and happiness is worth the difficult moments. But what I have failed to mention is that it's not just the animals that Maggie can get fixated on... More Unconditional features that the Zoo offers. There are sculptures in the water park area that she will touch and lick... she likes to lay down on the floor (that thousands have walked on) next to the tanks and glass barriers even if there are 20 people trying to get close. And she gets super focused on, to me some odd stuff, and on this particular day it was this lovely dead foliage...

I mean, the rest of the family is looking at these beautiful and entertaining Takin, a big cow type chinese animal, and she is touching, mouthing, stemming and getting worked up by this dead plant... Special
I never know what she will be fascinated by today or tomorrow. I only hope it's not something that will harm her. She has this strange fascination with the burner on our gas stove... Yeah that's fun. Not! Another post for another time . . .

Sh*T

I was sitting in the waiting area yesterday while Maggie was with her Speech therapist. A fellow parent who I exchange experiences with was sitting next to me patiently waiting for her son to finish up his therapy. Maxwell is 5, about 2 weeks younger than Maggie. He is completely adorable. He has more words than Maggie but for the most part just makes sounds and avoids all eye contact. His mother, Naomi was telling me about how her husband has become increasingly strict and into enforcing eye contact with Maxwell. As we laughed and joked she honestly said "I would be happy if Maxwell would just say he's mad instead of looking away or hitting someone" another woman, not a parent but a PCA, butted in saying "well I would be afraid if what he wanted to say was inappropriate!" Naomi, whipped her head around shot her a look

lady, don't judge and until you've walked in my shoes...

That place where your desperate for any word to come out of your child's mouth

At that moment, Maxwell came from around the corner and like everyday he was avoiding looking at any of us. Mumbling something to himself. Walking towards the empty corner so he wouldn't have to be near any of us. Naomi grabbed Maxwell's arm to put his coat on and instantly he started to get worked up. Annoyed and starting to get physical. Naomi looked at me and joking said

"I wish he would just say, This is Shit Mom!"

We all laughed and thought this cute little boy doesn't even say 'ball' or 'mom'

Naomi got Maxwell to make eye contact with her and focused him long to enough to say

"Maxwell are you upset? You don't want to put your coat on?"

Maxwell looked away and Naomi moved his head around and asked him again

Maxwell looked right at her and said

"It's shit"

Naomi was so happy she was smiling and crying. We all were laughing and getting emotional for Naomi and for Maxwell.

The Normal Parent would probably be mortified if their child said a swear word. Embarrassed and probably worried about anything else they might have said that their child could repeat. Gossip, a joke, an unkind description of a person etc. But for a parent of a child with Speech limitations and especially Autism.

We will take ANY word!

EVERY word! Sound. Sign. Anything!

As I see it. The "S" sound is important in many words. Maggie chooses to hiss when she sees a picture of snakes. It makes her super excited and we understand her "S" and that gives me joy that she, on her own, created a sound with the correct word/object (in the word of Speech therapy it's a big deal too)

One day at a time. One word at a time.