Long Lunches, Princess Talk And Mama Guilt

My daughter and I have been having long lunches together this summer. We sit for at least an hour and the conversation is always about the same topic, Disney Princesses. She has become quite the expert and once the conversation starts it’s hard to end it. The other day we were discussing the movie Frozen. If you don’t know the storyline (which is hard to believe in this house) it’s about two sisters Elsa and Anna. Elsa has been cursed with ice powers and rather than accepting it her distraught parents keep her locked in their castle hidden away from everyone.

As we were discussing the movie for the gazillionth time Kelsey’s exact words were, “Just because you are born different you don’t lock your kid away.” This is where my mama guilt hits me like a slap across my face. There was one year when Kelsey was little that we hardly left the house. She was having seizures all the time and I had become the “distraught” parent that thought it would be best if we just stayed home. That decision to stay home wasn’t about fear of other people finding out but about my own fear and lack of understanding about my child’s disability. To this day however, that mama guilt gets a hold of me.

Sitting at the kitchen table engulfed by guilt I listen as Kelsey is still going on about the movie. Her statement caught me off guard and made me rethink the movie. She seems to have picked up on the underlying story. Frozen is not just another cute princess movie with catchy songs. It’s a story about a young girl with a “disability” who must learn to control and accept it. In the beginning Elsa doesn’t know how to control her powers and her parents thought it was best to keep her away from everyone. The famous song lyrics let us know that as a child she was told, “Don’t let them in. Don’t let them see. Be the good girl you always have to be. Conceal. Don’t let them know.”

At one point in the movie Elsa has an outburst and unleashes her uncontrollable powers in front of the townspeople. She gets scared and bolts far away to the mountains. It’s here that she learns to control her powers. The song goes on, “Let it go! Let it go! And I’ll rise like the break of dawn! Let it go! Let it go! That perfect girl is gone!” Elsa has finally showed the townspeople she is not the perfect person they thought she was. She is free to be herself, powers and all.

I wonder if Elsa’s parents were still alive what they would think of her. No longer is she that child with the uncontrollable outbursts. She has learned to control her own actions and rise above her own “disability”. I wonder if they would feel guilty about how they dealt with some things in the past.

The Turkeys Under The Bed

I’ve done quite a few things I never could have imagined doing for my children but I never thought I’d be checking under the bed for turkeys. I’ve checked for monsters and I think I have checked for the tooth fairy at least once or twice, but turkeys never. Never that is until now. I walked into her room and she said she was scared. Scared of what, I asked. Her response, “I heard a noise under my bed and I think it’s the turkeys.” I looked, and lo and behold there were no turkeys. I’m almost certain that not too many parents have had to check under their child’s bed for turkeys. I however knew the reasoning behind this.

We live in a city not too far from Boston. We have woods and ponds and green spaces but we are far from being considered “the country.” Our yards are filled with rabbits and chipmunks so when you look out your window and see turkeys it catches you off guard. We have had two turkeys making their way down our street a few times this week. Our neighbors came out and watched with us. It was a sight to see. My daughter however wanted nothing to do with it. No way was she stepping outside to watch. That should have been our clue that we would be talking about turkeys long after they were gone. She was annoyed at their first visit. After all they don’t belong here and they certainly were not invited. And the nerve they have for coming back a second and third time.

The plan now is to casually distract her from looking out the window when ever those turkeys return. It’s the same strategy we used when the ice cream truck used to come and stop in front of our house every day (every single day for one very long summer). Out of sight out of mind. In the meantime we’ll keep checking under the bed and anywhere else a turkey might be lurking. And if by chance we do find a turkey under the bed one day, the For Sale sign will be put out front.

Maybe Next Year

We tried really hard to make this the year we watched the 4th of July fireworks outside. In the end it didn’t happen, but that’s okay. My daughter seems to have her own timeline for doing everything. Forget the developmental milestone chart that is hanging in the pediatrician’s office. My daughter accomplished things in her own time in her own way. She was speaking in sentences at her first birthday party. She however didn’t start walking until she was 17 months old. She learned to tie her shoes when she was in middle school. She wore pull-ups to bed well into her teens and was 20 when she began to fall asleep by herself.

And with all of her accomplished milestones we accomplished patience. It’s a very hard thing to watch your child fall further and further behind their typically developing peers. Most children will move forward however even if it’s the smallest baby steps. When our children are young it’s hard to imagine all that they will be able to accomplish as they get older. They might not accomplish all that we hoped for but somewhere along the way you will stop and realize all the amazing things they can do. In their own time and in their own way they will accomplish so many things, little things that often go unnoticed until you look back. And as they accomplish more and more things we learn the true meaning of patience. Patience is our lifeline.

When my daughter was little the 4th of July was something to be dreaded. Fireworks and parades was not something she looked forward to. The noise and unpredictability was unbearable. This year however, the timing was right and we went to a parade. It was a big noisy parade with fire engines, marching bands and bagpipes. And oh those Disney Princesses were marching along too. That is honestly the motivation that got us there. She brought her headphones and put them on whenever she needed to. She has learned how to adjust. Going to a parade is something we never imagined doing when she was little but she did it. It might not be an official developmental milestone, but for us it is.

With the parade behind us we thought we could get her to watch the fireworks. We have never watched fireworks outside with her and it just seemed like the thing to do since it was the 4th of July. We tried hard to persuade her but she wouldn’t go. Instead we stayed home, broke out the glow sticks, watched the Boston Pops on tv and stayed up late to watch the fireworks. It was a really fun evening. Maybe next year will be the year she goes to watch the fireworks. We’ll just have to be patient and wait and see. And if she doesn’t want to go we’ll stay home and have another great 4th of July evening and try again next time.

If You Really Want My Vote

Dear Candidate Running for City Office,

It’s an election year. If you really want my vote I am asking you to address the need for our city to become inclusive for all. A city that fully supports the needs of all its residents. You talk about the young, the elderly, the middle class, the lower income, but I never hear you mention the disabled.

It’s time our city becomes a community where all are welcomed and valued. It’s time our city becomes a community that is 100% accessible to all of its residents. It’s time our city becomes a community where everyone is educated and aware of its disabled population. Our police officers, firefighters, EMTs, store clerks, city workers, business community and neighbors need to gain a better understanding of the needs of our disabled community.

Everywhere I go these days I notice our city as well as most other ones are putting in bike lanes to accommodate the needs of our bicyclists. Bravo for hearing what that group of our community needs. Bravo also for making the city more wheelchair accessible. There is so much more however that needs to be done.

Just because a city has wheelchair ramps to allow easier access to places doesn’t mean it’s community is inclusive. We need to do a better job educating both children and adults about things such as handicap parking spaces and the importance of shoveling walkways and sidewalks in the winter. We need to be a community that is more considerate of each other’s needs.

Our city has an increasing population of children with Autism and other disabilities. Let’s talk about their needs. For instance, it’s summertime and do you know what this city needs? It needs better parks and playgrounds for ALL of our children. We need fenced in parks with high fences and gates that actually stay closed. We need parks and playgrounds with equipment that is better adapted to our children’s needs. We need parks and playgrounds where our children can go and not be excluded and stared at by both other children and adults. We need to be a community that is more considerate and aware of each other’s needs.

There is a growing trend across our country to make more places “Autism friendly”. Amusement parks, water parks, vacation resorts and housing complexes are being recognized as being inclusive to all. If places like this can exist, why can’t our communities? Just imagine living in a city with not only bike paths and wheelchair ramps but a community that supports, understands and adapts to the needs of the children and adults living there with disabilities.

So to the candidates running for office in cities everywhere let’s start the discussion. Many people are listening.

Sincerely,

A Registered Voter

In The Good Old Summertime

It’s summer. Our kids are out and about everywhere. The routines, schedules and familiar faces are gone. Sometimes the good old summertime isn’t so good. Sometimes when we are out and about our kids let us know that they don’t want to be there and sometimes it’s not in a “society accepted” way. I’m sorry if this annoys you but I would appreciate it if you keep your thoughts to yourself.

I was out with my daughter the other day and we were at an unfamiliar place. It was something she wanted to do so we planned it and went. When we got there however she panicked and did not want to go in. She gave me a shove and started walking away. An older gentleman looked at her and told her not to treat her mother like that and that she was a bad kid. I wish at the time I could have told this man what he could do with his thoughts. Instead I took my daughter and left.

In the past when she was really panicked she would spit in my face and start lashing out. Those days have been long gone though and she has gotten much better at communicating her fears. This incident was unexpected and nothing like it used to be. It has taken years of hard work to get where we are. So to the man that told my daughter she was a bad kid, “Mind your own @#$& business!” We sat in the car for awhile and her words finally came. She said she was sorry and was just scared and wanted to go home.

Summer is a hard time for some kids. The routines, schedules, familiar faces and places are gone. As fun as summer is supposed to be, some days it just isn’t. Lots of kids are off from school and parents are trying to keep them occupied. If you are out and see a child having a hard time don’t judge, don’t criticize and don’t chastise them. This holds true for social media too. Don’t post it. We’ll see it and all of the comments that follow it. Please don’t judge another person’s child that you have absolutely no clue about.

Special needs parents are always told to brush it off and not care about what other people think. Well do you know what? Brush it off or not, it hurts. Our children hear what you say too and it hurts them as well. We are one community. Instead of judging, understand and accept.

The Thoughts In My Head

She turned 21 and my whole world changed. I started writing this blog in the hope of spreading awareness of what it’s like to raise a child with special needs. I try to be open and honest about our family’s journey.

Each and every family has their own journey, hardships, triumphs, good days and bad days. But we all share a common bond that no one else can truly understand. It is the understanding of “our village”. The people in our village don’t even understand the impact they have on our lives. We rely on our village at different times along our way.

I’m convincing myself nowadays that I can continue on this journey knowing that our village is with us. Again, I’m just being really honest here and apologize for the ramblings. But listen up village, we are going to need you. This next year is going to be ever so hard. It’s going to be the year of transition. A big transition. Our kids transition from pre k to kindergarten, kindergarten to middle school, middle school to high school and high school to aging out. Each and every transition is hard but this one is going to be the hardest damn one our family has ever done. I know we will get through it just like all of the other families before us but this one scares the heck out of me.

In the meantime my head is filled with random thoughts each and every day…So I once had this little girl that I didn’t know what to do with…Between the meltdowns and seizures it really was hell on earth…And now we have this beautiful young woman who has come so very far…I cry almost everyday…We are in a really good place these days…I hear her singing to herself in her room every morning waiting for the van to come and take her to her “happy place”…The program is a perfect match…It’s going to be hard to replace…Her time is running out…22 is a scary number…It’s going to be hard on her…It’s a time of lasts for everything…The last summer program…The last first day back to school…The last IEP meeting…Never would have thought that would be a sad thing…The last school vacation weeks…I need to refocus…It will all work out…I know it will…We have our village with us…Come on thoughts in my head it’s time to stop.

The year ahead will come and go, all the “last times” will pass us by and all the thoughts will go away. We’ll transition and continue on. In the meantime however my head is filled.

Thinking Back

My daughter just turned 21 and all of a sudden I’ve become very reflective. Next year at this time she will have aged out of the system and no longer be in school. Today my mind is wondering off thinking about all of the IEP’s we have signed (and not signed) through the years. When my daughter was young and we were just starting out on this journey I honestly didn’t understand just how vital my role as a parent in the IEP process was. I would go to the meetings and listen to the reports and proposed goals from “the team”. When it would be my turn to speak I would mention all of the things my daughter was not yet doing and then the meeting would end and everyone would leave. The IEP would come in the mail, I would sign it and file it away until the next IEP meeting.

Sometimes my daughter would meet her goals, sometimes she wouldn’t. Then one day it dawned on me that if I became an equal member of my daughter’s IEP team she would have a better chance of reaching her goals. I needed to step up to the plate and become much more involved than just signing the IEP. School staff are not miracle workers ( but some of them do come close to it) and they alone can’t make every child reach their IEP goals. I, as the parent on that team, needed to be aware of the goals my child was working on and help them work on them at home. Just because my child is on an IEP doesn’t give me a free pass in helping them succeed. We help our typical children with their homework and the same should be true for our children on an IEP.

If a goal on your child’s IEP is that they will learn to zipper their coat then it should be the parent’s obligation to work on it at home. If a goal is that they will learn to write their name you should be giving them opportunities to practice at home. If another goal is that your child will learn sight words you should be exposing them to your child at home. I understand that home is not school. At home there is laundry to do, toilets to be cleaned, dinners to make, meltdowns and unexpected disasters to deal with. If the goals on your child’s IEP are really important to you however, they need to be worked on at home. You don’t need to sit your child at a desk for hours and drill things into them. Take some extra time to teach your child how to zipper their coat when you are going out. Have them practice writing their name with a new set of markers. Put up some of those sight words around your house. Ask your child’s teachers and therapists for suggestions. Find out how your child is being taught at school and how they suggest you do things at home.

There have been times on this journey when I have been more involved than others with my daughter’s IEP. That is just how life happens. As a parent of a child on an IEP you can’t be 100% devoted to it 100% of the time. Looking back now however, what I realize is that the times when I was more involved my daughter did better. When I became an active member of my daughter’s IEP team her IEP’s became more individualized with more meaningful goals that were usually met.

Summer is quickly upon us and the school year will be over. That however doesn’t mean that your child’s IEP and goals should go away. Summer is a great time to work with your child on their IEP goals. Get creative and make it fun. Have them practice writing their name in the sand. Let them practice getting dressed in the morning. Blow bubbles and see how many you can count. Be aware of the goals in your child’s IEP and sneak them into their summer activities.

I know firsthand that you as a parent are cringing at the thought of summer vacation. It only takes a few days until you realize that it is going to take every ounce of patience in your body to survive. Your only mission is to make it from one day to the next let alone be thinking about IEP goals. Trust me when I do say however that the more I was actively involved the better my child did. Take a deep breath and know you can do this. Be strong and at the end of the day whether it takes a margarita or a cup of hot tea so be it.