Telling My Problems How Big My God Is
"Small" Blessings
One of the best things that raising a child with special needs has taught me is that every “small” thing counts and is worth celebrating! To many, it does not seem huge that my child is learning to ride a bike, or skipping, or enjoying regular family dinner time. But to us, these are major accomplishments and so we celebrate!
The great thing about being a sibling of a special needs child is that your accomplishments are well-noted and your small steps are equally celebrated because Mom and Dad have learned to take note, and appreciate, the really small things.
So here’s a list of recent “small” blessings. But when you walk our road, there’s no difference in the size of a blessing that comes along. There are just blessings that come along!
Spending Our Time
- We’d like to see him ride a bike without training wheels, soon.
- We want to see him attend to a task for more than just a couple of minutes.
- We’d love to see him aware of traffic.
- We long to know that he won’t wander away from us.
- We’d like to go grocery shopping without the potential of a meltdown.
- We want him to be healthy and well - physically and emotionally.
- We want him to be able to participate in activities for kids his age, as independently as possible.
- We’d like to see him interact with a broader group of people.
- We’d like to know that he can play with someone without getting frustrated and throwing a toy.
- We want to see both sides of his body functioning well together (love that he skips!!).
- We want him to be able to learn important skills as he grows.
- We’d like to see him follow directions that involve more than 1 step.
- We’d love to have more spontaneous interactions with people, without him having a fear of the unknown (who will be there, what will happen, how long will we stay).
- We’d like to sleep peacefully, not fearing an early riser who may leave the house.
- We’d love to see great sibling interaction because they’re all great kids!
- We want to see his strengths really blossom into areas that he can share with others.
- We want to help others who are on this same journey.
- We need you to know that our child is different so that you don’t expect the impossible from him. Or us.
- We would like you to be aware that there are others out there with similar needs who long to be accepted and welcomed.
- We’d love to hear him express what he’s thinking, or feeling, on a regular basis.
- We’re grateful for what he can tell us, that helps us help you.
- We want him to be able to experience a rich and full life.
But most of all, we learn what we can, and we share what we do because we know that we are not alone on this journey. We know that there are many who pray for him, and for us, on a very regular basis. We would love for him to know and understand this for himself - to know that people love him; to know that so many are longing for him to thrive and succeed; to realize that life is full of people who can support him on his journey.
And yes, we realize he’s young and a lot of these skills will come, in time. That’s good news for us!
The other side of this, that I didn’t realize very much, personally, before walking this journey, is that we become well aware - and very grateful - for EVERY step along the way. For example - skipping. This is a milestone for all children, and it’s so fun to see kids skip! When I think of skipping, it’s always with the idea that the person who is skipping is full of joy. Why? Because it’s just hard to imagine someone skipping while in a bad mood - think about it…can you picture that? (it’s ok if I’m the only one who thinks this way!) But for us, the process leading up to the ability to skip has required SO much work. We are grateful for each of those steps, we are grateful for all of his muscles and systems working together to produce skipping. Walking this road gives us a greater appreciation for each and every step that leads up to a milestone.
If you come across this post and you are on a special needs journey, or if there is a way we can help you, please ask. We have learned from many who have walked/are walking this journey and they have willingly shared with us. We are so blessed by their knowledge and insight - and we are grateful!
What Went Wrong…And Right.
It’s been a tough day at our house. There are some days that I know what the “trigger” is that started things down the steep, slippery hill. Today is not one of those days. Today has had more questions than answers; more fights than understanding.
What went wrong, you ask? Well that’s easy to answer.
Just about everything.
Picasso is struggling. Severely.
I pondered writing a post about all the many things that went wrong (you might still be reading this tomorrow if I did that…) but I decided, for my own sanity, to change my perspective. Am I avoiding all the things that went wrong? No, because they will have to be dealt with.
But I’m exercising my ability to stand up, one more time.
And so, here’s a list (definitely *not* all-inclusive) I’d like to share with you, in an attempt to catch my breath, gather my scattered emotions, stand up, and press on.
“It’s not so important who starts the game but who finishes it.” John Wooden
Latin Proverb
Requesting Prayer
Today is also not going very well.
Therefore, we are requesting prayer as we prepare for church tomorrow.
We have a schedule chart (not perfect, but it will do as a starting point), we have someone to go with him to Sunday school, we have prepared him as best as we can, and we are hopeful. We are not going into this expecting the same results as last week, but learning all we can from last week, to help with this week.
Here’s how you can pray.
*Pray for peace for him, for the remainder of today.
*Pray for a good attitude so we can help him through this day.
*Pray that he will rest a little this afternoon (maybe even sleep, as these emotional ups & downs seem to wear him out, and he was up very early this morning - possibly before the sun).
*Pray that this will turn into a GOOD day for him!
*Pray that he sleeps well overnight.
*Pray that when he wakes up tomorrow, he is at peace.
*Pray that morning interactions with the family go well and that he will eat a good breakfast.
*Pray for his Sunday school teacher and the mom going to sit in to help him - that he will be open to both of them, and that he will listen well and have fun.
*Pray that he will be easy to redirect, if necessary.
*Pray for peace in his heart and mind.
Do You See What I See?
This morning, he and I were talking, and I was trying to give him 2 directions. “Put the book away and then brush your teeth.” As he has processing issues and also has not yet completely mastered 2-step directions, I was speaking slowly, and chose to repeat myself.
At therapy today, his therapist was telling me about an activity that they had to work through. It was a little difficult for our guy, but he was doing well. In the midst of their tough activity, she saw what I had seen a little earlier today as I gave 2-step directions:
Turning 5!
Today our Princess turns 5 years old. The years have really gone by quickly.
Happy birthday, sweet girl! You are such a blessing to our family. You are full of life and love and I’m amazed by your thoughtfulness and kindness. We pray for many more years of happiness and health for you. Stay close to Jesus!
We love you more than all the pink in the world!
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2 days old |
6 weeks old - notice the pink socks (and her onesie is pink, but you can’t see it under the sweater). |
6 months old |
18 months old |
Princess dress |
Almost 2 years old |
3 years old |
4 years old |
Almost 5 years old |
Out of Place…At Church
It’s always been relatively easy to take Picasso to church, in the past. He’s familiar with most of the people with whom he interacts, he’s familiar with the layout of the building, he is used to the schedule and the routine.
Last Sunday he got promoted to the next Sunday school class. The man who had been Picasso’s Sunday school teacher went from having just Picasso in his class, to now having up to 7 kids - talk about a change of pace for that teacher!
The class to which Picasso got promoted has a few older kids and is not as “fun” becuase it’s not a one-on-one class. Still, there wasn’t much trouble last week getting Picasso to go to his new class. Today was a different story, unfortunately. Part of the problem for our guy, is that the teacher teaches 2 weeks and works the third week, so it’s a different location, different kids, and a new teaching schedule for Picasso to get used to. Today was her day to work, so it was yet another change that he had to endure. Tim is the teacher on the weeks she works, but getting a special needs kid adjusted to a new schedule is tough.
We’ve been talking about starting a ministry for special needs families at our church. It’s definitely a growing need in our local area, and we’ve already established that it would be a good ministry to these families. Some of the reasons we’re wanting to start this ministry include:
*opportunity for parents to have their children in small-group settings with other kids, learning about God
*opportunity for parents to have a small break from their child, and attend church and focus on the message
*opportunity to reach out to a segment of our population that need support
*opportunity to let families know that our church exists to help meet these very real needs
Being a mom to a special needs child, I can appreciate the formation of this ministry. Yet, I thought that I’d be able to function as mostly a support person in this ministry. Today I longed for the opportunity to have a break from my child, and to have someone else be there to be his support person.
Today, I felt very out of place at church. I saw that, for now, church is not a place that is easy to go with your special needs child. I was very much alone as I dealt with my child’s issues. This was not anyone’s fault, there’s no one to blame, and I’m not upset with anyone. And in fact, it is hard to even think of a way in which someone could have helped. I just saw the need for a ministry to special needs families from a different point of view today - as a struggling parent.
Picasso was not being bad, but he was clearly having a tough time. His behaviors worsened, which definitely made it look like he was being bad. But what people need to understand is that the behaviors increase as his anxiety and internal struggles increase. His behaviors are an extension of his struggles, not just a desire to be naughty. As his mom, I am probably the only one who can make the following statement about him, based on my full knowledge of him: I truly believe that there is not an ounce of him that ever desires to cause trouble. Sure he likes to have fun, he doesn’t always hear someone saying, “Stop and sit down now,” but that’s complicated by his inability to process things he hears. This is a kid who wants to be good, and wants to be a helper, and wants to excel in all areas of life!
So what would have been different today if there was a special needs ministry already in place? He probably would have someone serving as a shadow/wrap-around ready to move in to help when needed. He probably would not have made it all the way upstairs to his old classroom before I, or his shadow, could get to him. That person also could have probably distracted him and gotten him to stay in his own classroom, and could have reminded him of the schedule via his picture/word schedule.
Unfortunately, that didn’t happen today - but I’m hoping it happens soon! We’re seeing an increase in negative behaviors which means there is more stress in his little body. Things that have never been a problem are starting to become problems - for example, he’s beginning to undress a little as he implodes a little more. Last time this happened it was his shoes and tie (he wanted to wear a tie that day); today it was his shirt.
What did happen today was that I struggled with my son. I struggled to keep him safe, I struggled to keep other people’s property safe from him, I did all the things I know that usually work. They didn’t work.
I wanted to go home. I wanted to be done fighting. I wanted to give up. I felt very alone. But church is a big part of our life. Quitting on church is not an option. I think some re-evaluation is necessary. I think that some education for others is also necessary. Our son is part of our family and our family goes to church on Sundays - we go to OUR church on Sundays.
I will say - I love our church - I love the people in our church. I love knowing that we are prayed for more than I know! I love the fact that there are people who truly understand what we’re going through, and help and encourage us. I love knowing that there will come a time, hopefully sooner rather than later, where more families like ours can come to our church and know that they’re not alone in their struggles with special needs parenting.
And hopefully my son will remain mostly-dressed from now on. But if he’s not - if he’s walking around in bare feet, or with his shirt off for a bit, please show us a little grace and compassion. Don’t judge us - I’ll get him to put his shirt back on eventually.
Soul Matters
Near the end of the movie, someone asks Bethany Hamilton something along the lines of, “If you could go back to that day where you got attacked by the shark, and do it over again, would you skip going surfing that day?” Her reply was basically, no. She said of her situation, “I could never have embraced this many people with two arms,” meaning that her struggle propelled her into the spotlight where she could have a profound impact on people - not because she won her surf competitions after losing her arm, but because she went back out there and tried again. She was able to have some experiences and be inspirational in ways that she might not have had, if she hadn’t lost her arm.
“I could never have embraced this many people with two arms.”
When we were expecting Picasso, we had a level 2 ultrasound done, because results from the 15-week blood tests were elevated, and we were looking at the potential of having a child with special needs. At the ultrasound, all that they saw was a choroid plexus cyst. The radiologist told us that a cyst, by itself, does not usually indicate much trouble in the way of disabilities. He said it’s much more likely that the baby would have a disability if the cyst was paired with something else (cleft palette, shortened limbs, etc.).
However, we were given options. And by options, I mean…options. We were given the choice of continuing with no other attempts to determine if something was wrong. We could have an amniocentesis if we wanted, or we could pursue options to be finished with that pregnancy.
That was heartbreaking. It’s still heartbreaking to consider that.
(Please, this is not intended to push my personal beliefs on life and abortion, versus your personal beliefs. We can agree or disagree. What this is, however, is MY family’s personal story. And it’s just that: personal. Tim & I share these things in the hopes of encouraging others in this journey of parenting and special needs. This blog is never intended for political purposes. Thank you.)
I still remember the fact that we sat in the exam room, at some ultrasound office - not even at my regular ob/gyn’s office - and had to tell the radiologist what our plan was for that pregnancy. We could have opted not to say anything, and thanked him for his advice, but he stood there, as if waiting for an answer. Maybe he was waiting to make sure we would be ok. I don’t know.
I remember my answer.
We already love this child. We will love him no matter what. He is our child and we are ready to face whatever comes.
That day, we PURPOSELY chose life for our son.
Today, we have had a little over 7 years of life with him (now 8!), full of bumps along the way - some bigger than others. We’ve been shaken to our core, more times than I’d care to count. We’ve been up for nights on end, we’ve endured more tantrums and meltdowns than any child should have to struggle with.
People often think of the tantrums & meltdowns from the child’s perspective. Yes, I guarantee you that a child with developmental disabilities does struggle, and that the meltdowns are tough for them - maybe a lack of communication, maybe a sensory issue, maybe something else. But they are also tough on us, as the parents. Our poor child is struggling and WE CAN’T FIX IT! More often than not, we don’t even know what’s wrong. The tantrums and meltdowns are tough, all the way around - for the child, for parents and siblings, for friends.
As I watched the movie tonight, and heard the question asked as to whether she would do things differently, I was in awe of her answer. I immediately considered my own situation in light of her answer.
If I could go back to that exam room, to that same pleasant-but-matter-of-fact radiologist who gave us all our options, would I change my answer to him?
Would I trade long months of near-sleepless nights? Or give up on the child who loved trucks? Or rid my life of ALL these meltdowns and tantrums? Deprive my other children of this precious sibling? Would I make it so that Picasso’s Sunday school teacher never got a barrel of laughs in talking with my son? Would I take away the son who can’t tell me that he’s struggling, but subconsciously sings songs about Jesus all day long? Would I give up what I’ve learned through this, and have no answers for friends who ask me how to deal with their own kids? Would I be willing to give up the precious friendships that I have as a result of walking through these struggles with my son?
Would I give up one of my most valued and precious gifts, just because I knew it would require me to think outside the box and approach life from a different angle?
Her reply: “I could never have embraced this many people with two arms.”
My reply: If you think my hands are full, you should see my heart!
Psalm 23: 5b “…my cup runneth over.”
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Picasso |
I Love You More…
Today was no exception. We almost lost a lamp and an end table by way of a pillow he tossed in anger. (I honestly thought we were beyond this type of behavior…we’re not.) The trigger for that situation seemed to be a dispute with his brother over a communication issue. He wanted to tell his brother the ending of the show, his brother didn’t want to know it.
Aside: What’s really frustrating is that we send Picasso to speech therapy & social skills training, to help him function in these types of situations. So we spend all this time focusing on encouraging him to talk - to actually verbalize what he’s thinking. Here’s a prime example of him communicating correctly, but now struggling when he goes head to head with someone. Also, our other son didn’t do anything wrong. He hadn’t seen the show and wanted to be surprised by the ending. That’s a very fair request. This is just one issue that seems to fly in the face of what we’re trying to teach Picasso. I like to think of these as the “Do, but don’t do…” moments: Do speak, but don’t do it right now. How confusing for a kid who needs to learn to communicate, and is still doing that, and is now presented with a situation in which he should not speak. These situations can be hard for typically-developing kids to figure out - I can’t imagine Picasso’s frustration over this crazy “Do, but don’t do…” situation.
I pulled him in to the dining room to talk to me - he was trying to communicate, and I planned to give him my full attention, and reward his great efforts in communication.
Another aside: Those of you who know Picasso, know that he speaks well. He can carry on a conversation about any number of things (especially if it’s one of his favorites). But have you ever watched him shut down when he’s angry, or when he doesn’t know what to expect, or when he’s confused? Those are the times when the words go away. He doesn’t have the ability to a)process what’s happening, b)understand how to react to what’s happening, and c)communicate while he’s in a tough spot. To his credit, he’s beginning to shout at us, in anger and frustration, when he’s struggling. I know you’re probably thinking, “That’s not appropriate!” Normally, you’d be right. But with this guy, it’s music to our ears when he shouts at us through the struggle. Why? Because he’s communicating in the midst of the storm and he didn’t do that very much, even a year ago. I hope it’s not forever, and it’s certainly not the end goal, but it’s a step in the right direction, and we take what we can get!
Back to the dining room - he was clearly mad, confused, and frustrated. I happened to have a song on my mind, and I immediately pulled it up for him to listen to. He protested, but cooperated. He was mesmerized. Not ONCE did he try to pull out the earbuds! He never tried to close the computer, or close the web page. He listened, he read the words, and before he laid down for a rest, he told me he liked the song.
Have I discovered the cure-all for these tantrums? That’s doubtful; what works today generally won’t work tomorrow or next week. But today, it worked, and that’s all that matters. I’m not borrowing worry and concerning myself with tomorrow’s meltdowns or next week’s tantrums. I’m focusing on the fact that I got to deliver a clear message to my son today: No matter what, God loves us SO much!