Holidays with children with special needs

 

It's holiday season. Some of us get excited to receive invitations to potlucks, dinners and holiday parties. Some cannot wait for that multiple hour drive or plane ride to visit 10 plus family members in record time before heading back home right before school starts again. If you however, crinch when receiving an invitation, hesitating to RSVP out of fear you might have to cancel right before the event. If you are breaking out in a nervous sweat just thinking about driving 10 plus hours, let alone fly, to hop from relative to relative, chances are you're the parent of child with special needs. More so, if your child has sensory issues or anxiety due to their diagnosis. If you're thoughts are not "ah, it's holiday season, what a blissful time", but rather "aaaaaahhhhhhh, it's holiday season! What a stressful time!", this is for you.

 

While working for the Early Intervention Program in Minot, ND (FYI, it's NOT like portrayed in Blood & Oil) I published a newsletter. In one issue I addressed braving the holidays with children with special needs. So here are few tips that might come on handy, especially if you're new on this special needs journey.

Malls and such
Malls and stores can be a nightmare for children with special needs. The lights, the music, the crowds, it's just too much of everything. What might start out as a mesmerized child admiring the big Christmas tree at the mall, can quickly end in a huge meltdown. In a matter of seconds. If I have to get things I try to leave IJ home. However, going to the mall is kind of a treat for him so I'd take him early in the day, before it gets hectic. That way he can look at the decorations, we have lunch, and go home without it overwhelming him. Some malls offer a sensory friendly Santa in a special room without all the noise and crowds. No waiting in lines either, as you get your own time slot. Ask your mall manager about it.

 

It's OK to decline

You'll probably get more than one invitation. It's impossible to go to all of them. In my 20s I might have been able to hop from one event to another, but not anymore. It helps to evaluate which events might overwhelm your child and which might be fun. For instance, we know that large events, or events with a strict and formal schedule overwhelm our son. Unless, there is a safe zone he can retreat to, those are automatically out of the question.

 

Involve your kids

For those with older children, ask them which events they want to attend. Ask them what other things they might want to do during the holidays. Open communication is crucial and involving them gives the feeling that their opinion matters and that they're important. Even if you just let them choose which craft to do, or let them draw postcards. Involving them makes for wonderful memories they'll always cherish.

 

It's OK to cancel

I know proper etiquette may disagree here but don't let that keep you from canceling if you have to. I used to decline almost every event, out of fear people might get upset if I cancel last minute because IJ just had an epic meltdown. Not anymore. If it's a work event or an event hosted by someone who doesn't know us well, I'll tell them we're a tentative. Close friends however, usually understand if we end up canceling. It's crucial though to communicate with the host. Even if I cannot tell them before the beginning of the event, I make sure that as soon as the meltdown or seizure is over (and my child is OK), I call them to let them know. So far there was only one person who stopped inviting us because we had to decline or cancel, and I can live with that.

 

Come prepared

We don't leave the house without IJ's bag. It contains his emergency meds and anything that helps him when he's starting to get overwhelmed or overstimulated. He's not old enough yet to identify when he's getting to that point so we have to keep a close eye on him. We usually ask if there's a room or quiet area we can retreat to when it's getting too much for him. For those situations bring what helps your child, weighted blanket, favorite stuffed animal or toy, a tablet, headphones. Snacks, if your child has texture issues that keep them from eating certain foods. Whatever it may be, bring it with you. Sometimes, all they need is a short break and they're OK to continue.

 

It's OK to leave early

So you've carefully selected an event you thought your child could handle, you came prepared, you helped them regulate but it's no use. Not even the break helped. Your child won't enjoy suffering through stimulation overload, you won't enjoy the event, trying to keep your child's meltdowns at bay and the guests and hosts won't either. The best thing is to leave. Say your goodbyes to the host and thank them for inviting you and for understanding. We left church events, work events and other events early because of meltdowns. We even had to leave our family's Christmas dinner last year and we made it clear we had to leave immediately. We're open about IJ's disability and I believe it's part of the reason people have been understanding.

 

Plan for down time

The holidays can be a stressful time, for both kids and parents. TAKE A BREAK! A day in your pjs, snuggled up on the couch with a movie and your favorite snacks, relax. My kids enjoy taking the dog for a walk, even in the snow. Only because we now don't live in North Dakota anymore ;) Afterwards, we watch a movie or play a game and warm up with hot chocolate and chai. Often those are my favorite days. If possible, I recommend for parents to have some down time too. Even if it's just taking a hot bath.

 

Consider being the host

Sometimes it's a good idea to host the family gathering yourself. That way your child is in a familiar setting with a safe zone to escape to whenever necessary. You can choose a time that you know works well for your child and if you do a potluck you don't have to worry about cooking and baking all day. Family and friends tend to not care that your house may not look like a magazine spread and in all honesty, I often just make sure the "public" rooms are good to go and store anything else out of sight. I'll get to it afterwards. It's not going anywhere. I promise.

 

Are you going to please everyone by doing this? No. Will there be people whose feelings get hurt? Maybe. But the important thing is, you're doing what is best for your child and your family. I learned to stop worrying about making everyone happy. If it meant IJ having meltdowns and being a total wreck at the end, it was not worth it.  Plus, that meant nobody was having fun. It is way more important that our kids think back on the holidays as a time they enjoyed, not a time they dread.

I hope you and your family have a wonderful holiday season.
Love,
Mimi

 

 

 

 

 

Brace yourselves! It's Pumpkin Spice Everything Season

Hey y'all!

Happy Sunday! With fall, pumpkin spice everything season has begun. And I will admit that I'm a true sucker for a PSL, pumpkin butter cake and the likes. I will also admit that it is pumpkin spice season here the whole year through. Paula Deen's Gooey Pumpkin Butter Cake has become a staple in this household to the point that we have converted my sweet potato loving husband and he requests it instead of a birthday cake!

Well, while on the ever so addicting Pinterest the other day, I came across this: Pumpkin Cheesecake Banana Bread

Two of my favorite things combined in banana bread, say what! Now I make a pretty darn amazing banana bread, my friend's husband will confirm that but even I had never thought of adding pumpkin to it. I'm not a huge fan of bananas, but I will eat up some warm, moist banana bread with my morning coffee, or afternoon coffee, well, with my coffee. I felt very Betty Crocker-ish yesterday and wanted a dessert to go with the potato soup and potato soup I made. Just so you can get a picture of this bowl of comfort, here it is:

 



This Pumpkin Cheesecake Banana Bread sounded perfect and so I whipped up a loaf. It's super easy and makes a delicious dense, moist slice of heaven. You might hear angels sing. At least according to my son, who ate it instead of dinner and had some for dessert. Personally, I will leave out the bananas next time and add more pumpkin puree, but like I said I'm not a huge fan of bananas. It was still very delicious! Especially with this cheesecake center!

Look at this perfect cheesecake filling!!!!

I know, I know, just beautiful, isn't it? What are you waiting for! Go get your Betty Crocker on and indulge in this pumpkin cheesecake goodness!

Have a blessed day! Love,

Mimi

What's one more?

Hi, happy weekend everyone! If you thought I was going to announce baby number 4, I am sorry to disappoint you. Ha! We're talking diagnosis. Who? You've guessed it! Mr. Chubby Cheeks. Y'all know he has a pretty impressive collection of diagnoses for his age but apparently there was room for one more.

While in Minot, we were pretty limited with specialists and so we never saw a developmental specialist. Until recently that is. I might have mentioned that IJ's pediatrician had put in a referral a while back (or my then pregnant brain might have forgotten to mention it). Well, it took me a minute to get everything for the pre-evaluation package together and we ended up seeing Dr. P right before IJ's birthday last month. I initially expected to get an answer about IJ's cognitive development, we knew he was nowhere near the level of a 4 year old and had our guesses but wanted a professional opinion. It was crucial for us to know because obviously it makes all the difference in discipline and understanding. We got our answer but this wouldn't be all there was to discuss.

At first Dr. P watched IJ play and interact with me. He gave me his spiel about who he is and what he does and that he has worked with plenty of kids with ADHD and Autism. There it was, the A word everyone else had been avoiding like the plague. I knew where this was going. You see, a doctor doesn't specifically mention these diagnoses if he's not trying to smoothly work his way up diagnosing your child with them. I've seen too many doctors and professionals in the past 4 years. Well played Dr. P. We were 15 minutes into the appointment and he already said we may have to investigate other labels. I asked if he was referring to ASD. He nodded. I told him I wasn't surprised. Dr. P asked me a multitude of questions, played with IJ and observed him. We were there for 3 hours. (Side note: On behalf of all nursing mothers and parents in general, warn us ahead of time that it'll be this long. All this talking and nursing made me quite parched, haha. I would've brought some water with me. Anywho.)

More questionnaires were sent home with us and we were to come back a week later for the actual evaluation. We returned with said questionnaires and answered more questions to see if IJ had the ingredients needed to fit the diagnosis. He did. And he wasn't one of those cases where it wasn't really clear, he's pretty generous with the ingredients, he has plenty of them. But I was always told that he's too social, he doesn't fit the bill. Well, how very wrong they were. Upon sharing the news with family and friends, we received condolences from quite a number of them. And we understand they meant well. However, we don't need them. You see, we've been down this road for 4 years now. We knew we had to expect more possible labels. And really we're just changing from SPD to ASD. Autism is not the end of the world. And part of us is relieved, even glad. IJ needs behavioral therapy, but without the ASD diagnosis he would not have qualified, no matter how badly he needed it. And most importantly, it doesn't really change anything, he's still the same kid. He's still the loving cuddle bug with the crazy fro that he's always been. With that big smile and infectious laugh. The kid that gets handed a quarter from an elderly person because he's just that cute. The kid that made his physical therapist carry him although it was part of his therapy to walk because she simply couldn't say no when he asked to be picked up. The only difference is, we will be able to enjoy him so much more because ABA will help him with his meltdowns, express his emotions and to make sense of a world that doesn't make any sense to him so that it will be less frightening, less overwhelming. And it'll help us make sense of his world.

So really, what's one more? ;)

Love,
Mimi

Why I haven't blogged in a year

Here we are, a little over a year after my last blog post and I realize I owe you an apology. I left you all with the announcement of baby number 3 and y'all never got to see her! So here she is:

 

Ariel Jemima

But now let me address why I was absent for such a long time. Obviously I've never been good at posting weekly, life happens you know. But I do realize I've never been MIA for THIS LONG! I had all the intentions to keep you updated on our adventures in Germany, what I did to the house we're renting to make it a home, the sewing projects, the crafts, Isaiah's progress with treatments, etc. But then it all came differently than I expected. Well, for one my pregnancy was pretty hard on me. I started with mini stroke like migraines that often left me unable to do anything. And with my husband gone TDY quite often, this became harder and harder. I was tired 95% of the time, throughout the entire pregnancy, physically in pain every single day. The one thing that helped a little was Isaiah starting preschool. At least a few hours in the morning I was able to rest if I needed to. But his behavior started to become an issue and dealing with meltdowns while pregnant can be a challenge. Physically and emotionally.

However, not only the pregnancy was rough. Joseph was pulled from one TDY because it collided with my due date so he could be there for the birth. I was considered high risk because of Isaiah so I went for checks bi-weekly. At 39 weeks Joseph and I went for my last check. Since I had lots of amniotic fluid and high blood pressure I was scheduled to be induced the next morning and supposed to get admitted the same night. Everything went well, "beautiful" contractions. Is there such a thing? I was sure it would go just as quickly as Isaiah, if not even quicker. Oh how wrong I was!!! With every push she went up instead of down, she kept turning herself to the side, much like Isaiah but somehow wouldn't go through the birth canal. After several attempts it became clear we had to do an urgent C-section. She was born 21 April, weighing 6.5 pounds. She was healthy and beautiful with a head full of dark hair, just like her siblings. But I had lost quite a bit of blood, which made my hemoglobin drop to 5. They said it was truly a miracle I had not passed out. I needed two blood transfusions to get some color back in me and my hemoglobin up. After 4 days we were sent home and I was put on an iron supplement and told not to lift a finger. Y'all know me, that's pretty hard for me. A few weeks after I had recovered Joseph was sent TDY again. All while Isaiah had a 3 month summer break!!! I think I gained another 50 gray hairs. Without his class routine the meltdowns were back and in full swing. With a newborn and Isaiah I had little time for anything. Isaiah went back to school this month so I have 2 1/2 hours to get stuff done, if Ariel works with me that is. So get ready for more posts from now on.

Love,
Mimi