Wednesday, August 7, 2013

Guest Post By I Can Say Mama - Travelling With A Special-Needs Kid

While I'm out enjoying the outdoors at the Bavarian Forest, Joy at I Can Say Mama has kindly offered to step in for me. Joy has a beautiful little son, Sunny, who is a special needs child. And while I hopefully haven't forgotten anything important at home, Joy faces even more challenges when travelling with her family:

Travelling with kids always takes a lot of preparation and things to take with you on your trip. The smaller your kids are the more things you have to prepare and to take with you. If you have a child with special needs it adds an extra layer to the preparations for going on a trip. Of course it always depends on the kind of disability your child has, like e.g. if you have a child that needs oxygen or if your child has a heart defect and needs a monitor for the night. We are fortunate that these things do not apply to us but we still have some things we need to take into account when we go on a trip. Let me explain what that means to us:

My son has a global developmental delay which means that his gross as well as fine motor skills are affected. Also, his receptive as well as expressive speech are significantly delayed (I have to say, though, that his receptive speech is quite good compared to the expressive speech, he understands most of what we say). He also has a sensory processing disorder and a feeding/eating disorder. Although he is not officially diagnosed as being on the spectrum he shows some autistic behaviour patterns.

When we go on a trip we have to take a lot of things with us. Sunny's eating issues make it necessary that we take his food with us. Since my son does not chew he still eats baby cereal for breakfast and for dinner. This means that we have to take his cereal flakes and also sometimes the bananas he eats with his baby cereal with us because we never know if we get bananas where we stay or while we are on the road. We also always take a lot of milk with us (if possible) because Sunny loves milk and drinks plenty of it. I always say that he would only drink milk the whole day if we just let him (which we don’t because too much milk is not healthy). I always mix a bit of milk with a lot of water in his bottle and that is okay for him. For lunch Sunny eats what we eat, cut in very tiny pieces – just the right size to swallow if he does not try to chew. If we are not sure whether we get anything that he can eat while we are on our way I almost always take some vegetable baby jars with me – just in case. He also still has to be spoon-fed so I always make sure to take his feeding spoon with me as well as some fruit baby jars. Sometimes he just refuses to eat when he is too tired or in unfamiliar places so I try to offer him as much of his favourite foods as possible.

Sleeping is another big thing to be taken into account. At home we have a nursing bed for him with room-high bars. Sunny has something that is called “motor-driven agitation” which means that e.g. he has a hard time to sit or lie still. If he were to sleep in a normal bed he would not stay in there but get up again and again and he would most likely fall out of it at night. The bed is also a safe place for him because he might hurt himself accidentally when he gets out of his bed without us noticing it. However, when you are at a hotel there is no bed like that available. As long as he was little he slept in a travel cot which worked very well. Now that he is older and too big for the travel cot I had to find another solution. After searching the internet I found some kind of fitted sheet for a normal mattress. It has a part like the top of a sleeping bag attached to it. He slips his legs inside the sheet and his upper body slips into the sleeping-bag top. This prevents him from leaving his bed and he loves the coziness of his special fitted sheet. He cuddles into his blanket and sleeps so well and I can be relaxed because I do not have to worry about him escaping his bed.

Due to some motor planning issues and problems with his hip he walks unstable and tires easily which means that we still use a stroller for every trip that we take. It is a special needs stroller for big kids (up to 110 lbs) which means that it is heavy and bulky. But right now we could never do without it. However, it fills a big part of my car’s trunk because it is so big.

Due to Sunny's speech and language delay we have gotten a talker (which is quite heavy and rather unwieldy) for him this year. Because he still has to practice a lot how to use it (you can compare it to learning a foreign language which is not easy, as some of your surely know) it is essential that we take it with us when we go on a trip. That means that we also have to think of the charging cable, too.

Because of Sunny’s motor-driven agitation we have not dared to fly with him anywhere yet since we do not know how he would handle a flight without being able to walk around constantly. Apart from that I would not know what to do with all the stuff we need to bring with us! We would have a lot of extra weight to pay for.

However, we have already taken long road trips with him which always works out fine. Sunny really enjoys driving in the car, watching the scenery pass by. He always has a lot of books and toys to keep him entertained. After two hours we need to take a break in order for him to move and stretch a bit but then we can drive on. It is not even problematic to take long trips with him when I am alone. So Sunny and I are planning to visit an old and dear friend of mine and her son in Austria in August, which is approximately a 5 hour drive without breaks. We did it last year already and he did so well. I am also glad that he does not have any issues with strange surroundings, unknown places or changes in his schedule like many kids with special needs often do. This makes traveling and exploring new things so much easier.

Sunny is obsessed with books. This is partly due to the fact that he often communicates by means of his books. It is so relevant for him that I take his most important books with us when we leave home. If we are away for a longer time and he is missing a book it is very difficult to distract him. He has a very good memory and thinks about this book he is missing constantly, always tells me he wants the special book, is so very unhappy and does not understand why his book is not there. The problem is that he has a LOT of books (because he is interested in so many things) and that his favourite books vary from time to time. So I always pack up plenty of his books, the ones that I know are very important right now and also some of those that I think might become important again while we are away.

From the medical point of view there are fortunately not so many things we have to take into account. However, we always take Sunny’s most important medicine with us because he has a weak immune system and gets sick quite often so I make sure I have the most important stuff handy.
Although there are many things we have to organize when we travel we still like to take trips. Sunny is very open to new things, he is a curious, adventurous little guy who likes to explore unknown places and we try to do trips with him on a regular basis because we enjoy it so much; Sunny, too!

Thanks so much for sharing your travel stories, Joy, and I hope you have tons of fun during your trip to Austria!!  If you want to learn more about Joy and her wonderful family, please go visit her over at I Can Say Mama!


  1. Evening (maybe morning over there?), Joy! Thank you so much for sharing your story. That sounds like a lot of work and effort, and it is great you do so with little frustration! I'm sure Sunny appreciates it and loves traveling and experiencing new places. It sounds like he handles that aspect about 500x better than I.

    I'm glad there aren't many medical supplies you have to bring. Do the meds he takes help him remain healthy and avoid being sick consistently?

    To be honest, I am curious if you'd be allowed to carry everything needed via a plane. Do most airlines have baggage limits? It's been ages since taking a trip by plane.

    I'd never known the full extent of your life with your son, minus some of the schooling topics mentioned as of late, and I'm glad I was able to learn more about it here!

    I hope the two of you have a great trip!

    Jak at The Cryton Chronicles & Dreams in the Shade of Ink

    1. Jak: I think it depends on the airline. Travelling with little kids, I know that there are a lot of things you can check without extra cost (like travel beds, car seats, etc.). Some large sports gadgets (like bikes, surf boards, etc.) are free, too, at least for trans-Atlantic flights. I could imagine that most of Sunny's stuff would be checked for free, but one would definitely have to check with the airline ahead of time..

  2. Hi Joy! So fun to see you over here! So first, I am really excited to read about that sheet. Tucker still sleeps in his crib as well because he rolls around a lot and doesn't fall out. When we travel, we bring a "pack and play" as well but he's gotten too big for it now. I was really worried when we went to the beach this summer with him but they had a crib we used. Phew. But the bed issue has made it so that we haven't visited my husband's parents this summer because I know it's going to be a problem! I must find this fitted sleeping-bag sheet.
    I hope you're having a wonderful vacation and that Sunny is in awe over his new wonderful surroundings. I can't wait to see the photos when you get back!

    1. Kristi: We had Violet sleep on an air matress when she was too big for the pack-and-play but I didn't want to risk her sleeping in a bed, yet. She didn't mind at all and if she fell out, she'd only "fall" a couple of inches..