Don’t you just hate it when you have to change your child’s therapist or you move across town into a bigger house and have to change school districts? Imagine moving to a different state every 2-3 years. That’s my world being married to a wonderful man in the military. My 11-year-old son with autism, who just finished 5th grade, has attended 8 different schools from west coast to east coast and in between. He has had at least 10 speech therapists and close to 15 ABA therapists. We know a lot about moving!
Don’t get me wrong; I don’t want to complain about my life at all. I enjoy the military lifestyle. My husband loves to serve his country in the military. I don’t have to spring clean my house because when it gets too messy, we just get a new one! We have good health insurance (actually an entitlement not insurance), a military program that is supposed to keep us in areas that have services for my son and my husband’s rank does have its privileges (I get saluted when I enter the gate of the base and get to dress up for balls).
I see moving as an opportunity to make changes. Yes, it’s very hard to leave behind therapists that have worked with my son and know him so well, but going to someone new has benefits too. The new therapist doesn’t know that Koola started talking when he was 9 ½ and may expect more expressive language from him. She doesn’t know that his world revolves around Baby Einstein DVD covers and may present him with other DVDs or books that capture his interest on a more age appropriate level. She doesn’t know about his OCD of touching everything he walks by and doesn’t even realize she is stopping it by coming in the house different ways and loading him with things to carry so his hands are full! Maybe we don’t want therapists in our house every waking hour next time? Maybe it’s time for Mom to be more directly involved with his hands-on therapy? The kids want a dog, oh sorry kids, maybe next house?
But of course, there are the not so pleasant things, too. Koola does not mind changing schools. In fact, I think he secretly enjoys it. See, he is a master manipulator and he knows that those new teachers and aides don’t know what he is capable of doing! Mom has learned his secret and meets with the teachers – even shows videos of RPM sessions! In our last home, he was on the state’s ABA waiver, which meant he had 25 hours a week of ABA. Now he has four. I haven’t even done the Medicaid paperwork yet, it will be a summer project, but I do not expect him to ever reach the top of the list in this state. We rent the house we are in, and while my husband did see the house in person, I only saw it via Skype. What looked to be hardwood floors throughout half the house were really brand new Pergo floors. The off-gassing the first couple months was terrible, but it’s gone now. We can’t find an OT – phone calls are not even returned. And my other younger two neuro-typical kids did not want to leave their friends. I’m so happy for Skype. They adjusted really well to this move and, once again, will be sad to move, maybe as soon as next year.
The military life suits my family and me well; perhaps I am a freak of nature or just a classic ISTJ? Some families in the military have a really hard time with moves. Some moms and dads do not have the support that they need. My support comes from my online network of military and non-military friends. Unfortunately, I gave up on the in-person military support groups early on. TACA gave me my first autism lessons early on, and I am so thankful to have learned from them first instead of some of the other “acceptance” programs I’ve heard of since. Of course I accept my child – I love him dearly! I do not accept that he wants to be in pain and that he doesn’t want friends or to be able to communicate – big difference.
It pains me that parents don’t have much of a choice in doctors or don’t know what other options for healthcare are available. It angers me that vaccinations are REQUIRED for children to attend DoD schools and childcare centers. It makes me want to cry that retirees who have put their life on the line in combat zones in Iraq and Afghanistan lose their child’s ABA service benefit when they retire. Fortunately, I’m not alone with these feelings and many military spouses are fighting hard to change things.
Next time you are frustrated with a turn of events in your life, please think of the young mom, alone in a new community with a newly diagnosed child with autism and a newborn baby. Her husband is in Afghanistan; she has no family close by and does not know anyone. Please say a prayer for her.
Love,
Peripety
(Yes, I chose a Thinking Moms-like name. Peripety is a literary term for a sudden change in the course of events. I’m still looking for something to recover my son. I’ll let you know when I find it!)
Resources for Military Families: (just a short list)
ACT Today! For Military Families
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I was so touched by your blog and by your positive attitude. My family has never been supportive of this autism journey, which is gone on for ten and a half years now, and I do feel sorry for myself at times. I have two sons with autism (one who is non-verbal and one who has PDD-NOS). After reading your blog, I thought about you and all of the other military families with children on the spectrum. I will keep you all in my daily prayers from now on, and I will not have so many “pity parties” for myself (LOL). Also, if you don’t mind, could you tell us what specific anti-inflammatory meds. and herbs you used with your son. That is an amazing story, and it gives me hope for my son. Thank you so very much. May God bless you and your family. Please thank your husband for serving our country!
thanks! We can all use prayers from each other every day military or not!
As far as anti-inflammatories, we used Singulair, Celebrex, Spironolactone and OSR. I think it was mainly Celebrex and OSR. I bought as much OSR as I could when I heard it was being discontinued – we had a 7 month supply stockpiled. Fortunately, he did not regress. We also used Sunrider’s Liqui-5 (Chinese food herbs).
I love moving every few years as well. My daughter, 11, doesn’t handle it so well. We’ve moved twice in the last year, and she has completely unraveled. All she talks about is returning to Oklahoma. We we’re blessed/cursed to stay in Oklahoma for ten years. It was a blessing because we were able to form a really great support group. But I feel it hurt her because that isn’t the norm for military life. Moves are just another opportunity for her to meet life head-on, deal with the challenges it presents, and come out successful.
I was raised military and now I have a son with Autism. I can’t imagine having to move every 2 years like we did now. The one time we moved my son, we lost him for 6 months. The change was just too hard on him.
Through the grapevine, I have heard of EFMP and homesteading. Some of my Autism mom friends locally never have to move again because their son/daughter qualifies to stay here in Norfolk/Va Beach. They said they had a to buy a house as one of the criteria. I know from a little bit of research that there are 6 categories (at least under the Navy program), and this is a category 5.
Has anyone else had experience with this program and is it difficult to qualify for level 5?
http://www.med.navy.mil/sites/nhyoko/Pages/EFMPOverview.aspx
My husband works for the state department and we move as frequently as military but don’t have that awesome tricare! Moving every two years forces my son to change whether he wants to or not. He will start 1st grade (his third school) at his current school and we move again in December. My husband is going to Iraq for a year and the boys and I are moving to a larger city with better school districts and services. I am beyond excited to have ABA clinics that take our insurance, Whole Foods, different therapies. I have been lucky to have government friends become my family support along with local autism chapters containing fabulous people that will lend an ear or shoulder, share the name of therapists or doctors, let you know when the local health food store has something you have been looking for. I see our gypsy lifestyle as a positive thing and dread the day we have to settle down! Thank you Peripty for this awesome post!
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Just wanted to say thanks for the website resources! I have not seen those before. My daughter is dx with Autism and DH is in the Coast Guard. We are a smaller military community and usually stationed at smaller bases and therefore many, many families that get a dx find that they have to get HUMS (humanitarian move) just to be moved to a location where they can get services. It sounds like a good deal but is actually very determinatal to their military career, so families forego services to wait for that next move where they can get more help for their child. We have been fortunate that we are going to be able to be the first family in Juneau, AK to get ABA therapy! It just worked out that a provider in Anchorage wanted to expand as we were looking (Yes, this is the capital city of AK and there are no ABA providers here, until now!) We still have to fly down to Seattle every 6mos for visits at Children’s hospital and to see a DAN! doctor (this is on our own dime since insurance does not cover this one) and while a lot of that the travel costs are covered by the CG because of our location it NEVER covers the real full cost and there are lots of requirements and rules we have to abide by. Just wanted to add my 2cents that, not all military has the luxury of big bases, access to big military communities/support and, services. Some of us are trailblazing in our little communities around the country 🙂
Tasha, Remember that your travel is tax deductible and a DAN is covered by Tricare if you have a referral from your PCM or he is a Tricare authorized doctor and your submit the paperwork yourself if you are on Standard. Check out AutismOne for my presentation and TACA has a paper I wrote about getting stuff covered in the military. Glad you got services in Alaska! We were with the Coast Guard for awhile – being in a smaller city was a nice change, but does have issues too. Thanks!
Military Mom here too … Our son is 19. He was diagnosed 17 1/2 years ago … back before ABA … back before ECHO … back before Tricare. Way back then it was known as Champva. It has been a long road to get the military to even acknowledge the struggles they have placed families in by our constant moves, our lack of services and the continued battle to get funding for our children upon retirement…. Thank you for your blog entry.
Wow. Great article! We’re a military family with a child with autism too! But, we did the opposite. Instead of moving every few years, my son and I stayed here and his Dad moved around. Basically, our son has grown up without his Dad around, because he needs the services here in New York. No Navy bases on Long Island sadly 🙁 But $100,000 a year in services from the school district made up for that (kinda).
My son turns 13 next month and his Dad retires from the Navy after 24 years in December. We’re not sure if we’re staying or leaving. But, I cannot imagine where my son would be today if we had to move every few years. I know in my heart it would have hurt is development greatly. Our situation has been hard, but we try to look at the good things that have happened. Most civilians have NO idea the sacrifices military families make- especially when there is a child on the spectrum. Awareness and education are coming along, slowly- but I hope in the future the system gets better so these kids get the support & services they need!!!!!! Thanks!
Lots of things on here I didn’t know….thank you Peripety!!
Yes I’m I’m still trying to recover my son
I’m still trying to recover my son 6 autism colorado
First off, THANK YOU and your husband – and all the other military families. Autism is hard enough; I can’t imagine dealing with everything plus having your spouse being gone for long stretches of time and having to worry about him (or her), too. I was interested in your mention “Koola started talking when he was 9 ½” – my son is 9 1/2 and has very little expressive spontaneous language so I LOVE to hear when older kids start speaking! Mine can say just about anything in speech therapy, but does not make attempts to use it otherwise. Did you do anything new or different that triggered your child’s language burst?
Melissa, thanks! We hit anti-inflammatories really hard – meds, natural stuff, natural supplements and HBOT. It was what he needed for that big break. I heard him call me Mommy for the first time when he was 9 1/2! We eventually backed off on the meds and kept up with OSR as long as we could. He did not regress and has continued to expand his vocabulary, even has a little bit of commenting and expression other than just what he wants.