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Where are we and where do we go from here?

So, as I have said, J is 7. He is about to finish first grade. It has been a great year for him! But, now that we are on the precipice of summer vacation, I wonder where we go from here?

While most moms at pick up are so happy to be shed the days of schedules and appointments, I am freaking out inside. I am sure you can relate to this. Without structure, my PDD kid is a sinking ship. We have enrolled J at Harbor Haven Day Camp here in NJ. We had heard so many great things about it from professionals that we looked into it. It is a day camp for high functioning special needs kids. You know, Day Camp? Like with color war and swimming and all that good stuff.

The schedule includes speech therapy, occupational therapy and social skills (J’s weakest area). The indoor facility is air-conditioned because the staff understand that heat is like kryptonite to PDD kids. (Sometimes I think I can see J literally MELTING when the thermometer goes above 85)

BUT, it comes at a steep price. I mean this literally, not figuratively. I know there are more expensive camps around, but this is still expensive. Our district is battling us on paying for any of it. They are offering us a program for the summer that is completely not appropriate for J but claiming it is enough! So, the fight goes on.

J is only going to this camp for four of the Anyway, what I want to talk about is how we take the skills we have built up all year and keep them thriving during down time.

When you have a special needs child, and a typical child (or children), it can be hard to balance it all. How do you keep that structure while letting your children enjoy their freedom?

I am seriously asking here!!

Day trips to Hershey Park or the Crayola Factory sound like such a great idea for most, but for me, it sounds like a nightmare. J is a runner. He flees when he has sensory overload. I am constantly saying, “J slow down!” and “E, hurry up!”. Seems like no one can win in this situation.

I have often told my husband that everything I do in life is preemptive. What I mean by that is, I have to think twelve steps ahead so that I can account for every possible scenario that may occur throughout the day, and plans for it.

I leave the house with so much in my trunk because, if I forget one crucial thing in J’s world, it could mean disaster. I want to avoid every meltdown, every unnecessary transition that is feasible to make the day go as smooth as possible.

But we all know this is impossible. No matter what you think may happen, there are so many things that you don’t see coming.

I have two weeks now at the beginning of summer vacation and FIVE weeks at the end of summer vacation that I have to fill with activities. I am petrified at the idea of this. I mean literally, frozen in my tracks.

I am going to attempt some of those dreaded day trips. I figure two and then see how those go. If we have success, than we can try some new places, which would be so amazing for both of my kids.

What are your summer plans?


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9 Responses to “Where are we and where do we go from here?”

  • Nicole W says:

    Hello my friend! Amazing start to your blog! I don’t know if you know this but I teach dance to a group of exceptional needs children! From nn diagnosed seizure disorders to ADHD and including Downs syndrome.
    They are wonderful and all go to camp excel at what they do ( at there level) and are successful high school students now!! I also work for a JCC and the programs they offer are wonderful- and usually scholarships!
    I can’t believe that your school district does not provide a summer school program? As he gets older you will find that “school” all year except maybe 1 week before and after summer session is a wonderful asset! Look for a JCC in your neighborhood they are not for profit and they are a wonderful place if they are anything like the one I work at!

  • Jbear says:

    Thanks, Nik!!
    Just to clarify, my district does offer an Extended School Year program. It is for four weeks, four days a week for three hours. It is academic based. I just don’t feel it is appropriate for J, which is why we have opted out of it.
    If you want to share the name of the place you teach at, that would be great!

  • Autumn says:

    Our son gets four weeks off in the summer, two on either side of summer school. I feel bad for him in one sense.. he’s 7 now, and finally able to understand that other kids are -playing- while he’s at school. But he needs the structure. The four weeks are actually a little damaging in some ways… I just can’t give the kind of structure his school can. I feel what you are feeling. :/

  • Jbear says:

    The lack of structure is so debilitating for these kids. We have tried to keep a schedule for J so he knows what the day has in store. It seems to help him a lot if he knows what’s coming. Especially on days with a lot of downtime.

  • Ann. says:

    I work with individuals and families living with autism. Does Madison (where I live) not offer a 20 day summer program? I have worked summer programs for a number of years, and 4 hrs a day, for 5 weeks, 4 days a week appears to be the minimum standard for classified students. Could be an IEP meeting and insistence that J receive the services he (and your family) are entitled to.

    Glad you were so energized by Autism Speaks. Autism NJ is another wonderful resource and more local. You may want to look at their website if you haven’t already done so. Hang in there- it gets easier, then more difficult (puberty), then easier with the right support network and programming.

    • Jbear says:

      @Anne- We were offered an ESY program for four weeks, four days a week, for three hours a day. Not NEARLY enough for a kid like ours. I was recently told by a former member of the CST that the district summer program is “a hodge podge, thrown together program where the kids do some academics, they go outside and they go home.”.
      We had IEP meetings and I sent letters to the head of our Special Services Department asking for help with the cost of Harbor Havem and have repeatedly received letters in response saying that the program the district is offering is appropriate. We seriously disagree.

  • Ann. says:

    You’re right this doesn’t even cover what is mandated by law – 20 days, unless that has changed. With economics being what it is these days no district is going to give you more unless you can show cause. This means a lot of legwork, and possible legal work of your side – huge headache but maybe worth it. Autism NJ is pretty aware of the legalities and how to work within the system. Have you reached out to an advocate? Districts tend to perk up when you be more proactive and demand services. I am left with just a lot of questions but I’m sure you have asked them.

    • Jbear says:

      @Ann – We hired an advocate and lawyer last year which certainly helped in getting the appropriate services during the school year but they still denied us what we asked for summer. The fight can be so incredibly frustrating!!

  • Ann. says:

    I guess the good news is that your advocate helped with school year needs. But we call this extended school year (ESY) for a reason. The same skills being worked on during the year need to be extended to minimize loss of those skills. If your school system is not addressing that then it’s a problem. What does the district’s consultant say about this? I know that Madison hires from Columbia and there is a woman (I’m not going to name names) from Columnia that consults in NJ districts (she specializes in Autism). May be worth your while to find out about this.

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